Symptom Fluctuation in Fibromyalgia: Environmental, Psychological and Psychobiological Influences 9783110313802, 9783110313734

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Kerstin Wentz Symptom Fluctuation in Fibromyalgia

Health, Medicine and Human Development

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Symptom Fluctuation in Fibromyalgia Environmental, Psychological and Psychobiological Influences

DE GRUYTER

Author Licensed Psychologist Kerstin Wentz, Ph.D. Sahlgrenska Universitetssjukhuset Arbets-och Miljömedicin Mailing address: Box 414 SE-405 30 Göteborg Sweden [email protected]

ISBN 978-3-11-031373-4 e-ISBN 978-3-11-031380-2 Library of Congress Cataloging-in-Publication data A CIP catalog record for this book has been applied for at the Library of Congress. Bibliographic information published by the Deutsche Nationalbibliothek The Deutsche Nationalbibliothek lists this publication in the Deutsche Nationalbibliografie; detailed bibliographic data are available in the Internet at http://dnb.dnb.de. © 2014 Walter de Gruyter GmbH, Berlin/Boston The publisher, together with the authors and editors, has taken great pains to ensure that all information presented in this work (programs, applications, amounts, dosages, etc.) reflects the standard of knowledge at the time of publication. Despite careful manuscript preparation and proof correction, errors can nevertheless occur. Authors, editors and publisher disclaim all responsibility and for any errors or omissions or liability for the results obtained from use of the information, or parts thereof, contained in this work. The citation of registered names, trade names, trade marks, etc. in this work does not imply, even in the absence of a specific statement, that such names are exempt from laws and regulations protecting trade marks etc. and therefore free for general use. Typesetting: Compuscript Ltd., Shannon, Ireland Printing and binding: Hubert & Co. GmbH und Co. KG, Berlin/Boston Cover image: iStockphoto/Thinkstock ∞ Printed on acid-free paper Printed in Germany www.degruyter.com

Table of contents Introduction   1 What is the meaning of the label fibromyalgia?   1 What are the settings of fibromyalgia?   2 Long lasting musculoskeletal pain, long lasting widespread pain and fibromyalgia 4 References 6 Section I: The developmental phase of symptoms 1 1.1 1.2 1.3 1.4 1.5 1.6 1.7 1.8 1.9 1.10

9

Fibromyalgia seen through the life histories of the afflicted women   11 11 Introduction Our study 13 What did we find? 17 An overstrained self as a child 18 An adult woman with an unprotected self; high load, self loading and dissociation of unmanageable mental content 20 Compensating strategies 24 Discussion 27 Why women? 28 Chronic illness 28 Limitations 29 References 30

2 2.1 2.2 2.3 2.4 2.5 2.6 2.7 2.8 2.9

Dissociative and self-loading patterns in adult life 33 Introduction 33 Our study 35 Our findings 38 Discussion 47 Is “unsuccessful” dissociation … 49 … effective in a fibromyalgia development process? The I myself scale 50 Limitations 51 Acknowledgements 51 References 52

3

Psychological, psychobiological and environmental patterns during the developmental phase 55 Environmental stressors 55 Psychological and somatic load from trauma as accidents

3.1 3.2

49

56

vi  3.3 3.4 3.5 3.6 3.7

4 4.1 4.2

 Table of contents 56 Abuse and neglect Localized pain, high load, monotonous tasks, or bullying in working life 58 Relentless load from premorbid over activity 59 Aging 59 Difficulties sleeping 60 References 62 Increase in mental load: life events as triggers of generalized pain Mental load 65 Discussion 67 67 References

Section II: Living with fibromyalgia

69

5 5.1 5.2 5.3 5.4

The phase of living with fibromyalgia 71 A continued high level of mental load 71 Reduction of cognitive functioning 72 Discussion 73 Could such a tentative model be verified? 75 References 76

6 6.1

Variation in the level of pain 77 To live under stress and to be more reactive to stress when stress induces more clinical pain 77 Pain inhibitory function and invariability in pain 80 Naturalistic data 81 Working conditions at work and at home 81 Sleep 83 Exercise 84 Emotions and emotional processing 86 Suppression, dissociation, and pain 88 Dissociation 89 Being overactive 90 Association is the opposite of dissociation, suppression, or controlling 90 Group treatment, significant others, and substantial gaps in pain 92 Addressing emotional processing deficits 94 Addressing ANS unbalance 96 The ANS and biofeedback 96 References 97

6.2 6.3 6.4 6.5 6.6 6.7 6.8 6.9 6.10 6.11 6.12 6.13 6.14 6.15

65

Table of contents 

7 7.1 7.2 7.3 7.4 7.5 7.6 7.7 7.8 7.9 7.10 7.11 7.12 7.13 7.14 7.15 7.16 7.17 7.18

101 Dissociation interferes with gaps in pain Introduction 101 Level of symptoms 102 Gaps in pain 102 Psychosocial processes and fibromyalgia processes connected The study 103 This is what was found 105 Keeping distress out of sight 107 Discontinued crisis or not accepting 109 Not planning a pain gap 110 Losing the unplanned pain gap 111 Acceptance/creating pain gaps 112 Discussion 113 The fragile balance of the pain-gaps 114 Adapting to impairment 115 Dissociation 115 Transformation as rehabilitation 116 Limitations 117 Acknowledgement 117 References 117

Section III: Recovery from fibromyalgia 8 8.1 8.2 8.3 8.4 8.5 8.6 8.7 8.8 8.9 8.10 8.11 8.12 8.13 8.14 8.15

 vii

103

119

Women’s narrations on the process of recovery from fibromyalgia Introduction 121 Our sample 123 What did we find? 124 Strong but not enough to be weak 125 Increase in mental load – development of fibromyalgia 128 Challenge of fibromyalgia 129 Decrease in mental load – symptom remission 131 On parole – strengthened enough to be weak 132 Discussion 133 Patterns compared 134 Transformation as a remedy? 135 Implications for treatment and prevention 136 Methodological considerations 137 Conclusions 137 Acknowledgements 138 References 138

121

viii 

 Table of contents

Section IV: Environmental, psychological and psychobiological 141 fluctuations 9 9.1 9.2 9.3 9.4 9.5 9.6 9.7 9.8 9.9 9.10 9.11 9.12 9.13 9.14 9.15 9.16 9.17 9.18 9.19 9.20 9.21 9.22 9.23 9.24

Factors influencing onset, level of symptoms, gaps in pain, recovery and maintenance 143 The onset 143 Environmental aspects 143 Psychological aspects 144 Psychobiological aspects 144 Level of symptoms 145 Psychobiological influence 145 Psychological influence 146 Environmental influence 148 Gaps in fibromyalgia pain 149 Psychological context 149 Environmental regulation 150 Recovery 150 Psychobiological processes 152 Environmental context 152 Maintenance as in a maintained level of stress? 153 Psychological functioning 154 Impaired cognitive functioning is a part of a cognitive-emotional pattern 155 Psychobiological dysregulation 157 Working life 159 Knowledge and power 160 Discussion 161 Chronic or traumatic stress: cognitive and physiological correlates 162 Inflammation 164 Considerations on treatment. What are the targets and the means? 165 References 167

Section V: Acknowledgements 173 About the author 175 Acknowledgements 175 Index

177

Introduction “… My complaints started when I was 37 years old I think it was. And at that time it was a pain like melted lead running through my veins. I wanted to wrench all my muscles and flex them to get some relief … I got really intensively ill … I had even difficulties cutting my food at a time and had to get help with that. I could not write by hand, could not steer … had difficulties with my motor skills. Got dizzy and … I had a qualified profession as a manager and in accounts and got afraid not to cope. Had to check back upon myself endless times and thought it went wrong anyway …”

What is the meaning of the label fibromyalgia? Fibromyalgia is a syndrome of widespread pain that is known in all parts of the world in both developed and developing countries. With few exceptions, such as the Nordic countries, the discovered rates of sufferers from fibromyalgia in the mapped populations exceed 2% (1). Based on present studies, fibromyalgia could be regarded as a prevalent manifestation of ill health. Besides affecting numerous individuals, fibromyalgia is also in numerous dimensions disabling to those that are afflicted. This means that parallel to ongoing and generalized pain, a person stricken by fibromyalgia often has to endure a struggle with fatigue. The fatigue that comes with fibromyalgia is pictured by the sufferers themselves in terms of a constant sleepiness or as a feeling of being screened off. Sometimes this sleepiness, or fatigue, is more disturbing than the core symptom of generalized pain (2). Difficulties with memory, concentration, hand motor skills (3), and problems with sleeping can also accompany generalized pain (4). Moreover, fibromyalgia is usually regarded as a chronic condition (5). What also makes it a long lasting condition is that an estimated mean age of onset of fibromyalgia symptoms is rather young at just below 40 years of age in the Western World (3, 6). Parallel to the view of fibromyalgia as a chronic condition, researchers in the field of pain have documented recovery from the syndrome (7, 8). Regarding adult sufferers, Bengtsson et al. reported that 2% of sufferers diagnosed with the disease had recovered over a period of 8 years (7). Concerning recovery or improvement over time, findings regarding the course of fibromyalgia in children and in younger adults produce a somewhat brighter picture (9, 10). In addition to the rate of recovery being very modest, the phenomenon of the recovery itself is seen by researchers as usually being a transitory state (5). Nevertheless, this rarely occurring event of recovery will be elucidated further in this book and then through the words of recovered women. As well as trying to understand the potentially important processes that surrounds the state of recovery from symptoms, the phenomenon of gaps in pain will also be looked into. A large minority with fibromyalgia experience breaks from pain, meaning that while they are awake, they do not feel any pain at all for a limited amount of time (11). Time off from pain might mean a few hours “break” for some, but weeks or years without generalized pain for others (3, 12). By studying factors that seem to influence the on-off “switches” of pain in fibromyalgia, a further possibility to help

2 

 Introduction

the sufferers opens up. Contributing with insights regarding how to lower the level of symptoms or how to create a break from pain and thereby forming empowering rehabilitation programs is important, however, the study of gaps in pain can also help us to understand more about the mechanisms behind the pain and also behind the cluster of symptoms that constitutes fibromyalgia. In line with this kind of analysis, the aim of this book is to shed light on the nature of fibromyalgia or the dynamics of fibromyalgia from looking at the presence or absence of the cluster of symptoms, as well as the fluctuations in the level of the symptoms. The presence or absence of symptoms and the fluctuations in symptoms will be scrutinized from the perspectives of environmental, psychological, and psychobiological influences. As already indicated, the cause or the physical processes underlying the symptoms of fibromyalgia are insufficiently understood. The present procedure of diagnosing fibromyalgia is based on the “least denominators” of the fibromyalgia symptoms transformed into diagnostic criteria, established by the American College of Rheumatology (ACR) and published in 1990 (13). The diagnostic criteria were developed to create a consensus regarding definitions that were based on the characteristics of the syndrome. These characteristics were also meant to distinguish fibromyalgia from the earlier known diagnostic entities of rheumatic diseases. The consensus criteria from 1990 include a history of self-reported widespread pain in both sides of the body and above and below the waist. This generalized pain had to have lasted for at least 3 months. The criteria further include a clinical examination concerning pain. Through this examination, an indication of pain needs to be triggered from digital palpation in a minimum of 11 out of 18 so-called tender point sites. During the clinical examination, the individual needs to express a reaction of pain and not only tell that there is tenderness at the tender point site. Parallel to the severe consequences regarding quality of life for the individual, a syndrome as severe as fibromyalgia logically also affects the individual in the sphere of social and economic conditions. An example of this is in Sweden where 91% of the women in the age group 25–54  years of age work outside the home. For women in Sweden with fibromyalgia the corresponding figure is only 64% (14). This simple fact makes it easily visible that fibromyalgia causes a great deal of expense for those suffering from the disease. The broader picture shows a loss of income for those in Europe stricken with fibromyalgia corresponding to 1.2% of the Gross National Product (15). Besides this enormous loss of income of private households, the syndrome also means substantial expenses for the health care system and for employers (16).

What are the settings of fibromyalgia? In order to approach the phenomenon of a not yet fully understood disease in a systematic manner, it is important to be knowledgeable of fibromyalgia in its global occurrence. The pain syndrome of fibromyalgia has often been placed into the domain of rheumatic diseases and as such is included in epidemiological attempts of

What are the settings of fibromyalgia? 

 3

rheumatology. This makes prevalence of fibromyalgia is reasonably well known (as it has been documented together with earlier defined rheumatological diseases). From these epidemiological attempts, fibromyalgia has been accounted for in developed as well as in developing countries, and shows quotable variation regarding prevalence in different settings. The prevalence figure for Spain is 2.4% (17), while for Brazil it is 2.5% (18). Rural areas of Bangladesh hold a prevalence of 4.4% and urban areas 3.3% (19). In Pakistan, like in Bangladesh, fibromyalgia was recorded together with rheumatological diseases and the prevalence for urban and rural conditions was accounted for separately. Unlike India, the prevalence figure for rural citizens in Pakistan was slightly lower than that for urban citizens, 2.6% compared to 3.2% (20). From all these locations, a clear dominance in women is recorded. This dominance in women is reported in Bangladesh but the exact figure is not given. For the other countries, the figures are given and the proportion differs from one in ten of those afflicted being a man to close to no men at all identified as fulfilling the criteria. In the 1990s, researchers in the USA aimed at investigating the prevalence of fibromyalgia and recorded a prevalence rate of 2.0% in the general population (21). One in eight of those afflicted was a male. The researchers further concluded that the characteristic features of pain thresholds and symptoms were the same whether an individual with fibromyalgia was approached by the researchers through health care “as a patient” or whether he or she was contacted by researchers outside of health care. The researchers simultaneously postulated that it seemed as though “the patients” with fibromyalgia were more severely ill than the “non-patients” diagnosed with the syndrome. The patient subgroup of participants suffered from a higher level pain and a higher level of functional disability. This distinguished pattern of variation in levels of severity regarding intensity of symptoms tied to different settings as well as the occurrence of the syndrome itself between settings are recurrent findings in scientific research. To be knowledgeable about this kind of fibromyalgia mappings opens up a possibility to increase our understanding regarding the syndrome-based environmental influences, known psychobiological processes, and severity of symptoms. The setting of the syndrome is further known from Canada, where researchers in the 1990s specifically aimed at investigating the rate of citizens suffering from fibromyalgia (22). They documented a prevalence of 3.3% regarding adult citizens living in the community and not in institutions. The proportions of men versus women in this setting was recorded as one fourth of those suffering from fibromyalgia being a man. This specific research group further reported that besides being woman, qualities of “middle age, less education, lower household income, being divorced, and being disabled” statistically increased the risk of having fibromyalgia (22). From the USA, a pattern of being divorced, not having completed high school and having a low household income was reported in relation to fibromyalgia (21). Researchers from Sweden also found having a lower education and an experience of relatively lower social support in relation to the disease. They further documented that living under less favorable socio-economic conditions, including living in a less

4 

 Introduction

favorable housing, being an immigrant, or being a person with a family history of chronic pain, were associated with this specific diagnosis (23). The related Swedish record of social conditions and fibromyalgia was part of a prevalence study that aimed at mapping different chronic pain conditions in the general population. From this epidemiological attempt, a figure of 1.3% suffering from fibromyalgia was also recorded (24). For other Nordic countries, the prevalence rates are similar to those of Sweden at about 1% of the population. In Denmark, a subset of subjects aged 18 to 79 years were contacted and in a first step, asked whether they had widespread muscle pain. Through a further procedural step, the proportion of the Danish population that was calculated to suffer from specifically fibromyalgia was less than 1% (25). Only females were found to meet the ACR 1990 diagnostic criteria. In this respect, the Danish result was similar to the above related prevalence count from Sweden as the research group did not find any males that fulfilled the diagnostic criteria of fibromyalgia. Research was also conducted on prevalences regarding muscle pain conditions in Finland (26). Almost the same prevalence figure as in Denmark was presented. One exception was that one in three sufferers was a male. The Finnish study concerned 8000 adults over the age of 30 years, and as in Sweden, this study also mapped factors associated with the development of fibromyalgia. The research group made statistical calculations that showed the likelihood of developing fibromyalgia seemed to decrease step by step when the level of education increased. A high level of physical stress at work statistically increased the risk of fibromyalgia. Among white collar workers there were no cases detected. As a parallel to the above socio-economic conditions surrounding the syndrome, records from Pakistan also indicated that underprivileged socio-economic conditions in a developing country are risk factors for developing fibromyalgia. In Pakistan, where the prevalence figure was identified as above 3% for urban citizens, a contrasting prevalence figure was also presented, namely the separate prevalence figure for urban affluent citizens of 0.1% (20).

Long lasting musculoskeletal pain, long lasting widespread pain and fibromyalgia As related above, the widespread pain syndrome of fibromyalgia is not only considered from the aspect of rheumatology, but also from the angle of a musculoskeletal pain phenomenon. In order to increase understanding and make the discussion of fibromyalgia based on solid ground, results from researchers such as White et al. (27) can be helpful in drawing a map. Such a map shows that in countries worldwide, which are generally thought of as economically developed, musculoskeletal pain is very common. In the USA, between 14% and 26% of the population suffers from chronic pain or arthritis (28, 29). A subgroup within this larger group consists of those who suffer from long lasting pain that is not limited regarding localization. In the United States, 11% of the adult population are estimated to live with pain that

Long lasting musculoskeletal pain, long lasting widespread pain and fibromyalgia  

 5

could be classified as widespread (21). Another economically developed country is Canada, where the prevalence of long-lasting pain and long-lasting widespread pain is about two thirds of that reported in the United States (21). In Europe, the prevalence of widespread pain is similar to that reported in the United States (30–32). The European prevalence of widespread pain also seems to exceed the corresponding figure reported for the USA. In economically developing countries such as Thailand (33) and Indonesia (34), the phenomenon of musculoskeletal pain is even more common than in developed countries, thereby affecting one fourth to one third of the population. The definitions, the relationships and diagnoses of musculoskeletal pain, widespread pain, and fibromyalgia are not easily intuitively grasped. The haze of definitions might be easily dispelled through knowledge regarding the research process behind classification and prevalence count for these conditions. From a number of publications on the matter, one could pick and choose a study. In 1993, a group of researchers presented a study of chronic widespread pain in the general population of northern England (35). From their publication, we learn that 35% of those who answered a postal survey reported chronic pain. Eleven percent also reported that together with having chronic pain, their pain was widespread. However, the specific diagnosis of fibromyalgia demands clinical examination. Regarding the subgroup that reported widespread pain, clinical examination resulted in an estimated 4.3% of the general population suffering from fibromyalgia. As fibromyalgia was defined in order to make classification possible and thereby also make systematic research possible, the debate that follows needs to be mentioned and considered. An example of this debate is that after the initial study on prevalence, a part of the above mentioned northern England group of researchers published scientific articles arguing that fibromyalgia seemed to be a disease that could not be distinguished from the larger group of chronic widespread pain conditions (36). When diagnosing fibromyalgia, the tender points are counted, and these researchers emphasized a finding of the recorded tender point count showing an obvious relationship with levels of poor sleep and levels of fatigue. This relationship appeared irrespective of whether the examined individual suffered from widespread pain or not. This group of researchers summed up their findings as that a majority of people with chronic widespread pain did not have a high tender point count and that a high count need not include widespread pain. In their conclusions, they also highlighted the role of poor sleep in making musculoskeletal pain conditions persistent. These researchers further argued that fibromyalgia, instead of being a distinct entity might be regarded as an endpoint of a spectrum of conditions of chronic pain. In this context, it might be interesting to add that from the initial report on prevalences in northern England the researchers involved had related fibromyalgia as “a group who are more likely also to report symptoms of fatigue and depression” (34). A similar conclusion on ties between psychological distress and specifically fibromyalgia was made by a group of researchers in Canada (37), who compared individuals from the community diagnosed with fibromyalgia and individuals diagnosed with

6 

 Introduction

widespread pain, who did not fulfil the diagnostic criteria of fibromyalgia. The authors related their own earlier research results in terms of significant differences between patients with chronic widespread pain with a high tender point count and patients chronic widespread pain without a high tender point count. The former group was described in terms of “a higher female prevalence, more fatigue, worse functioning, and more distress”.

References 1. White KP, Harth M. Classification, epidemiology and natural history of fibromyalgia. Curr Pain Headache Rep 2001;5:320–9. 2. Söderberg S. Women’s Experience of Living with Fibromyalgia: Struggling for Dignity. Dissertation. Umeå, Sweden: Umeå University, 1999. 3. Wentz KAH, Lindberg C, Hallberg LR-M. Psychological functioning in women with fibromyalgia. A grounded theory study. Health Care Women Int 2004;25:702–29. 4. Moldofsky H, Scarsbrick P, England R, Smythe, H. Musculosceletal symptoms and non-REM sleep disturbance in patients with ‘fibrositis syndrome’ and healthy controls. Psychosom Med 1975;37:341–51. 5. Felson DT, Goldenberg DL. The natural history of fibromyalgia. Arthritis Rheum 1986;29:1522–6. 6. Kennedy M, Felson FD. A prospective long-term study of fibromyalgia syndrome. Arthritis Rheum 1996;39:982–5. 7. Bengtsson A, Bäckman A, Lindblom B, Skog T. Long term follow-up of fibromyalgia patients: clinical symptoms, muscular function, laboratory tests—an eight year comparison study. J Musculoskel Pain 1994;2:67–80. 8. Ledingham J, Doherty S, Doherty M. Primary fibromyalgia syndrome –an outcome study. Br J Rheumatol 1993;32:139–42. 9. Buskila D, Neumann L, Hersman E, Gedalia A, Press J, Sukenik S. Fibromyalgia in children. An outcome study. J Rheumatol 1995;22:525–8. 10. Granges G, Zilko P, Littlejohn GO. Fibromyalgia syndrome: assessment of severity of the condition 2 years after diagnosis. J Rheumatol 1994;21:523–9. 11. Henriksson KG. Is fibromyalgia a central pain state? J Musculoskel Pain 2002;10:45–57. 12. Wentz KAH. Women with fibromyalgia: distress avoidance interferes with gaps in pain. J Pain Manage 2012;5:245–60. 13. Wolfe F, Smythe HA, Yunus MB, Bennet RM, Bombardier C, Goldenberg DL. The American College of Rheumatology 1990 criteria for the classification if fibromyalgia. Arthritis Rheumatism 1990;33:160–72. 14. Henriksson CM. Living with Fibromyalgia. A study of the consequences for daily activities Dissertation. Linköping, Sweden: Linköping University, 1995. 15. Nöller V, Sprott H. Prospective epidemiological observations on the course of the disease in fibromyalgia patients. J Negative Results Biomed 2003;2:1–6. 16. Robinsson L, Birnbaum HG, Morley MA, Sisitsky T, Greenberg PE, Claxton AJ. Economic costs and epidemiological characteristics of patients with fibromyalgia claims. J Rheumatol 2003;30:1318–25. 17. Carmona L, Ballina J, Gabriel R, Laffon A, EPISER Study Group. The burden of musculoskeletal diseases in the general population of Spain: results from a national survey. Ann Rheum Dis 2001;60:1040–5. 18. Senna ER, De Barros AL, Silva EO, Costa IF, Pereira LV, Ciconelli RM, et al. Prevalence of rheumatic diseases in Brazil: a study using the COPCORD approach. J Rheumatol 2004;31:594–7.

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19. Haq SA, Darmawan J, Islam MN, Uddin MZ, Das BB, Rahman F, et al. Prevalence of rheumatic diseases and associated outcomes in rural and urban communities in Bangladesh: a COPCORD study. J Rheumatol 2005;32:348–53. 20. Faroqui A, Gibson T. Prevalence of the major rheumatic disorders in the adult population in Pakistan. Br J Rheumatol 1998;37:491–5. 21. Wolfe F, Ross K, Anderson J, Russel IJ, Herbert L. The prevalence and characteristics of fibromyalgia in the general population. Arthritis Rheum 1995;38:19–28. 22. White KP, Harth M, Ostbye T, Speechley M. The London Fibromyalgia Epidemiology Study: comparing the demographic and clinical characteristics in 100 random community cases of fibromyalgia versus controls. J Rheumatol 1999;26:1577–85. 23. Bergman S. Psychosocial aspects of chronic widespread pain and fibromyalgia. Disabil Rehabil 2005;17:675–83. 24. Lindell L, Bergman S, Petersson IF, Herrström P. Prevalence of fibromyalgia and chronic widespread pain. Scand J Prim Health Care 2000;18:149–53. 25. Prescott E, Kjøller M, Jacobsen S, Bülow PM, Danneskiold-Samsøe B, Kamper-Jørgensen F. Fibromyalgia in the adult Danish population: I. A prevalence study. Scand J Rheumatol 1993;22:233–7. 26. Mäkelä M, Heliövaara M. Prevalence of primary fibromyalgia in the Finnish population. BMJ 1991;303:216–9. 27. White KP, Harth M. Classification, epidemiology and natural history of fibromyalgia. Curr Pain Headache Rep 2001;5:320–9. 28. Lawrence RC, Hochberg MC, Kelsey JL, McDuffie FC, Medsger TA Jr, Felts WR, et al. Estimates of prevalence of selected arthritis and musculoskeletal diseases in the United States. J Rheumatol 1989;16:427–41. 29. Magni G, Marchetti M, Moreshi C, Merskey H, Luchini SR. Chronic musculoskeletal pain and depressive symptoms in the National Health and Nutrition Examination. I. Epidemiologic follow-up study. Pain 1993;53:163–8. 30. Andersson HI, Eljertsson G, Leden I, Rosenberg C. Chronic pain in geographically defined population: Studies of differences in age, gender, social class and pain localisation. Clin J Pain 1993;9:174–82. 31. Hagen JS, Kvien TK, Bjorndal A. Musculoskeletal pain and quality of life in patients with non-inflammatory joint pain compared to rheumatoid arthritis: a population study. J Rheumatol 1997;24:1703–9. 32. Croft P, Rigby AS, Boswell R, Schollum J, Silman A. The prevalence of chronic widespread pain in the general population. J Rheumatol 1993;20:710–3. 33. Chaiamnuay P, Darmawan J, Muirden KD, Assawatanbodee P. Epidemiology of rheumatic diseases in Thailand: a WHO-ILAR COPCORD study community oriented programme for the control of rheumatic disease. J Rheumatol 1998;25:1382–7. 34. Darmawan J, Valkenburg HA, Muirden KD, Wigley RD. Epidemiology of rheumatic diseases in rural and urban populations in Indonesioa. A World Health Organisation international league against rheumatism COPCORD study, stage 1, phase 2. Ann Rheum Dis 1992;51:525–8. 35. Croft P, Rigby AS, Boswell R, Schollum J, Silman A. The prevalence of chronic widespread pain in the general population. J Rheumatol 1993;20:710–3. 36. Croft P, Burt J, Schollum J, Thomas E, Macfarlane G, Silman A. More pain, more tender points: is fibromyalgia just one end of a continuous spectrum? Ann Rheum Dis 1996;55:482–5. 37. White KP, Nielson WR, Harth M, Ostbye T, Speechley M. Chronic widespread musculoskeletal pain with or without fibromyalgia: psychological distress in a representative community adult sample. J Rheumatol 2002;29:588–94.

Section I: The developmental phase of symptoms

1 Fibromyalgia seen through the life histories of the afflicted women The aim of this chapter is to elucidate psychological functioning and psychological processes in women with fibromyalgia. Twenty-one females with fibromyalgia (aged 26–72 years) were interviewed. The qualities of the core concept “unprotected self ”, mirroring childhood conditions and adult psychological functioning were identified. Intense activity or hypomanic helpfulness was often used as compensating strategies of self-regulation in adult life. The phase of fibromyalgia was also marked by unprotected psychological functioning, an increased mental load as from crisis, reduction of cognitive functions, and somatic symptoms.

1.1 Introduction Fibromyalgia is a chronic pain syndrome without an established etiology and the classification and diagnosis are based on specific criteria. The criteria most widely used are those proposed by the American College of Rheumatology (ACR). These criteria include a history of widespread pain in all four quadrants of the body, lasting for 3 months or more, and pain elicited by digital palpation of at least 11 out of 18 specified bilateral tender points (1). A prevalence rate of 2% regarding fibromyalgia, and an obvious dominance in females (2), represent reasonably well a worldwide pattern. Besides the vast occurrence, fibromyalgia is a long-lasting condition and after 5–10 years, an overwhelming majority stricken by the disease have not recovered (3). Simultaneously, a more positive prognosis has been described for children of both sexes. Originally aiming at assessing the rate of fibromyalgia in school children, researchers also set out to include a two and a half year follow-up into their study design. They found that 73% of the diagnosed children had improved their health to the point of no longer fulfilling the criteria (4). A more positive prognosis has also been reported regarding sufferers with slighter symptoms and in patients being moderately physically active in their everyday life (5). The cardinal symptom of fibromyalgia is pain experienced as muscular pain. From a survey of 554 individuals with fibromyalgia compared with a group of 169 controls, it was found that the group with fibromyalgia reported significantly more somatic symptoms other than pain, such as concentration problems, sensory symptoms, swollen glands, and tinnitus, and a significant increased frequency of chronic cough, coccygeal and pelvic pain, tachycardia, and weakness (6). Moreover, the symtoms of fibromyalgia varied and 70% noted that their symptoms were aggravated through noise, light, stress, posture, and weather (6). Fibromyalgia is further connected to impaired sleep (7). The fatigue that is tied to the disease might be more troublesome than the pain itself.

12 

 1 Fibromyalgia seen through the life histories of the afflicted women

The fatigue is further described as a sense of almost constant sleepiness or as a feeling of being screened off (8). Daily life is largely influenced by fibromyalgia and those that suffer from the disease describe more intense feelings of illness than patients with a condition such as rheumatoid arthritis (9). Patients with fibromyalgia also report cognitive difficulties and when compared to patients with rheumatoid arthritis they also show higher impact in the psychosocial dimension at the same time as the impact in the physical dimension is lower (10). The maximal muscle strength and muscle endurance has been shown not to differ between fibromyalgia patients and controls but simultaneously a pattern of relentless muscle tone, evidenced by inability of patients with fibromyalgia to relax between muscular contractions was detected (11). Another pattern of inflexibility of physical functioning is the “flattened” response of the sympathetic nervous system to exercise identified in a group of patients with fibromyalgia (12). Research in the psychological dimension has often been carried out through quantitative measures employing general purpose instruments as the Minnesota Multiphasic Psychological Inventory (MMPI) when comparing different groups of patients with pain. Thereby differences between the fibromyalgia group and other groups have been shown (13–16). These test-profiles indicated that the fibromyalgia group suffers from somewhat higher frequencies of psychological difficulties than other groups of patients that are forced to handle long-lasting pain. A relationship between anxiety-proneness but not the state of anxiety and fibromyalgia was suggested by Hallberg and Carlsson (17). Similar results have been reported by Ekselius et al. (18). When compared to healthy controls, fibromyalgia-patients show, as indicated by the Karolinska scale of personality (KSP), higher levels of somatic anxiety defined as, for example, palpitation of the heart, sweating and shortness of breath parallel to self reported lower levels of more psychologically manifested anxiety “psychic anxiety”. Subgroups of patients, according to psychological functioning, have been documented regarding adaptive coping styles (19), self-esteem based on approval from others or on competence (20), and also in the dimension of being depressed/not being depressed in relation to fibromyalgia (16, 20, 21). Based on quantitative results from biomedical and psychological research Okifuji and Turk (22) suggested that fibromyalgia is an information processing disorder that is linked to a dysregulated stress-response system. These researchers picture a process of development of a “fibromyalgia prone response set” that precedes a later reaction to new stressors. This “fibromyalgia prone response set” might, according to these researchers, consist of heightened sensory awareness, negative affect, sick-role, low self efficacy, and physical conditioning. Qualitative and quantitative methods were combined by Toskala et al. (23) and resulted in a documented pattern in relation to fibromyalgia of difficulties harboring destructive affects through symbolization. In relation to the results these researchers discussed the alexithymia-concept. This concept concerns difficulties processing, understanding or describing emotions. A parallel to the above difficulties describing and processing experiences might be a finding by Perry et al. (24) who found that the correlations between

1.2 Our study 

 13

different pain-rating-scales of a group of patients with fibromyalgia were lower when compared to ratings made by a group of patients with rheumatoid arthritis. Some ratings were even negatively related, that is showing the “opposite” result than of others. These results were interpreted in terms of pain related to fibromyalgia being more complex or different from pain in syndromes with a mapped organic etiology. The phenomenon of a contradictory or paradoxical report might also be identified through experimental investigations (psychophysics) as by Harju (25). Harju found that all women in a fibromyalgia group reported cold stimulation (20°C–10°C) as heat, so-called “paradoxical heat”. The “paradoxical heat” phenomenon was also reported by five out of seven in a group of patients with central post stroke-pain but was only present in 6% of the healthy controls. Empirically founded theories on psychosocial processes involved in developing fibromyalgia are few in numbers. Simultaneously altered psychological functioning in connection to the syndrome is documented by way of other scientific approaches as cognitive difficulties (10, 26, 27), vulnerability to stress (6), fatigue (6, 8), or high levels of impact in the psycho-social dimension (10). Clinical psychological methodology, such as structural interviews, has not yet fully contributed by offering concepts for descriptions of psychological functioning as identification of emotional age or maturational levels of object-relations, structure of defence, alexithymic difficulties, or psychosomatic mechanisms. Clinical psychological procedures have not yet been employed in making analysis on a group level and has not yet been combined with theory-generating qualitative methodology. Therefore, psychological functioning preceding and paralleling the onset of pain and life with the fibromyalgia-syndrome need to be further investigated. Detailed descriptions of psychological concepts also need to be developed more specifically. The aim of our grounded theory study was, from the angle of clinical psychology, to elucidate psychosocial processes expressed by patients with fibromyalgia. In order to do so, women with fibromyalgia were given semi-structured interviews and invited to express their own views and experiences. The essential qualities found in these interviews were categorised in order to explain as much as possible of the area under study, which are the processes of developing fibromyalgia and the psychological functioning of the individual.

1.2 Our study The sample consisted of 21 women aged 26–72 years (mean 51 years), who fulfilled the ACR criteria of fibromyalgia. The participants were selected strategically in order to gain as much variation as possible according to age, education, profession, sick leave or working, early retirement and remissions, and relapses of symptoms (see Tables 1.1 and 1.2). The educational background of the women ranged from 6–17  years of schooling. Twenty of the participants either worked or had been established in the labor market.

14 

 1 Fibromyalgia seen through the life histories of the afflicted women

Table 1.1: Background data on 21 informants Age Number Family Married/cohabiting Divorced Widowed Number of children living at home Total number of children Education Upper secondary education University Employment/student Full-time Part-time Current level of working/studying Full-time Part-time None Number of years with fibromyalgia pain (mean) Treated for psychiatric/ psychological symptoms

20–35

36–50

51–65

66+

2

7

11

1

2

6 1

1

1 1

12 17

8 2 1 3 26

2

6

7 3

1 1

3 2

2 2

1 1 (maternity leave) 7.5

1 1 5 7

3 8 12

1 (extra work) 26

2

3

5

1

1

1

Table 1.2: Duration of generalized pain Years Number of participants

  ≤ 3

4–8

9–13

14–18

19–23

  ≥  24

5

4

6

4

1

1

Through their regular primary health care physician or through a private practitioner, women with symptoms that might fit the diagnostic criteria of fibromyalgia were informed about a research project on life history, stress, everyday life, and the development of fibromyalgia (28). Out of these women, eighty contacted the research group and visited the MD of the research group. Twenty-one of these women fulfilled the ACR criteria of fibromyalgia. In the next step, the women were interviewed by the clinical psychologist of the research group. The in-depth interviews lasted for 1–2 hours. The semi-structured conversation focused on onset of symptoms, variability of symptoms, the woman’s reflections upon her illness and upon herself as a person, her life-history, her life- and activity-style, and her relationships in the past and present. The preconception of the interviewer was in clinical experience from psychiatry and pain rehabilitation. The interviews were taped, recorded, and transcribed verbatim by trained employees of the pain clinic. They were further consecutively analyzed according to the method of grounded theory.

1.2 Our study 

 15

Qualitative methods are used both to shed new light upon areas that appears to be well known in order to gain new understanding and to explore new areas where little is known (29). In this study, qualitative method was used from both angles aiming at conceptualisation of data patterns and formation of a hypothetical model on relationships between concepts built. The protocols were analyzed in line with grounded theory (30, 31). The aim of this inductive method is to create concepts that can explain a phenomenon or a process. Grounded theory in this study was used from both the objectivist and the constructivist/interpretative angle as put forward by Charmaz (32). By combining these two angles the researchers responsibility is both to find out what is “out there” or present in data at the same time as the data is constructed or created during the interviewing situation and a process of constant strategic sampling decisions. The constructed data is also in line with the wording of Glaser (33), anticipated from the angle of studying behavior, the lived experience, the meaning of intentions and actions of the participants. Behavior is thereby not regarded as a person’s voice, but rather as patterns that a person engages in as an abstraction of the underlying cause of a pattern. Analysis of the interviews started with an open coding procedure that aimed at identifying qualities immanent. An interview was read through and then was coded twice. Codes from the two different rounds were compared and a final variant was established. An example is one interviewee answering the question on the circumstances of onset of generalized pain: “… I worked full-time [in a child care center], and it has become … increase childcare … and less staff at my work [compared to] when one has worked before. There were 17 small children and three in the staff and one could be alone after 4 p.m. and then there could be 8–9 left, many 1 year olds, one was just … Then it started, I had difficulties sleeping at nights, couldn’t fall asleep like …”

After two rounds the codes were: connects (herself) onset with increased work-strain, tormented by increased work-load, symptoms of stress, and difficulties sleeping. The informant then saw a physician in another matter and told the doctor that she had difficulties sleeping: “[The doctor was referred to] … you are over strained and should be sick listed for two months she thought, but no, no I can’t stay home. I am like that, I wasn’t home for one day, then. You like … you got no deputy … of course you could not be at home. And then it continued and I got pain in the heart.”

After two rounds the codes were: seen as vulnerable (by another person), does not accept help, close to her mission, closeness to the needs of others, does not protect herself, symptoms of stress. These substantive codes that reflected the qualities, substance and meaning in the data, were continuously identified, compared and categorized. The codes from an interview were condensed into categories concerning this

16 

 1 Fibromyalgia seen through the life histories of the afflicted women

particular interviewee. From the quoted interview an “interview specific” category “self-destructive” was built, composed by the codes seen as vulnerable but does not accept help, does not protect herself, the needs of others, ignoring serious symptoms life threatened, the mission in focus, does not take care of herself, does the work of others and working on her break. The amount of different categories stemming from a single interview was looked through and reduced through clustering of preliminary categories reaching a higher level of abstraction. Continuously through this process the categories were compared to data. Relationships between categories were explored and a model, mirroring a process, was built based on each interview. This way the procedure of coding around the axis of a category was also carried through. That is, the relationships between categories and subcategories were built into the models. The categories of the first 13 interviews were compared, as were the 13 models of the course of events. New overall categories (new level of abstraction), of the first 13 interviews, were formed on a group level, clustering categories that mirrored qualities present in the interviews. Categories representing similar qualities of strategies, such as ignoring affective signals, self-regulation dependent on others, and activity, were clustered into the higher order category compensating strategies. This higher order category or concept describes the attempts of the women to compensate for an underlying experience of helplessness and deficiencies regarding understanding of their own needs and need for self-protection. The final eight interviews were coded openly in order to find new qualities not yet represented in the emerging overall categories/model. The coding procedure also aimed at developing and specifying the content of the already formed categories through new subcategories. Sampling and coding ended when nothing substantially new was learned from coding procedures that is the phase of saturation of categories/model. Memos of, for example, hypothesis on consequence, sequence, and other relationships were also taken throughout the entire coding process. The third step of the inductive process was then to identify a central phenomenon, or core category, to which the remaining categories were related. This is how a hypothesis (theory) on the explanation of the data was built. In all phases of analysis, the forming of categories/concepts, the relationship between categories/concepts and the core concept were hypothesized and tested in the data. After the first ten interviews were completed, the sample was scrutinized and found to be homogeneous according to age (around 50 years) and educational level/ profession. In order not to mirror life of women in particular, and rather similar social and professional settings instead of psychological functioning and development of fibromyalgia, the sampling was directed towards higher education, diverse sectors of professional life, positions of management, older and much younger women. Sampling continued alongside analysis of data and reasonable heterogeneity was achieved in the wished for direction. All along the process of analysis and emergence of the result, coding, sampling, and model-building was discussed with a senior researcher. Also, as part of the process, and as the results emerged, selective sampling of literature was made. Literature on dissociative tendencies and child maltreatment was reviewed.

1.3 What did we find? 

 17

Self-regulatory strategies visible in data also resulted in comparisons to a documented difficulty regarding the cognitive processing of emotions, so-called alexithymia.

1.3 What did we find? From the interviews with the women, a lifelong pattern emerged of exposure to a mental as well as a physical load. This exposure was throughout both childhood and adulthood, paired with insufficient protection in relation to potential mental and physical load (Table 1.3). The childhood pattern combined high levels of strain with low levels of support, comfort and shielding from the adult world, mostly through parental figures. This pattern could be summed up in terms of having an overstrained or overexposed self as a child. In line with the saying that “the child is the father of the man”, the corresponding pattern of the adult woman was of severe difficulties regarding protecting herself against too high levels of mental and physical load. This lack of self-protection also included qualities of not having sufficiently developed the ability or the sense of right to evaluate the present life situation and create good conditions for herself. The adult pattern also included difficulties regarding making future plans to improve conditions. The pattern further meant that the women themselves also sought out

Table 1.3: Components of the core concept unprotected self and the higher order category compensating strategies Unprotected self Dimension: overstrained as a child Strain/abuse Trauma suffered in loneliness Exploitation Intense stimulation/insufficient shielding Being invaded Deprived of contact/unsupported Lack of intergity/symbioses Overstimulated/unshielded Helpless role models

Dimension: unprotected adult self continued Impaired self and other model Difficulties creating a distance Self-destructiveness Stern self-criticism Normality

Compensating strategies Hypomanic repair Motoric self representation Self-suppression/false self Dimension: Unprotected adult self Dissociative functioning Difficulties handling emotions and stimulation: Activity – negative emotions or stimuli ignored Strength/being in control – signaling function impaired, easily invaded, delicacy Redirection of perception A threatening world of experiences Suppressed thinking Insufficient defense operations Conflict handling through action Difficulties in problem solving and mourning Ignoring emotional signals Impaired autonomy/self definition Self-regulation dependent on others Alloplastic difficulties/helplessness

18 

 1 Fibromyalgia seen through the life histories of the afflicted women

situations or activities that meant self loading. Differently expressed, they voluntarily found exposure to strain. This exposure was primarily in the form of physical load but could also mean mental load as in relentless tasks and missions. The meaning of this pattern will be explored further in the section on unprotected self in adult life.

1.4 An overstrained self as a child The phenomenon of facing high levels of mental and physical strain during important years of developmental challenges is diverse. Under any circumstance during the developmental years a child has to build an understanding of herself as a person and of other significant persons. She has to further develop her view of relationships to other people, her understanding of the life of adults (that is her own future), and of the world. The above heading illuminates an environment during the years of developmental challenges that was marked by exposure to mental load on the behalf of the child. Overstrained as a child means a notion of being overwhelmed and helplessness parallel to being isolated regarding psychological needs. The qualities that pertain to the conditions surrounding an overstrained self vary according to a certain extent on the source of the strain but the pattern of being overstrained and also insufficiently supported as children was a recurring theme in the narrations of the interviewees. Otherwise expressed, in situations of exposure in the families, this was logically paired with lack of emotional support as comfort through explanations or conversations on frightening experiences with the child. “Somebody ” at an adult age just simply sheltering the child was missing. This meant that, in a way, psychological resources of the unaided child were in isolation occupied with tasks concerning experienced strain and psychological pain. “What daddy said was the law. There was a constant arguing about money. My mother thought she did not get enough. And my mother always said on Mondays that they were getting a divorce. But also when I think about it that we went to Spain every summer. And I remember that every time when we should go, my father started, and there was a fight before we should go and then he threatened and said I will cancel the trip … and that was a bigger threat for me than when my mother said what she said because I so much wanted to go, much more threatening. Int: What did you feel then? Difficult to say if I felt sad or angry, I don’t know but I thought it was unpleasant and what was unpleasant was that I felt that he had the power. That was what I thought was unpleasant.”

Other women talked about suicide threats from parents during arguments. A well known and discussed phenomenon in today’s world is the exposure of children to domestic violence. This phenomenon was also among the different qualities of exposure to mental strain in the narrations of the women. As a child, an interviewee might have witnessed physical or psychological abuse from one parent towards the

1.4 An overstrained self as a child 

 19

other, or herself been the victim of physical or verbal abuse. In case of physical or emotional abuse between parents, the child was also exposed to experiencing the helplessness or ineffective life strategies of one or both parents. When this was the case, the little girl could be said to be without role models or to be left with helpless role models. This in turn puts “doubled” strain on the child. In case of abuse directed towards the child itself, one must bear in mind that this was directed to the girl from someone whose role should have been to secure, shield, and protect the child from too high a level of emotional strain. The source of safety was then instead a source of fright and emotional pain. The source of safety was thereby missing. An example of this pattern is mothers repeatedly telling their daughters that they were not “a wished for child”. “I got to know from my mother that I was a not wished for child and was told during the years that I never brought any joy or was of any use. I have not thought about that much … but I have started to think about this since I got children of my own. What if I would start to tell them that we actually did not want them. How would that feel to them? …”

Exposure to mental or physical load could also be the result of tragedy or an accident beyond the reach of the adults surrounding the child. The trauma was suffered in loneliness though. It can be exemplified with the death of a parent and a preschool girl that was told of the loss but then left in solitude to deal with this and relying on her own resources. Other forms of mental load that the child might have to carry were notions of different kinds of emotional sufferings of one or two parents. A parent might also have suffered from physical disease and simultaneously have had to carry on with hard physical labor in order to survive financially. In the interviews were narrations regarding exploitation in the form of child labor. “my mother fell ill when I was 11 years old … she was very demanding … she wanted things and you just had to do it … she was quite old when she became a mother … I was the oldest … it has always been work all the time. At the farm there was just work all the time.” “I cannot remember that I as a child at any occasion got any help from my mother of any kind … when I was little I had to drag my younger brother along with me all the time. I could never be alone with my friends. My mother wanted me to take him along with me all of the time.”

A well known form of psychological strain put on a child is when the child is mentally invaded by the parent and is robbed of the sense of being a person in their own right with wishes, plans, and self control. In such a situation, the parent might decide the hobby of the child and also make impossible choices of the child herself. The hobby could also be taken over in the sense that it was controlled in detail by the parent. A musical instrument could be practiced not a certain amount of time a day but instead until the invading parent was satisfied on each occasion. Over this sufficient degree of satisfaction of the parent the child had no control at all.

20 

 1 Fibromyalgia seen through the life histories of the afflicted women

The child might also have met expectations of carrying great responsibilities. One informant said that she was left at home in evenings at 7 years old looking after her 1-year-old sibling when her parents went to parties. The smaller child cried constantly during such an occasion. The interviewed woman said that she saw it as a personal failure that she had not coped better with the baby. She never considered telling her parents how the babysitting had gone. She also explained about her loneliness as a child and described how she spent a lot of time alone in her room not socializing with the rest of the family. She saw it as her responsibility not to bother her parents about anything that she found troublesome as they had so many problems in their marriage. When a child is being psychologically invaded, insufficiently supported, and left to handle overexposure of mental or physical strain, this might result in lack of integrity on behalf of the child. This dynamic can be grasped and described from different angles. In order to break away from a very close relationship with a parent from early childhood, the child needs energy and security enough to use empowering aggressive energy “guts” to develop an adult identity and psychological autonomy. In order to break loose from the parents and develop a sense of autonomy a certain amount of loneliness needs to be tolerated in order to preserve integrity. To create a good life the inbuilt compass of diverse affects needs not to be feared but used. A pattern of this process being attenuated was present in the interviews. An informant told of herself in her late teens that: “I went to work in the morning and then I went straight home [to the parents home] to relieve my mother [taking care of the ill father] … I know my workmates said that I ought to leave home but then I said what would it help if I lived someplace else and knew that father is ill and mother works herself to death, I thought that [what the workmates said] was the most stupid thing I ever heard.”

1.5 An adult woman with an unprotected self; high load, self loading and dissociation of unmanageable mental content To have an unprotected self as an adult women means not to have fully developed skills regarding handling the inner life of the individual. This pattern is equally valid regarding memories of past experiences as regarding the affects or emotions that accompany these experiences. To have an unprotected mental and corporal self also constrains the use of the signaling function of the affect life when evaluating and orientating in relation to present and future life situations. These constraining effects also come to light when situations or conditions needs to be changed, affected, left, or worked on. The quality of the unprotected self in adulthood is expressed through different patterns of psychological functioning portrayed below. A somewhat dominating pattern was that of the women having difficulties regarding feeling secure with the use of their emotions in their everyday lives. The so-called negative emotions of fear or sadness were ignored. The same applied to negatively charged stimuli as in too big a challenge from tasks ahead of you or bodily signals as getting tired. Thereby, the signaling function of the life, tiredness and pain was impaired. Another aspect of this unprotected “candle

1.5 An adult woman with an unprotected self 

 21

in the wind” pattern regarding psychological functioning was an impaired capacity regarding mastering attention in order not to be overwhelmed by stimuli. Parallel to this was an overall quality in the interviews of the women being easily invaded by the emotions of others. In a sense, the women were as insecure regarding the emotional hardships of others with the important distinction that the worries and needs of others had an enormous impact on the interviewees as opposed to their own silenced signaling system. When a signaling system as the affect system is screened off, or muted, there is plenty of space in consciousness to receive or import what is expressed from people more or less close to a person. Also, a proneness of easily recognizing helplessness or other kind of emotional strain, may result from the “shutting out” of own experiences of mental or physical strain, thereby, these experiences also reentering the mind. Under the above conditions, it is no wonder that a pattern of delicacy or interpersonal vulnerability is present. This could be exemplified in terms of the interviewees feeling unconfident about their rights to say no to other people due to the potential of “ hurting” them. Together with unfamiliarity with parts of their own affect life, difficulties in coping with emotions or bodily signals appeared in the narrations. The need to work through experiences including the accompanying affects and to mourn could not be met by “a working psyche”. Also, the need to ward off mental material in a progressive self-caring and flexible way could also not be fully met instead causing burdening psychological pain and the experience of a threat of being overwhelmed. This specific psychological dynamic could be described with partly one informant’s own wording as if she does not “shut off completely” then she will be “stricken by it pretty much”. The way she understood her own functioning was that she could see her own life had been “rather messy”. She could also think of other similar reasons as well. The interviewed women gave words to living with the presence of a threatening world of life experiences. These experiences included having been attacked verbally or physically. Besides this, they had had to handle notions of loneliness, worthlessness, vulnerability, or of being unsheltered. A quality of insufficient defense-operations relates to the incapacity, evident in the data, to handle unpleasant mental or external events through efficient psychological means such as processing, self-comfort, or repression. The interviewed women seemed partly to be left with the options of being active or to seek external stimulation in order to escape difficult subjective experiences. “When one has felt ill at ease, one has started to clean, to feel better instead of just being apathetic so I think that I have felt better by doing something.”

If the main option regarding handling thoughts and emotions is to focus upon an activity or a work task or seeking to be captured by some kind of stimulation from the outer world these strategies are heavily taxing on both body and mind, risking over-exertion. The difficulties handling inner life through their own mental resources

22 

 1 Fibromyalgia seen through the life histories of the afflicted women

could show themselves as difficulties by not using sick leave in spite of severe physical difficulties. This in turn could contribute to a mounting of physical and mental load. One interviewee refrained from sick leave because of this “outer world dependence”: “I would very much want someone to keep me company but there are not very many people in their homes in the middle of the day.”

A closely related phenomenon regarding incapacity of psychological processing is difficulties in problem-solving and mourning. These qualities were also visible in the interviews. Unpleasant feelings or thoughts might be important cues or messages about the need to make changes of some kind or to further analyze a situation or a relationship. If not processed, such cues or signals get repudiated. Repudiation in turn might be as a result of the closely related difficulties present in the interviews, of not being sufficiently able to create a distance between oneself and a problem, a challenge, or a demand. A very clear example of lack of distance is how one woman eventually experienced severe fibromyalgia symptoms after a period of an intensive increase of effort at work. In this context she described how her employer had increased the demands on her. During the interview she was asked to describe these events and she stated: “ … really one does not think that much but just work on and increase demands on one self … ”

Childhood and adolescent years are marked by a process of distinguishing oneself as a person from others. This process in most cases takes place inside a group of people that hopefully constitutes a safe environment, that is, the family. Through a process of separation from the parents and a process of distinguishing oneself from the siblings, the individual can develop a platform of a sense of self that feels real. This platform also means autonomy regarding wording wishes and also a capacity to manage interpersonal conflicts. When wishes or notions collide, the individual needs to be able to be her own best friend. If this notion is not to hand feelings of being “small”, deserted, or scared arise instead. In other words, if you know “ who you are” and love that person, you can stand by yourself and not be at every moment dependent on others understanding or supporting you. If this important process has not been sufficiently completed, this might contribute to impaired autonomy and impaired self definition, as identified in the narrations on life before fibromyalgia. Moreover under these circumstances it becomes difficult to stand by oneself and implement wishes, etc. In the narrations of the interviewed women there were obvious patterns of these kind of difficulties. Alloplastic difficulties/helplessness are qualities that reflect a lack of necessary effort

1.5 An adult woman with an unprotected self 

 23

and skill in relation to changing the conditions of one’s life. These qualities also include a lack of tools, self protection, and decisiveness on the part of the women in relation to taking care of themselves: “I answered for it myself … have always puzzled and bustled and hurried and hurried and picked up and fetched [children] and cleaned and worked and cooked and then I have been very particular, I want to feel fully in control of this with clothes and the house and have not gotten much help. My husband has not asked me to be this particular … but I never have sat still and this is what a friend of mine tells me now but then I did not think much about that because then I have problems … have always been out walking a lot … and if we were to plan this after work you know … if I called her then I used to tell her that I want to go now since if I sit down I won’t be able to rise you know …”

The phenomenon of impaired autonomy/self definition also came to light as, for example, incapacity in relation to defining oneself as a needing and feeling person. … your own thoughts around your weariness? I might have understood … I don’t think so … I had to carry a lot of responsibility for the family … but I was so happy … so incredibly happy about my family, it has meant so much … such incredible joy in my family so that …”

A closely related and important quality present in the narration was that the model of oneself and another person was impaired. That meant that the individual has difficulties seeing both good aspects and bad aspects of a partner or a relative, and from that judge whether the relationship was desirable or satisfactory for them. In case of husbands they could be described as, for example, workaholics, emotionally remote, or both. These characteristics were presented in a neutral fashion or as a mere fact. An overall pattern of self-destructiveness was present in the interviews. This pattern label corresponds to negligence regarding not acting in a protective way in relation to oneself. A sufficient amount of self-care, including care for one’s own health was also missing in the narratives. If an informant had lived under severe marital hardships or employed high speed activity, or intense effort-patterns, these strategies are also all examples of the quality of self-destructiveness as neither the difficult conditions nor self loading behavior was thought of as something that needed to be changed or escaped. The interviewees also carried signs of being destructive in relation to oneself in the form of stern self-criticism as brutal self-accusations, or the women might also have lived their adult lives with high demands on themselves as to continue working at every cost. In spite of the difficulties related above the interviews contained a dominating pattern in the analysis labeled “normality”. This quite normative label stands for the genuine strivings of the interviewees in directions of self-realization as forming loving relationships. They truly also enjoyed the company of other people. The women could in no way be regarded as being emotionally withdrawn or not sociable. The unprotected quality of their psychological functioning in their relationship with other people

24 

 1 Fibromyalgia seen through the life histories of the afflicted women

instead came to light as being “overly not critical” and not accusing or selfassertive. A further example of being normal is that the interviewed women often enjoyed and sought self-realization through creativity in activities such as painting pictures, or making their homes nice through sewing different items, painting on fabric, etc.

1.6 Compensating strategies The interviewed women used compensating strategies in the sense that various measures were employed in order to deal with different aspects of having an unprotected self. The aim was to avoid coming into contact with notions of helplessness, vulnerability, and loneliness that is the experience of an over exposed self in a world lacking support established during childhood and staged during their adult lives. The women avoided or counteracted emotionally painful notions as helplessness and the avoidance was carried out in several different ways. One obvious avoidance pattern in the interviews was trying to “repair” other people. This commitment, ideology and over identification with the needs of others was carried out in a brisk and self-confident manner as in phantazising of being a strong person that has a large amount of energy to give away and no real need to rebuild resources of energy or guard own needs and health. Through this orientation, the women created a personal universe of mending, putting things right and they themselves being helpful. This also included being able to meet the needs of those in need: “… always been there for others and always, all the time, helped others, like. And if you wanted to do something for yourself it had to be in the little time that was left over.”

A dominating quality in the narrations was of the women communicating how they used intense, relentless, or both intense and relentless activity, as a way of controlling their notions of themselves and the world. This was especially true regarding warding off or counteracting notions of loneliness, being unprotected or other aspects of a threatening inner world of experiences. A woman whose childhood was marked by death, losses, and rejection said: “I have always been a girl full of energy … the one that liked to work and always been very speedy … having 7000 irons in the fire all the time … I have never thought that one can work too much … I have just felt good from it … today I know my limitations … then I should just stand up to [the limitations] but I can’t today.”

The qualities of warding off notions of vulnerability through being active meant creating a form of an automatic switch to an active stance and had a close parallel in a great importance being placed in experiencing oneself as being very mobile and strong. This quality might be labeled as to having a motoric self-representation.

1.6 Compensating strategies 

 25

One woman spontaneously gave examples of how strong she used to be before she fell ill. Another explained about how she chose professions marked by physical load: “I have always had typical men’s jobs … had to work at the same pace as them … I’ll show them that I can do it. They shall not be able to point their fingers at me, she won’t cope. You had to show that you could keep up …”

This kind of emphasis put on motoric competences as strength and freedom of the body clearly constitutes a contrast to the problems the interviewees had in relation to the competence of psychological autonomy. Psychological autonomy could in this context be exemplified in terms of being able to put words on one’s own needs, being one’s own best friend and being able to carry through a reasonable amount of important goals in life. Instead of such a clear mental representation or awareness of the own needs and wishes the psychological image of the women themselves were marked by suppression as in being unclear, blurred, covered-up, or ignored. If the image of the own person is suppressed or distorted, this mainly corresponds to signs in the narrations of avoidance of mental pain carried out through not recognizing oneself as an individual that has needs and thereby also might endure suffering. This phenomenon was very clearly expressed by a woman who had made endless efforts to put her life right but was overwhelmed by hardships, such as leaving her country and being stricken with a serious disease: “I have no life here, I believe … to do something good is my life … I tell my children, I have no life of my own.”

Another example of the pattern of “blurring” the image of oneself as a person was when women with strainful experiences might put emphasis on a self-image marked by qualities of optimism when asked to describe their own personality. Qualities in the narratives also suggest that the lives of the interviewees held dissociative functioning, that is, notions were kept apart as were emotions and emotions from notions. On a conscious level psychological processes were disrupted instead of different notions meeting and being dealt with. One example of disruption in consciousness is arriving at work not remembering big parts of the journey to get there. This quite common experience means that a person experiences the journey but then jumps into another compartment of consciousness dealing with other matters and the journey is lost to the memory scan in the present compartment. More interestingly, there was also a more general tendency of dissociative functioning in the narratives as thoughts and emotions being disclosed from conscious perception as the interviewee’s emphasizing a self-image in terms of a motoric self. Another example regarding dissociation are repeated tales of a life marked by being preoccupied with some kind of activity preferably in a high speed and also stating that that was something that made you feel good.

26 

 1 Fibromyalgia seen through the life histories of the afflicted women

Another compensating strategy visible in the narrations was of trying to picture oneself as a very strong person and a person that was in control. This way of processing everyday experiences aimed at being able to control what is not controllable and also to be able to manage what is not manageable as living in a physical abusive relationship. Another example of the strength and control notion was to repeatedly expose oneself to an enormous amount of strain (as corporal effort) that easily finds its clear parallel in the above childhood patterns of unmanageable exposure to mental or physical load. In this way, the strength and control pattern may be contrasted to the childhood experiences of unmanageable mental or physical load, this time controlling the exposure by seeking it yourself. Difficult notions could also be dealt with through mental measures, such as repression or preparing for adequate action, but through redirection of perception or just looking the other way. To handle negative mental experiences by refocusing upon the outer world in order to push away stimuli from the inner world had at the same time a consequence that the protection against over stimulation and exhaustion was undermined. A woman with a childhood marked by a helpless and severely ill mother and the death of a sibling states: “I should plant bushes … on my conditions … I got this terrible pain when I was digging but I thought that I already know about my back pain … [do you then take breaks?] … no, I go on. [Why?] Because I want to finish… [How deep the holes?] … Fifty centimeters … 50 holes … in one afternoon …”

The interviews also bore signs of the interviewees suppressing their thinking in order to avoid the emotional pain that might come from scrutinizing their own life conditions. The necessary inner dialogue that concerns the needs and the conditions of life might be suppressed for the sake of avoidance: “ … it is madness to have worked as one has done really but when one is in the middle of it … one does not think like that … ”

To handle conflicting needs through action was a strategy that compensated for the unprotected self functioning and accompanying difficulties being self-assertive. An example of this pattern is to do what others wish you to do. Difficulties handling negative affects and negative affects signaling the need for attention might also be taken care of through ignoring these affective signals: “I got pains in the heart on many occasions and even went to work … [the work-mates] thought at work that I should go to the hospital … I was hospitalized for a suspected heart-attack … but then I got on with working without taking sick leave …”

Before this occasion, this particular women was seen by a general practitioner and was offered sick leave as a result of stress. In her own words she then renounced that

1.7 Discussion 

 27

offer as she was preoccupied with notions of the difficulties this would cause her employer recruiting a deputy. An impaired capacity regarding consoling or encouraging oneself was compensated for through taking care of the emotional life, so-called self-regulation by being overly dependent on other people. Many of the women emphasized how much they enjoyed the atmosphere of laughter during meal or coffee breaks at work. This pronounced need to “import” the joyous emotions of others or in other worlds identifying with them or the need to stay in this kind of close contact with others implies a enhanced dependence in relationships, not the least by a group of co-workers. A pattern in data of mental load being added to an already high level or having escalated at the time of onset of generalized pain appeared in the interviews. This particular pattern will be accounted for in chapter 4 and a quality of reduction of cognitive functions that paralleled the onset of pain will be accounted for in chapter 5.

1.7 Discussion One tentative interpretation of the results from the interviews is the forming of psychological functioning that, in turn, increases the possibility of mental and physical overload and an accompanying somatic alteration and reactivity patterns, that is, fibromyalgia. This kind of interpretation relies on the third step of coding aiming at building a data pattern theory describing a process including shapers regarding this process (34). Categories become shapers in a process and as shapers also reflect coded data patterns. The third step of coding indicated not a simple causative relationship but rather a reciprocal and reinforcing relationship of the core concept unprotected self to three higher-order categories. This means that having an unprotected self resulted in the use of compensating strategies and a gradual exposure to an even further increase in mental load. This increase in mental load was, in turn, accompanied by a reduction of cognitive functions that paralleled the onset of fibromyalgia symptoms. The qualities of increase in mental load and reduction of cognitive functions will be presented in other chapters. A reciprocal process represents the stage of fibromyalgia. This stage is also shaped by the functioning of the unprotected self and is impressed by altered somatic functioning, including fibromyalgia symptoms. The shapers of increase in mental load and the state of reduction of cognitive functions also take part in the process. This tentative interpretation pictures a somatic process in which the psyche plays a part of being a source of strain regarding the organism as a whole, and in terms of the individual being mentally unprotected in relation to load of stimuli and affects, and sometimes also physical strain from childhood on. This means that at a certain stage the individual becomes a victim of not being able to cope with the exposure to an increased level of stimulation or physical load. Thereby, a cognitive disintegration and somatic alterations come about. The stage of fibromyalgia is then under the influence of a vicious circle of

28 

 1 Fibromyalgia seen through the life histories of the afflicted women

impaired cognitive functioning, for example, inability to handle stress, unprotected psychological functioning including an exhausting level of activity or crisis from blocking of compensating strategies together with load from an altered lifesituation, pain, fatigue, and deprivation of sleep. In the portrayed and suggested process, fibromyalgia is fueled by reciprocal processes. Accordingly, the presence of such processes could be considered when multidimensional programs are being offered to this large group of patients. Furthermore, in order to shed light on this process and on the phenomenon of recovery, former patients with fibromyalgia could be invited to relate their experiences.

1.8 Why women? Could the present result regarding psychological functioning in women with fibromyalgia be supported by documented coping strategies specific to the female sex? Does the use of rigid strategies of activity, self regulation through others, hypomanic repair/helpfulness in relation to stress and vulnerability correspond to documented gender differences? Page (35) documented psychological patterns of preschool children of both sexes that had to deal with a less satisfactory attachment to their fathers. These were children of divorced parents and aged 56 months. Page found that boys with the poorest internal representations of the father as a parent were the most socially incompetent while girls of the same category instead exhibited a social behavior that was characterized as being overly responsible to peers. Further, Page et al. (36) related that pre-school girls, contrary to pre-school boys, used compensating strategies of responsibility for their fathers’ well-being when they had an unsatisfactory relationship to them. The use of specific compensating strategies of the model, could also be compared to a bio-behavioral stress response patterns discussed by researchers in terms of being specific to women. Although the “fight and flight” response may characterize the primary physiological responses to stress in both males and females, the responses of females to stress are more marked by patterns of “tend and befriend” (37). These patterns are thought to have selectively evolved to maximize the survival of the self and the offspring. The befriending pattern promotes the affiliation with social groups in order to reduce risks. The tending (attachment/care-giving) responses to stress down-regulate the hypothalamic-pituitary-adrenocortical (HPA) responses to stress in both the mother and offspring (37).

1.9 Chronic illness The inductive method of grounded theory is used in the service of conceptualization, in this case of latent patterns of behavior in data, as described by Glaser (33). In this

1.10 Limitations 

 29

handicraft process of forming abstractions in relation to data patterns (conceptualization), the measure of using a control group is not applicable. Instead, results from relevant qualitative studies might offer some possibilities of contextualization and comparison. The research questions not always being comparable can simultaneously bring substantial limitations. Signs of notions on not being able to meet standards of femininity were documented by Charmaz in relation to chronic illness (32). Glaser further documented that sick women got emotionally, if not completely, abandoned more quickly (than men) by their spouses and had to depend on children and friends for support. These were not patterns of the present study. A consistent pattern of the present study that contrasted to previous research on chronic illness (32), was that the women connected onset of their illness to a strainful situation in life.

1.10 Limitations The aim of this study was to elucidate psychological functioning in women with fibromyalgia. In order to do so, a strategically selected sample of women diagnosed with fibromyalgia were interviewed in-depth. Regarding both sampling and transferability of results, the limitations of this study need to be shown. On behalf of the participants, the present sampling procedures relies on a certain amount of initiative. Thereby, psychological functioning marked by a more passive stance, more “passive” women, more depressed women, or more “demoralized” women could be at risk of being excluded from this kind of study. The sample further held other relevant characteristic as of being, or having been, well established on the labor market, not being socially isolated, and having lived a life marked by qualities of normality. These characteristics need to be taken into account. As a result of characteristics of other groups, displaying a high prevalence of fibromyalgia as HIV infection and intravenous drug use (38), the characteristics of social adjustment and aspects of initiative of the present sample seem not, in a simple way, to be possible to link to the phenomenon of fibromyalgia in itself. Besides the characteristics of the sample, the characteristics of the researcher also need to be taken into account when evaluating the results. In relation to a qualitative method, the question cannot be posed whether the researcher affects the research process and if such an effect can be prevented. Instead the steps of analysis and the effects of the researcher need to be assessed shared and stated openly (39). Preconceptions should be stated openly (39). In the aim of this study lay the preconception of the possibility of some kind of psychological functioning influencing the development and maintenance of fibromyalgia. Also, the first author had, when earlier meeting patients with fibromyalgia, as a clinical psychologist, reflected upon accounts of an over-active life-style in some women. Further, even though inductive procedures were used in order to create categories, these procedures must also be regarded as interpretative and influenced by, for example, knowledge on developmental psychology, psychophysiology, and clinical training. Clinical training constituted a possibility in

30 

 1 Fibromyalgia seen through the life histories of the afflicted women

discovering patterns through contrasting them to patterns of, for example, groups with psychiatric diagnoses, comparing being a key technique discovering patterns using grounded theory (30). The participants living a life influenced by ill health and pain might induce depressed mood and need to be considered from the angle of affecting their recall in the direction of inflating hardships. Is the present result (see Table 1.3) based on mood induced memory bias or other forms of memory distortion? Depressed mood was by Brewin et al. (40), after reviewing the evidence, not judged to create systematic distortion of early experiences instead pointing at the tendency of, for example, child abuse survivors to minimize the impact and nature of the assault. A similar tendency of false negative memory (underestimation), was confirmed in prospective studies by Widom and Morris (41) and Widom and Shepard (42), pointing at a general inclination in humans to repress stressful events. Another possibility, of painful stimuli in themselves, contributing to a false darker picture, of past experiences in relation to fibromyalgia, need also to be considered. Accordingly, quantitative attempts on adversities along the lifespan in relation to fibromyalgia have used other groups of patients with long-lasting pain as controls. In accordance with the present result (see Table 1.3), Poyhia et al. (43) and Walker et al. (44) compared patients with fibromyalgia with other patients with pain and found that patients with fibromyalgia report more adverse experiences throughout life than other subjects with chronic pain. The use of other groups of patients with long-lasting pain as controls, seem the most reliable when trying to rule out mood bias when investigating psychological characteristics in relation to fibromyalgia. The collection of data from an interview situation should also be considered from the angle of suggestive procedures, creating “pseudo memories” (45). In this study, suggestion was counteracted by the interviewing technique. Questions were asked in a neutral and taciturn fashion as possible in order for the interviewees to deal with the presented topics from the point of view of their own resources, functioning, and experiences.

References 1. Wolfe F, Smythe HA, Yunus MB, Bennet RM, Bombardier C, Godenberg DL. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia. Arthritis Rheum 1990;33:160–72. 2. Wolfe F, Ross K, Anderson J, Russel IJ, Herbert L. The prevalence and characteristics of fibromyalgia in the general population. Arthritis Rheum 1995;38:19–28. 3. Olin R, Schenkmanis U. Fibromyalgia. Symptoms, Diagnoses, Treatment? Uppsala: Sveriges Radios Förlag, 1996. 4. Buskila D, Neumann L, Hersman E, Gedalia A, Press J, Sukenik S. Fibromyalgia in children. An outcome study. J Rheumatol 1995;22:525–8. 5. Granges G, Zilko P, Littlejohn GO. Fibromyalgia syndrome: assesement of severity of the condition 2 years after diagnosis. J Rheumatol 1994;21:523–9.

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6. Waylonis GW, Heck W. Fibromyalgia syndrome. New associations. Am J Phys Med Rehabil 1992;71:345–7. 7. Moldofsky H. Sleep and the fibrositis syndrome. Rheum Dis Clin North Am 1989;15:91–103. 8. Söderberg S. Women’s Experience of Living with Fibromyalgia: Struggling for Dignity. Dissertation. Umeå, Sweden: Umeå University, 1999. 9. Bengtsson A, Henriksson KG, Jorfeldt L, Kågedal B, Lennmarken C, Lindström F. Primary fibromyalgia. A clinical and laboratory study of 55 patients. Scand J Rheumathol 1986;15:330–47. 10. Henriksson CM. Living with Fibromyalgia. A Study of the Consequences for Daily Activities. Dissertation. Linköping, Sweden: Linköping University, 1995. 11. Elert JE, Rantapää-Dahlquist SB, Henriksson-Larsén K, Lorentzon R, Gerdlé B. Muscle performance, electromyography and fibre type composiotions in fibromyalgia and work-related myalgia. Scand J Rheumatol 1992;21:28–34. 12. Van Denderen JC, Boersma JW, Zeinstra P, Hollander AP, van Neerbos BR. Physiological effects of exhaustive physical exercise in primary fibromyalgia syndrome (PFS): is PFS a disorder of neuroendocrine reactivity? Scand J Rheumatol 1992;21:35–7. 13. Payne TC, Leavitt F, Garron DC, Katz RS, Golden HE, Glickman PB, et al. Fibrositis and psychological disturbance. Arthritis Rheum 1982;25:213–7. 14. Wolfe F, Catley MA, Kleinheksel SM, Amos SP, Hoffman RG, Young DY, et al. Psychological status in primary fibrositis associated with rheumatoid arthritis. J Rheumatol 1984;11:500–6. 15. Ahles TA, Yunus MB, Gaulier B, Riley SD, Masi AT. The use of contemporary MMPI norms in the study of chronic pain patients. Pain 1985;24:159–63. 16. Ellertsen B, Vaeröy H, Endresen I, Förre Ö. MMPI in fibromyalgia and non specific myalgia. Vaeröy H, ed. Pain, Neuropeptides, Symphatetic Responses and Personality Factors in Patients with Fibromyagia (fibrositis syndrome). Dissertation. Oslo, Norway: Oslo University, 1990. 17. Hallberg LR-M, Carlsson SG. Anxiety and coping in patients with chronic work-related muscular pain and patients with fibromyalgia. Eur J Pain 1998;2:309–19. 18. Ekselius L, Bentsson A, von Knorring L. Personality traits as determined by means of the Karolonska Scales of Personality in patients with fibromyalgia. J Musculoscel Pain 1998;6:35–49. 19. Turk DC. Suffering and dysfunction in fibromyalgia syndrome. J Musculoskel Pain 2002;10:85–96. 20. Johnson M. On the Dynamics of Self Esteem. Empirical Validation of Basic Self-esteem and Earning Self-esteem. Dissertation. Stockholm, Sweden: Stockholm University, 1997. 21. Landrø NI, Winnem M. Psychodiagnostic evaluation of patients with myofacial pain syndrome (fibrositis). Pain 1987;30(Suppl 4):S419. 22. Okifuji A, Turk DC. Fibromyalgia: search for mechanisms and effective treatments. In: Gatchel RI, Turk DC, eds. Psychosocial Factors in Pain: Critical Perspectives. New York, Guilford, 1999:227–46. 23. Toskala A, Kangasniemi K, Vasarinen A, Nurmikko T. Pain and the symbolic function. Psychiatr Fenneca 1993;22:101–2. 24. Perry F, Heller PH, Levine JD. Differing correlation’s between pain measures in syndromes with or without explicable organic pathology. Pain 1988;34:185–9. 25. Harju E-L. Quantitative and Qualitative Analysis of Touch, Cold and Warmth in Health, Neuropathic Pain and Fibromyalgia. Dissertation. Stockholm, Sweden: Stockholm University, 2001. 26. Sletvold H, Stiles TC, Landrö N. Information processing in primary fibromyalgia, major depression and healthy controls. J Rheumatol 1995;22:137–42. 27. Grace GM, Nielson WR, Hopkins M, Berg MA. Concentration and memory deficits in patients with fibromyalgia syndrome. J Clin Exp Neuropsychol 1999;21:477–87. 28. Wentz KAH, Lindberg C, Hallberg LR-M. Psychological functioning in women with fibromyalgia. A grounded theory study. Health Care Women Int 2004;25:702–29. 29. Stern PN. Grounded theory: methology: its uses and processes. Image 1980;12:20–3. 30. Glaser BG, Strauss A. The Discovery of Grounded Theory. Chicago, IL: Aldine, 1967.

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31. Strauss A, Corbin J. Basics of Qualitative Research. Grounded Theory Procedures and Techniques. Thousand Oaks, CA: Sage, 1990. 32. Charmaz K. Grounded theory. In: Smith J, Harré R, Van Langenhove L, eds. Rethinking Methods in Psychology. London: Sage, 1995;27–49. 33. Glaser B. Grounded theory and gender relevance. Health Care Women Int 2002;23:786–93. 34. Lincoln YS, Guba EG. Naturalistic Inquiry. Thousand Oaks, CA: Sage, 1985. 35. Page TF. Linkages Between Children’s Narrative Representations of Families and Social Competence in Child-care-settings. Dissertation. Madison: University of Wisconsin-Madison, 1998. 36. Page TF. Attachment themes in the family narratives of pre-school children: a qualitative analysis. Child Adolesc Social Work J 2001;18:353–5. 37. Taylor SE, Klein LC, Lewis BP, Gruenwald TL, Gurung RA, Updegraff JA. Bio-behavioural responses to stress in females: tend-and befriend not fight-and-flight. Psychol Rev 2000;107:411–29. 38. Simms RW, Zerbini CA, Ferrante N, Anthony J, Felson DT, Craven DE. Fibromyalgia syndrome in patients infected with human immunodeficiency virus. Boston City Hospital Clin AIDS Team. Am J Med 1992;92:368–74. 39. Malterud K. Qualitative research: standards, challenge, and guidelines. Lancet 2001;358:483–8. 40. Brewin CR, Andrews B, Gotlieb IH. Psychopathology and early experiences. A reappraisal of retrospective reports. Psychol Bull 1993;113:82–93. 41. Widom CS, Morris S. Accuracy of adult recollections of childhood victimization: part 22. Childhood sexual abuse. Psychol Assoc 1997;9:34–46. 42. Widom CS, Shepard RL. Accuracy of adult recollections of childhood victimization: part 2. Childhood physical abuse. Psychol Assess 1997;8:412–21. 43. Pöyhiä R, Da Costa D, Fitzcharles MA. Previous pain experience in women with fibromyalgia and inflammatory arthritis and nonpainful controls. J Rheumatol 2001;28:1888–91. 44. Walker EA, Keegan D, Gardner G, Sullivan M, Bernstein D, Katon WJ. Psychosocial factors in fibromyalgia compared with rheumatoid arthritis: II. Sexual, physical, and emotional abuse and neglect. Psychosom Med 1997;59:572–7. 45. Schacter DL. The seven sins of memory. Insights from psychology and cognitive neuroscience. Am Psychol 1999;54:182–203.

2 Dissociative and self-loading patterns in adult life The aim of this chapter is to describe psychological functioning in women that developed fibromyalgia based on a psychometric instrument. A further aim was to test if women with fibromyalgia and a group of women without long-lasting pain differed on the I Myself Scale (IMS), an instrument that was based on qualitative data. The IMS was constructed to reflect impaired self-protection against high levels of mental and physical load prior to the onset of fibromyalgia. The groups were compared using analysis of variance, principal components analysis paired with discriminant analysis, and profile analysis. In comparison to women without pain, women with fibromyalgia showed a contrasting response pattern regarding self-regulation. Data patterns regarding psychological status prior to onset of symptoms exhibited impaired selfreference/understanding of health needs. Others were not asked for help and advice. Strategies of dissociation or repression as intense activity were used to avoid mental pain. Ignoring of self, low self-acceptance, and aggression towards the self-marked current self-regulation. Based on the result, implications for development and maintenance of generalized pain are discussed, also areas of use of the IMS are suggested.

2.1 Introduction Fibromyalgia is a syndrome of widespread pain experienced as muscular pain (1–3). Biomedical research has so far failed to prove any significant morphological changes of muscle tissue in fibromyalgia. Instead, increased muscle tone, evidenced by the inability of patients with fibromyalgia to relax between muscular contractions has been reported, while maximal muscle strength and endurance did not differ between patients and controls (3). Bäckman et al. (4) also found a lower muscle relaxation rate in patients with fibromyalgia and that the rate of relaxation increased in the patients during sympathetic blockade. Van Denderen et  al (5) reported on a decreased response of the sympathetic nervous system to exercise in patients with fibromyalgia when compared to healthy controls. Martinez-Lavin (6) suggested that a sympathetic nervous system dysfunction is frequent in patients with fibromyalgia and that the dysfunction is characterized by both hyperactivity and hypo-reactivity to stress. The condition was termed “dysautonomia” and put forward as an argument for fibromyalgia pain being “sympathetically maintained” pain (6). Regarding the mechanisms of pain, epidural administration of lignocaine has been shown to alleviate muscle pain and for the tender points to completely disappear. The researchers that made this recording evaluated fibromyalgia pain in terms of being of peripheral or spinal origin (7). As fibromyalgia is a medically unexplained condition, attention has been paid to the role of psychological factors regarding etiology and maintenance of the syndrome.

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 2 Dissociative and self-loading patterns in adult life

When investigating psychological profiles in relation to fibromyalgia, Hallberg and Carlsson (8) identified higher levels of trait anxiety in patients with fibromyalgia than in another group of patients with long-lasting pain. Brosschot and Aarse (9) described incoherent psychological functioning in patients with fibromyalgia and related that a majority in a group of patients with fibromyalgia scored highly on a scale measuring trait anxiety. Simultaneously and paradoxically all participants scored high on a measure of “repressor-coping style”, that is, a perceptual defense style characterized by verbal reports on very low levels of negative affect or very low scores on inventories measuring anxiety. In stressful situations, in spite of self-reporting on low levels of negative affect, repressor-coping style is paired with comparatively high levels of physiological arousal. Repressor coping is further defined as an inflexible use of perceptual or avoidant defense-measures (repression, denial, dissociation) accompanied by a vague self-representation (10). The specific dissociative response-pattern found by Brosschot and Aarse (9) was discussed in terms of a very rare profile of both a high level of defensiveness and simultaneously a high-level of anxiousness. This specific pattern appears as a breakdown of adaptive measures of defense with similarities to post traumatic stress disorder (PTSD). Employment of fragile, but substantial perceptual defense measures (suppression and dissociation) as in PTSD (11), has also been documented in relation to fibromyalgia (12, 13). In investigated groups of patients with fibromyalgia, rates of more than 55% exhibited symptoms of PTSD. Parallel to this, Amir (14) found that 21% of a sample of patients with PTSD fulfilled the diagnostic criteria for fibromyalgia. In approximately one third of patients with fibromyalgia, pain is infrequent, meaning there is an experience of pain-free pauses (15). Mellegård et al. reported a connection between frequency of fibromyalgia pain and self-care (16). These researchers compared patients with fibromyalgia to patients with neck-, shoulder- and back-pain. Unlike the contrast groups of patients with pain, patients with fibromyalgia were shown to be able to achieve less frequent pain through so-called pain behaviors (relaxation, painkillers, walks, hot baths or showers, or electric pads). Scamell reported full remission of fibromyalgia symptoms in a context of psychological functioning being “transformed” into more “authentic” self-regulation (17). Research so far has mainly been carried out in the psychological dimension of fibromyalgia through quantitative measures employing general-purpose instruments. Simultaneously, inventories, aiming at psychosocial factors playing a part in development of somatic diseases, have been criticized in terms of insufficient theoretical foundations (18). In the qualitative field, theory-generating attempts in the domain of psychosocial processes involved in developing or maintaining fibromyalgia are so far scarce in numbers. The analysis of psychological functioning and psychological processes in line with clinical psychological methodology, such as structural interviews, has so far just begun. Wentz et  al. (19) interviewed women suffering from fibromyalgia and patterns of psychological functioning were inductively identified. These patterns included an impaired signaling functioning from the affect life and from bodily signals such as pain. They further included a defense style of keeping difficult notions out of sight, suppression

2.2 Our study 

 35

of thinking, high level of activity, impaired autonomy in adult life, difficulties in the area of improving conditions of life, undefined self including difficulties in identifying own needs, a pronounced self-reference of motoric competence, omnipotence, or emphasis of own strength, etc. There is currently a lack of quantitative attempts based on analysis of interview data. The phase of creation, selection, and use of inventories based on theoretical formulations emanating from the informants own words is yet to be entered. In this study, an attempt was made to accomplish this. Our investigation was designed to describe psychological functioning in women with fibromyalgia based on a psychometrical instrument. Thus, the aim of the study was to test the hypothesis that the “I myself-scale” (IMS) would differ in scores between a group of women diagnosed with fibromyalgia and a group of age- and education-matched women not suffering from long-lasting pain.

2.2 Our study The recruitment of the participants was made through an advert in a morning paper that asked for women suffering from fibromyalgia and wanted to contribute to a better understanding of the psychological aspects of long-lasting pain. Women that contacted the research group by telephone were sent a letter informing them about the study that also contained a form for written consent. After having received approximately 200 calls from women interested, subsequent women calling were informed that we had a sufficient number of participants to the study. If interested in participating, the women returned the form of written consent to the research group. As comparison group of 30 women that did not suffer from long-lasting pain were recruited. The control group was recruited through a query at workplaces or social settings knowledgeable to the research group. Thirty-five “pain free” women were recruited (see Table 2.1). The participants in the fibromyalgia group were aged 29–64 years (mean 51, SD 7.5 years). The mean age of the women in the control group was 51 years (SD 4.44) (see Table 2.1). Independent t-tests indicated that the groups did not differ

Table 2.1: Classification of year of birth of participants

1 (1937–1942) 2 (1943–1948) 3 (1949–1953) 4 (1954–1959) 5 (1960–1965) 6 (1966–1971) 7 (1972+) Median class

Women diagnosed with fibromyalgia

Women without long lasting pain

6 8 10 6 4 1 1 3

1 10 10 3 4 – 2 3

36 

 2 Dissociative and self-loading patterns in adult life

Table 2.2: Classification of levels of education of participants

1 (Elementary school/ compulsory school) 2 (Grammar school) 3 (High school) 4 (University) Median class

Number of women diagnosed with fibromyalgia

Number of women without long lasting pain

4

3

6 18 6 3

2 16 8 3

significantly according to age and level of education (see Table 2.2). The duration of pain in the fibromyalgia group ranged from 1–50 years (mean 15.4, SD 12.1 years). From an ethical perspective could be noted that the study affected participants with fibromyalgia and participants without long-lasting pain. Some of the items of the inventories were potentially upsetting, however, the participants were informed about the content of the questionnaires in advance by letter. They were also offered the possibility of turning to the first author for counseling or assistance. Presumptive participants were summoned by telephone during the daytime to undergo a medical examination at the Neuromuscular Centre of Sahlgrenska University Hospital, Mölndal. The medical examination was performed by a medical doctor specialized in neurology and rehabilitation medicine in order to confirm the ACR criteria for the diagnosis of fibromyalgia. After a confirmed diagnosis the participant filled out the SF-36 (to be presented elsewhere), the IMS, and the Structural Analysis of Social Behavior (SASB) (to be presented elsewhere). In order to collect a minimum of 30 complete forms, the sample of women diagnosed with fibromyalgia had to consist of 36 participants. Two women who received a diagnosis during medical examination did not participate in the psychological assessment because of reported somatic or psychological problems. For the convenience of the participants, most healthy controls were sent the surveys by post and were asked to return the completed forms. In the case of three participants, the author visited their workplace and collected the inventories at the same occasion. The IMS was developed based on an analysis of interviews with women currently suffering from fibromyalgia (19). The analysis of the interviews resulted in identification of specific psychological patterns of functioning and forming of the concept of the “unprotected self ”. Included into this specific psychological vulnerability was the use of compensating strategies. Unprotected psychological functioning was present before the onset of symptoms and continued during the state of fibromyalgia (19). The scale was formed and dimensions or qualities belonging to the construct “unprotected self ” and the belonging “compensating strategies” were selected based on operation ability and transferred into a scale containing 89 items (Table 2.4). The scale was drafted to mirror the dimensions of impaired signaling functioning from affects and bodily signals (9 items); psychologically invaded (3 items); impaired

2.2 Our study 

 37

autonomy (5 items); impaired self-definition (8 items); difficulties creating good conditions (10 items); self-destructiveness (8 items); motoric self-representation (4 items); strength/being in control (omnipotence) (10 items); compensating high level of activity (11 items); keeping out of sight/defense based on perception (4 items); repairing/helping others at a hypomanic level (5 items); self-suppression (9 items); and suppressed thinking (3 items). The scale was formed to mirror psychological functioning present before, not resulting from, the onset of generalized pain. An example of an item reflecting impaired autonomy, a dimension of “unprotected self ”, could be “I had severe difficulties saying no”. Further, the dimension that impaired self-definition was reflected by “I had difficulties understanding why I had felt tired”. The dimensions belonging to compensating strategies as having a motoric self-representation could be exemplified by “I was always very physically active”. The item “I easily caught sight of things needing to be done” belonged to the dimension of redirection of perception and “I liked to have one thousand irons in the fire” belonged to a dimension of dissociation reinforced by compensating high level of activity. As a part of making the scale as valid as possible the IMS was presented to three women currently suffering from fibromyalgia. These women were asked to comment upon the relevance and comprehensibility of the items. The scale was adjusted accordingly. The participants diagnosed with fibromyalgia were instructed to think back through their adult life before they were stricken with long-lasting pain. The painfree control group was asked to rate their adult life 10–15 years earlier. If they were younger than 35 years old, they were asked to think about their life at the age of about 25 years. Each item was answered through a 5-point scale ranging from “Does not agree at all” to “Totally agree”. Data analyses followed a five-step process. First, a test of the internal consistency by means of Chronbach’s alpha of the IMS was conducted, followed by one-way analyses of variance (ANOVA) in order to examine whether the fibromyalgia group and the comparison group differed on single items of the IMS. In the third step, a partial least square discriminant analysis (PLS-DA) (20) was performed using the 89 items of the IMS as predictors of group membership. The purpose of this analysis was to discover latent variable structures (principal components) and to determine the degree of contribution of individual x-variables in explaining group membership. Group membership was represented by the creation of two dummy variables (Y). The principal components were calculated based on a covariance matrix and then used the method of least squares to reduce variables into components. Further along the process, the x-variables were weighted or attached with loadings in order to achieve a maximization of correlation between the original x-scores of the individuals and their observed belonging to a group (dummy variable Y). A variable importance score (VIP) of the all x-variables was also computed in order to compare all the x-variables according to relevance in explaining Y or group membership. The variables with weights and VIP-values meaning high relevance for defining each group were listed group wise.

38 

 2 Dissociative and self-loading patterns in adult life

In a further step of analysis, the score profiles of the two groups were examined. Consequently, 42 of the 89 items of the IMS were rescaled or inverted (Table 2.4), to allow the higher the reported score of each of the 89 items, the higher the reported potential or endured mental or physical load. All the items of the IMS, including the items rescaled “in direction of potential strain”, were then transformed into one measurement or summing up-factor/level of profile indicating the level of mental load of each individual (expressed as a mean per item = total score/89). The level of a profile is defined by Nunally and Bernstein (21) as a person’s mean score over the variables in the profile. According to these authors, a possible measure of differences of score profiles is the sum of differences in scores. This measure makes sense descriptively but does not admit mathematical analysis due to difficulties tied to the use of absolute differences. In this study, these descriptive measures, mirroring the level of the individual profiles, summed up for each group respectively, are calculated and presented. The level is defined as the mean scores of the variables in the profile of the individual (21). In relation to the value tied to each participant, descriptive statistics were calculated for each group.

2.3 Our findings On the 89 items of the IMS, a Chronbach’s alpha value was calculated and reached a level of 0.907, indicating the high homogeneity of the scale. Seemingly different items could be ascribed to a common underlying construct interpreted as “unprotected self ”. Based on item wise calculation of contribution to internal consistency, 15 items were removed from the scale resulting in an alpha value of the 74 remaining items of 0.934. The internal consistency of the removed items was calculated and reached for 14 of these an alpha value of 0.779. Evaluation of these items (face validity) resulted in the label of “expressed self ”. “Expressed self ” consisted of items such as “I asked others for advice to improve my own life”, “When I was tired I allowed myself to rest” or “I could cry and mourn when I was sad”. The items contributing to “expressed self ” were characterized by an active or “well aware” stance regarding emotion (anger or sadness), bodily needs, need for other people, self-care, boundaries and assertiveness. The correlation between the “unprotected self ” subscale and the “expressed self ” subscale was statistically significant, r  = −0.76, p  <  0.001. One-way ANOVAs were performed to find out if the groups differed on these two subscales. The differences were both statistically significant, for the “unprotected self ” subscale: F (1, 64) = 63.891, p   75 uV,   55%) have been identified by, for example, Cohen et al. in connection with fibromyalgia (26). Wentz et al. (4) and Wentz et al. (15) have also reported on habitual dissociation prior to the onset of generalized pain. Further, a process of association in the form of the onset of self-care and recovery from fibromyalgia is shown in chapter 6. Based on the present results the phenomenon of dissociation and the need for association stand out as necessary issues in the management of fibromyalgia. It seems as though “not accepting” the disease may play a significant role in determining the severity or even the continuation of the disease. Interestingly, Spiegel et al. discussed

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 7 Dissociation interferes with gaps in pain

the paradoxical effect of efforts at suppressing unwanted mental content (25). These efforts might create a rebound process that results in an ongoing process of suppression and relapse. From considerations such as these may be suggested that chronic defensive efforts (meaning chronic stress) exerts an explanatory power regarding both the development and maintenance of fibromyalgia. Schore described dissociative measures in terms of a habitual or automatic dissociative response even to innocuous stressors (27). The possibility of a more habitual dissociative stance could mean an opening regarding treatment of fibromyalgia; the frequency of automatic dissociative measures could be substantially reduced at a moderate expense (moderate distress). If there was a decrease in habitual dissociation, the process of crisis could be facilitated, including a self-image reunification with a body that needs care, alleviation of symptoms and breaks from pain. In an equation such as this, potentially relevant environmental stressors are not included. Dissociative functioning has been related to a deteriorated balance between the sympathetic and the parasympathetic branches of the autonomic nervous system (ANS) (27). At face value, the scenario and data pattern of gaps in pain and relapse could be interpreted as being related to the individual’s altered stress physiology. These alterations then include a fragile but seriously relaxed state that is equivalent to the absence of pain. In cases of paced exercise, an “exercise-wise” balanced state of the ANS could also be equivalent to the absence from pain. (Immobility is sometimes reported as a source of increased pain.) States of unbalance or challenge (via physical or mental load) of the ANS then correspond to pain. Schore also provides a clue as to why dissociation is more common among females; the female nervous system is more mature at an early age providing a tool handling mental load (27). The predominance of females among fibromyalgia patients could be considered from this angle.

7.16 Transformation as rehabilitation “I thought … that now I will start from zero regarding my whole life … I just simply have to rethink about everything and plan. And it made it so that it did not hurt that much … and I lived my day calmly … and it didn’t get that bad [as before] and I still do that today.”

Crisis intervention in connection to the onset of fibromyalgia symptoms clearly seems to be a key measure in rehabilitation and automatic forms of dissociation coped with in the short term. Realistic and “non-dissociated” recognition of the disease could mean valuable personal growth, as in the subgroup in those that accepted the disease. Negative affect tolerance could be improved in the long term, including mourning processes and working through traumatic experiences. Exhausting avoidance measures in mood regulation could be abolished. Chapter 8 shows recovery from fibromyalgia in eight women. The recovery, as opposed to the preceding gaps, took place in a situation of a decrease in mental load, and subsequent ways of life also facilitated pain prevention. In the present result, a subgroup of the informants organized time

7.17 Limitations 

 117

off from pain but their gaps were still interrupted by hassles, unlike in the recovery group (15). Whether this robustness is due to gap length, better life conditions, or better positive affect resources in the recovery group, we can only speculate on.

7.17 Limitations Twenty-four women meeting the diagnostic criteria of fibromyalgia and also experiencing gaps in pain participated in-depth interviews. The limitations of this study include sampling decisions and transferability of results. The sample was not strategically selected from the point of view sociability “being active in a patient’s organization” or not. The sample was heterogeneous with regard to age, civil status, education, and professional background (see Table 7.1), but homogeneous as the informants were or had been well established on the labor market and had experienced reasonably stable family conditions during adulthood. These sample characteristics needs to be considered when transferring the results. Women who are considerably less sociable or live under strikingly difficult social conditions are not mirrored in the present study. From this sample, it cannot be ruled out that more stable conditions even are the key factor in the creation of gaps in pain. The women were interviewed by the author, who had previously met with many women with fibromyalgia through clinical work and for research purposes interviewed women suffering from fibromyalgia or having recovered from diagnosed fibromyalgia (4, 15). Her preconceptions in relation to the development of fibromyalgia were the notions that strained childhood conditions and life-long difficulties regarding selfcare are involved in processes leading to fibromyalgia. A “sensitizing concept” used as a starting point (19) was also that women who experience gaps from pain and women who do not may belong to distinctly different groups. The author further asked the interview question in an open, “neutral” fashion, to minimize bias from suggestion.

7.18 Acknowledgement A special thank you to Stefan Bergman, MD, PhD, for his knowledgeable and committed contribution that made this study possible.

References 1. Wolfe F, Ross K, Anderson J, Russel IJ, Herbert L. The prevalence and characteristics of fibromyalgia in the general population. Arthritis Rheum 1995;38:19–28. 2. Henriksson KG. Is fibromyalgia a central pain state? J Musculoskel Pain 2002;10:45–57. 3. Cöster L, Kendall S, Gerdle B, Henriksson C, Henriksson KG, Bengtsson A. Chronic widespread musculoskeletal pain - a comparison of those who meet criteria for fibromyalgia and those who do not. Eur J Pain 2008;12:600–10.

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4. Wentz KAH, Lindberg C, Hallberg LR-M. Psychological functioning in women with fibromyalgia. A grounded theory study. Health Care Women Int 2004;25:702–29. 5. Moldofsky H, Scarsbrick P, England R, Smythe H. Musculoskeletal symptoms and non-REM sleep disturbance in patients with ‘fibrositis syndrome’ and healthy controls. Psychosom Med 1975;37:341–51. 6. Grace GM, Nielson WR, Hopkins M, Berg MA. Concentration and memory deficits in patients with fibromyalgia syndrome. J Clin Exp Neuropsychol 1999;21:477–87. 7. Staud R, Rodriguez ME. Mechanisms of disease: pain in fibromyalgia syndrome. Nat Clin Pract Rheumatol 2006;2:90–8. 8. Gracely RH, Petzke F, Wolf JM, Clauw DJ. Functional magnetic resonance imagining evidence of augmented pain processing in fibromyalgia. Arthritis Reum 2002;46:1333–43. 9. Jensen KB, Petzke F, Carville S, Marcus H, Williamn SCR, Choy E, et al. Anxiety and depressive symptoms in fibromyalgia are related to low self-esteem but not to cerebral processing of pain. Arthritis Rheum 2010;62:3488–95. 10. Martinez-Lavin M. The autonomic nervous system and fibromyalgia. J Musculoskel Pain 2002;10:221–8. 11. White KP, Nielson WR, Harth M, Ostbye T, Speechley M. Does the label “Fibromyalgia” alter health status, function and health service utilization? A prospective within-group comparison in a community cohort of adults with chronic widespread pain. Arthritis Rheum 2002;4:260–5. 12. Scott B. Coping. Fibromyalgi. Svensk Rehabilitering 1999;2:10–11. [In Swedish] 13. Bennett RM, Burckhardt CS, Clark SR, O’Reilly CA, Wiens AN, Cambell SM. Group treatment in fibromyalgia: A 6 month outpatient program. J Rheumatol 1996;23:521–8. 14. Mellegård M, Grossi G, Soares JJF. A comparative study of coping among women with fibromyalgia, neck/shoulder and back pain. Int J Behav Med 2001;8:103–15. 15. Wentz KAH, Lindberg C, Hallberg LR-M. On parole – the natural history of recovery from fibromyalgia in women: a grounded theory study. J Pain Manag 2012;5:177–94. 16. Wolfe F, Smythe HA, Yunus MB, Bennet RM, Bombardier C, Goldenberg DL. The American College of Rheumatology 1990 criteria for the classification if fibromyalgia. Arthritis Rheum 1990;33:160–72. 17. Wentz KAH. Women with fibromyalgia: Distress avoidance interferes with gaps in pain. J Pain Manag 2012;5:245–60. 18. Glaser BG, Strauss A. The discovery of grounded theory. Chicago, IL: Aldine, 1967. 19. Charmaz K. Grounded theory. In: Smith J, Harré R, Van Langenhove L, eds. Rethinking Methods in Psychology. London: Sage, 1995;27–49. 20. Pronin E, Wegner DM. Manic thinking: independent effects of thought speed and thought content on mood. Psychol Sci 2006;18:807–13. 21. Glass JM, Lyden AK, Petzke F, Stein P, Whalen G, Ambrose K, et al. The effect of brief exercise cessation on pain, fatigue, and mood symptom development in healthy, fit individuals. J Psychosom Res 2004;57:391–8. 22. Davis MC, Zautra AJ, Reich JW. Vulnerability to stress among women in chronic pain from fibromyalgia and osteoarthritis. Ann Behav Med 2003;23:215–26. 23. Glynn LM, Christenfeld N, Gerin W. The role of rumination on recovery from reactivity: Cardiovascular consequences of emotional states. Psychosom Med 2003;64:714–2 24. Charmaz K. The body, identity, and self: adapting to impairment. Sociol Q 1995;36:657–80. 25. Spiegel D, Cardena E. Disintegrated experience: the dissociative disorders revisited. J Abnorm Psychol 1991;100:366–78. 26. Cohen H, Neumann L, Haiman Y, Matar MA, Press J, Buskila D. Prevalence of post-traumatic stress disorder in fibromyalgia patients: Overlapping syndromes or posttraumatic fibromyalgia syndrome. Semin Arthritis Rheum 2002;32:38–50. 27. Schore A. Affect Dysregulation and Disorders of the Self. New York, NY: WW Norton, 2003.

Section III: Recovery from fibromyalgia

8 Women’s narrations on the process of recovery from fibromyalgia A full remission of fibromyalgia symptoms is unusual and the course of recovery is unknown. The aim of this study was to elucidate psychosocial processes expressed by women originally diagnosed with fibromyalgia and presently recovered. Eight women in recovery were interviewed in-depth. Inductive analysis showed that the women as children were both strained and benefited, and that adult psychological functioning was marked by dissociation. Obvious psychological strengths were used to cover up vulnerable parts of the psyche. An increase in mental load was accompanied by development of fibromyalgia. The stage of fibromyalgia meant a maintained high level of load, social support, and mastering strategies as seeking alternative treatment. The stage of recovery was preceded by a pronounced decrease in mental load as improved life conditions or cessation of overexertion of body and mind. The stage of a recovery on parole was mirrored by the core concept “on parole – strengthened enough to be weak”. Remission of symptoms was secured by personal growth and less dissociative functioning, including management of health needs and pacing of activity. A recovery on parole appeared to rely on improved self-regulation allowed by conditions of life.

8.1 Introduction The etiology of fibromyalgia is insufficiently known, and the diagnosis is based on criteria (1). The prevalence has been estimated to be 2% of the population and has obvious dominance in females (2). The course of the disorder is often regarded as chronic with few transitory remissions (3), however, Ledingham et al. reported full remission of symptoms in 3% of patients in a 4 year follow-up study (4). Whereas Bengtsson et al. recorded full remission of symptoms in 2% of patients 8 years after diagnosis (5). Buskila et  al. found a more favorable outcome in school children where 73% of diagnosed children were no longer fibromyalgic at the follow-up after 30 months (6). In the biomedical dimension, Griep et  al. documented neuroendocrine dysregulation, for example, relative hypocortisolemia (7). This noteworthy finding by the researchers, contrasted to the almost inverse neuroendocrine hypothalamicpituitary-adrenal response pattern with the hypercortisolemic responses observed in patients with depression (7). Another report on dysregulation was a decreased response to exercise of the sympathetic nervous system in patients with fibromyalgia when compared to healthy controls (8). As fibromyalgia is not sufficiently medically explained, it is sometimes regarded as a “common distress disorder” together with chronic fatigue syndrome and irritable bowel syndrome (9). The importance of

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 8 Women’s narrations on the process of recovery from fibromyalgia

psychological factors in the course of fibromyalgia is put forward by, for example, Blumenstiel et al. (10). In psychosocial research, one line of investigation has been of traumatic experiences, or levels of lifetime stress. Amir et al. found that 21% of a sample of patients with post-traumatic stress disorder (PTSD) fulfilled the criteria for fibromyalgia (11). Van Houdenhove et al. used other patients with pain as controls and reported that patients with fibromyalgia show a significantly higher prevalence of emotional neglect, emotional and physical abuse, and that a considerable subgroup of these patients also had experienced lifelong victimization (12). In accordance with other research on traumatization in women (13), the perpetrators were most often found in their families (12). Fibromyalgia has further been associated with the experience of high levels of daily stress when compared to other patients with pain (14). Quantitative method in psychosocial research has also been used to predict good or bad outcome of rehabilitation measures or programs. In a study designed to compare group treatments of a relaxation technique with a group treatment combining relaxation techniques with group therapy, the group receiving both kinds of treatment were found to have the best outcome results. The most successful patients had all participated in the group receiving group therapy. They were also singled out by shorter duration of pain, not having applied for disability pension, and showing better interpersonal skills as measured by projective testing (15). To date, theory generating qualitative research in the domain of psychological and social processes involved in symptoms remission/recovery is scarce. Wentz et al. used grounded theory to examine psychosocial processes involved in development and maintenance of fibromyalgia in women (16). In their study, adult psychological functioning was described in terms of lack of self-reference and self-protective ability. Unpaced activity or pronounced helpfulness was often used as compensating selfregulation. Onset of fibromyalgia was preceded by a marked increase in mental load. The phase of maintenance of fibromyalgia was characterized by still holding the qualities of an increased level of mental load. This state of a heightened level of mental load included continued unpaced activity, crisis, cognitive difficulties, and somatic symptoms. Furthermore, a subgroup of women having experienced total remission of symptoms lasting for many years was identified. These women depicted their longlasting pain gaps in a context of improved conditions of life and more successful selfregulation. The aim of our grounded theory study (17) was to employ clinical psychological procedures, to elucidate psychological functioning and psychosocial processes in women originally diagnosed with fibromyalgia and presently recovered. In order to do this, women having recovered from the syndrome were interviewed and invited to express their own views and experiences. Qualities found in the interviews were labeled and categorized in order to illuminate the area under study, which was the course of fibromyalgia and the psychological resources, vulnerabilities, and psychosocial conditions of the recovered women.

8.2 Our sample 

 123

8.2 Our sample The sample consisted of eight women aged 39–68 years (mean 56 years), with a documented diagnosis of fibromyalgia according to the American College of Rheumatology (ACR) criteria (1). The women were selected by the documented diagnosis and subjective and objective recovery. The selection was not able to achieve a heterogeneous sample of participants due to obvious difficulties in finding participants fulfilling the above criteria. The women’s educational backgrounds were long, ranging from 8–16 years of schooling (mean 13.7 years). Five women were married, two were divorced, and one was widowed (see Table 8.1). The participants contacted the research group after an advertisement in a morning paper, asking for women that had recovered from fibromyalgia. They were then sent an informative letter about the study. After informed consent, the medical record was ordered and checked and the participants underwent medical examination. The women were interviewed at the Pain Clinic at Sahlgrenska University Hospital, Mölndal, Sweden. The interviews lasted 1.5–2 hours and focused on the onset of symptoms, course of the illness, remission of symptoms, lifestyle, activity style, life history, object relations, and views regarding reasons behind the development and remission of fibromyalgia

Table 8.1: Background data on eight informants Age Number Family Married/cohabiting Divorced Widowed Number of children living at home Total number of children Education Upper secondary education University Employment/student Full-time Part-time Current level of working/studying Full-time Part-time None Number of years with F-pain recovered Treated for psychiatric/psychological symptoms

35–45

46–55

56–65

66+

2

1

3

2

1 1

1

2 1

1

2 4

1 3

1 6

4

2

1

1 1

2

1 1

1

1

2

1

1

9 and 14 1 and 7 1

4 2

2 6, 10, 17 4, 7, 10 2

1

2 15 and 24 2 and 6

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 8 Women’s narrations on the process of recovery from fibromyalgia

symptoms. The interviews were recorded and transcribed. The transcripts were analyzed inductively in line with guidelines for grounded theory [e.g., (18)] in order to explore a new area of which little is known. In this study, the aim was the formation of a hypothetical model on relationships between emerging concepts in line with Charmaz (19) “grounded theory methods are designed to study processes, these methods enable the psychologist to study the development, maintenance and change of individual and interpersonal processes” (p. 30). Induction is founded by the creation of concepts, later forming a theory or hypotheses. The first step of induction in this study was reading an interview. The next step was line-by-line coding. The codes reflected both “closeness” and “distance” in relation to the narrations. Both in vivo and in vitro codes came to use, meaning conceptualizing the content of the interviews, while using concepts that were unrelated to theoretical frameworks on psychological functioning and combining them with concepts stemming from theoretical frameworks. This was a decision that aimed at capturing as much as possible of qualities in the dimension of experiences, conditions, and psychological functioning present in the interviews. The line-by-line coding was also performed twice. The versions were compared, and a third version of coding was created and used in the creation of preliminary categories. These categories were compared with the interview data. A preliminary model was created from each interview and relied on an axial coding procedure where relationships between categories, other categories, and subcategories were tested in data. The categories and preliminary models stemming from each interview were compared and new more abstract categories were created. This means that categories with similar “meaning” as existential threat, localized pain, and sleep deprivation were clustered into the higher order category increase in mental load; development of fibromyalgia. This higher order category described strain having been added or having escalated at the time of onset of the symptoms. A study group model was created through the next step of identifying a core concept to which the other categories were related. In all stages of the inductive process, the relationships between the codes, the categories, and the core concept was compared to the data, thereby also being grounded in the data. The quality of a naturalistic data pattern theory such as this could be estimated by its ability to explain the phenomenon or the area under study, and its ability to interpret and predict actions connected to it.

8.3 What did we find? The analysis resulted in five higher order categories/concepts that described psychological functioning in women who have recovered from fibromyalgia. These concepts were given the following labels: strong but not enough to be weak; increase in mental load – development of fibromyalgia; challenge of fibromyalgia; decrease in mental

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Table 8.2: Components of the core concept on parole-strengthened enough to be weak and the four higher order categories: strong but not enough to be weak; increase in mental load – development of fibromyalgia; challenge of fibromyalgia; and decrease in mental load – symptom remission Strong but not enough to be weak

Challenge of fibromyalgia

Dimension: Strained and benefited as a child Overwhelming situation/unprotected child Used child Stimulation/powerful role models One parent loving Dimension: Strong but not enough to be weak Alloplastic competence/educated/enjoying professional life Unresolved dependence Capable of receiving help Self-criticizing/scared of criticism/easily invaded/overwhelmed Dissociative functioning/activity/incoherence Redirection of perception

Dimension: Vicious circle of mental load Helpless/hopeless/disaster Stigmatized Cognitive difficulties Dimension: Mastering strategies Seeking information about health Skills/results from alternative treatment Actively seeking a better life Economic resources Dimension: Support counteracting helplessness/ loneliness/despair: Protecting fellow human or spouse A good relationship with a good doctor Decrease in mental load – symptom remission

Increase in mental load – development of fibromyalgia Load from external conditions Localized pain Immobility Invaded/verbal aggression Existential threat Sleep deprivation/exhaustion

Life situation improved Stopping over exertion Platform of diagnosis Psychological conflict resolved Improved management of negative affect On parole – strengthened enough to be weak Health depending on careful management Not being overactive Efficacious defenses Personal growth

load – symptoms remission; and, on parole – strengthened enough to be weak. A core concept of on parole – strengthened enough to be weak was identified. This core concept was central in a process of transformation that appeared in data and related to the other higher order categories. The core concept and the higher order categories will be briefly described. Other categories and codes that pertain to the higher order categories clarify their content and variation in expression.

8.4 Strong but not enough to be weak This concept illuminates insufficient psychological integration of vulnerable, weak, insecure, hurt, unprotected, or overstrained parts of the self with skilful and creative parts. This pattern of incoherent functioning embraces two dimensions; firstly,

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 8 Women’s narrations on the process of recovery from fibromyalgia

developmental conditions, strained and benefited as a child, and secondly, adult functioning, strong but not enough to be weak. The dimension of strained and benefited as a child was shown in a quality of being strained but also benefited as a child, meaning that the child was exposed to the malfunctioning of parenthood simultaneously as she could benefit from love from at least one adult. She might have had an opportunity to identify with a parent experienced as happy, skilful or powerful. Signs of not having been mothered were identified in the narrations, and was paired with the experiences of a loving father as illustrated by the following excerpt: “… when I was little, before I almost could walk, I crept away to the neighbors and my mother says … that I have never liked it at home and I would want to say that have you never thought of why … I moved away from home when I was 14 years old … she was always negative, bitter, cold. Cried easily … I have never sat in the lap of my mother … she has never read a story to me … I loved to be with my father while he was working close to home. We had a very good relationship …”

Strain that was related to incapacity of parenthood appeared in the interviews as verbal or physical abuse. The child might also have been exposed to an overwhelming situation of having a parent in a chronic condition of emotional crisis. In relation to this parent, the child was unprotected regarding expressed emotional pain, anger or demands. Simultaneously, one or both parents might have been professionally successful, well educated, or gifted, supplying meaning, stimulation, and powerful role models: “She was a very depressive woman … she told me at early age … that if abortion had been free you had not existed … she turned to me when she was sad, so it was my mission to get her in a good mood … when I was 13 I was allowed to go to the country house alone … I have managed on my own since … they were very busy with their lives … daddy worked all the time and my mother was very active in politics …”

The women as children might further have had to show premature strength, and thereby dissociated vulnerable aspects of the psyche. Another expression of strained and benefited as a child was that of having been a lonely child, not having benefited from the company of peers exemplified by one informant. She described her own loneliness as a child, simultaneously depicted her mother as light-hearted and autonomous. In the interviews, there were also signs of strain due to a traumatised mother being the caregiver, which also constituted a helpless role model for the child to identify with. In the narrations, a quality of spite/stubbornness and unrealistic tendencies also appeared in a child that sought security in compensatory notions of high levels of self-control. One informant, wilfully failed tests at school that would have created possibilities for her to get a good education: “I didn’t want to do it … don’t know if it was because I was forced to …”

8.4 Strong but not enough to be weak 

 127

The dimension of being strong but not enough to be weak was shown in the quality of an adult psychological functioning where capable parts of the psyche were intensively used to desert, encapsulate or cover the vulnerable, weak, insecure or overstrained parts. This incoherent psychological functioning simultaneously meant that the women gained pleasures and security from their competence, as in alloplastic competence, being educated, and enjoying their professional life. The label alloplastic, in this context, aims at an appearing ability to influence and/or change the surrounding world or otherwise conditions of life. These strengths also embraced, in certain segments of life, an ability to take oneself seriously and to be able to enjoy life. The women wished for and also found satisfaction from a good private or professional life. Their resourcefulness was also manifested in being able to receive help. Parallel to the resourcefulness were signs of a weak self-representation in terms of a lack of sense of separateness and “identity” sufficient enough to safely endure interpersonal conflicts. Moreover, this insufficiently defined self-representation played a role in setting standards, contemplating and understanding health needs. An example of this is one informant that for the first time became aware of bodily signals and limitations after having acquired marked bodily pathology due to working on an extreme extent. Furthermore, this weak self-representation was being paired with patterns of self-criticism and of being scared of criticism, easily invaded, or easily overwhelmed. The informants also felt that they deserved criticism and seemed to have difficulties protecting themselves, which resulted in them being invaded or overwhelmed. This pattern also included unsolved dependencies, mainly in relation to a parent: “… I will never get any confirmation that I am good enough … but it is immensely difficult … a psychologist said that I should learn not to take all that my mother throws out at me …”

The interviews also held elements of an inability to mourn or suffer emotionally. A state of being dammed up with negative emotions or having an experience of always living under stress could accompany this inability to mourn or suffer. “The stress” was not a response to “external” threats or demands but rather as a pressure “from the inside”. The inability to mourn or to have faced repeated challenges meant an accumulation of trauma. The women deserted, encapsulated or covered the weak parts of the self, and the narrations held evidence of dissociative functioning. Facts of life and wishes could have been kept “separate”. “Tuning in” to intense activity also served as dissociation. One informant described how she could not give way to just being, thinking, and feeling: “… since I was a child, I have been like voluntary work and in that sense I always sat doing things at home … [also] sewing and gardening … [reading?] Yes, books … [somebody said to me] it can’t be good keeping on like that all the time but I experienced it … not like stressful but it was relaxation to me reading a good book … embroidering, having to concentrate just on that and leaving the other …”

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 8 Women’s narrations on the process of recovery from fibromyalgia

Besides dissociative functioning, this excerpt also shows that the women redirected perception and diverted attention into the outer world away from unmanageable mental content. The interviews further indicated that emotional reactions such as fear or mourning in crisis were counteracted by hypomanic strategies. Moreover, painful affective reactions could be avoided by fantasies of being able to “take it right”. “Take it right” could be also be complemented with industriousness, an interesting life content or exercise. In the narrations, frightening or sad revelations might be handled through denial, isolation, or rigid annulment, meaning that mounting health problems or lack of sleep were met with decisiveness to not be influenced by these events. The fright in relation to not being healthy was instead met by perseverance regarding exhausting activity as continuing to work full-time in spite of substantial strain from deprivation of sleep and somatic symptoms.

8.5 Increase in mental load – development of fibromyalgia This category describes mental load that was added to, or had escalated, at the time of the onset of fibromyalgia symptoms. Data patterns showed a combination of many stressors that contributed to an increase in mental load that preceded and paralleled the onset of fibromyalgia symptoms. Localized pain might have been introduced or worsened at the time of the onset of symptoms. One informant related to this combination of stressors and related how she had faced a new and intensely psychologically and ergonomically demanding employment. She also had a long time to travel to work due to a breakdown in public transport: “… at the time the pain was mostly … in the neck and shoulders and the headache got worse … and gradually it was very difficult to sleep and so I got pain … it ached. Sometimes I could not keep my legs still … I could not sit still at all … it turned over … to fibromyalgia.”

An ambitious informant developed localized pain in her thirties and fibromyalgia in her forties as a result of a situation of being forced into immobility at work due to static work-tasks. Moreover, she faced longer and exhausting journeys to work: “… this travelling was a bit tough … [?] … a bit tough … but fun also … I found gradually it was hard for the body … I sat very much in the car … if I was in excellent shape it worked out much better but the shape just poured away from me … driving that much … I didn’t have the energy for daily exercise … when I came home … I slept a few hours instead … it somewhat cracked me …”

An increase in mental load was also evident as a crisis in the form of an existential threat as to admit the loss of full health. This, in turn, may trigger further strain by health jeopardizing behavior or a hypo-manic response, such as an enormous effort

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to maintain the same high level of activity as before, emerging symptoms, and sleep deprivation. This, in turn, brought physical and mental exhaustion: [It must not be a disease, I still want to be a [profession] … I was afraid to become a fibromyalgia old woman, you know, someone who can’t do anything, doesn’t want to do anything, not having the strength to do anything … I could not sleep because I had pain … I could be awake once an hour … [for 5 years you worked full-time and got worse and worse?] Yes from the beginning it was only the joints … I was tired but … my life was like trying to make it work …]

Mental load such as being psychologically invaded or difficulties regarding saying no were present in the data. An informant, for example, explained about a situation in which she had worked overtime and developed localized pain. Her situation also included sleep deprivation due to working day and night shifts. In this situation, she developed fibromyalgia: “I got pains in the arm … tendonitis … I should really have slowed down then and not kept working that much … and got even more pain … [?] … There was a shortness of staff and I had difficulty saying no … it was used … it was known that I usually work extra time … I was very much alone, my husband travels a lot … I might as well work …”

The development of symptoms could also coincide with mental load, such as helplessness, hopelessness, or feelings of captivity in a socio-economic life situation that was experienced as inescapable.

8.6 Challenge of fibromyalgia Three separate dimensions of the challenge of fibromyalgia were identified in the data: maintained high level of load, mastering strategies, and support counteracting helplessness and despair. After the increase in mental load, recurrent signs in the narrations indicated a maintained high level of load. A quality of helpless/hopeless/heading for disaster mirrors that the women were terrified by their symptoms and their consequences, a fear getting worse, anxiety, and self-doubt. The sense of self might also have been suppressed in order not to experience helplessness/hopelessness or that one was heading for a disaster. One means of avoidance was to concentrate solely on daily routines but not to be diagnosed by a medical doctor might mean to be frightened: “… I was afraid it was cancer … I liked to hike … my … son … 14 years old said I want to go with you rambling … I had to tell him, what will happen if I die while we are out in the wilds …”

Some of the informants felt stigmatized or ashamed of not being able to give an explanation to friends, employers, or to themselves of their symptoms. Load from the somatic symptoms and from deprivation of sleep was a constant finding in

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the interviews. Cognitive difficulties, regarding remembering, controlling affects, finding the right words, being able to concentrate and to plan created problems while working “… leads also to having to stay over at work” as expressed in one interview. There were further signs in the interviews of “alternative” treatments, such as Eastern medicine alleviating the symptoms, and of these effects being counteracted by unpaced activity. The dimension mastering strategies mirrors the resourcefulness of the informants, such as creativity and problem solving capacity at work during the stage of fibromyalgia. Seeking information about health was a consistent pattern throughout the data. The talent and skills of the informants often meant an interesting life through a stimulating job that partly compensated for the setback of somatic symptoms. Parts of the quality of life could be regarded as not at risk of being lost. This also meant an identity of professional success and of attractiveness on the labor market. The women, according to patterns in data, could be said to have actively created a better life, the women thereby showing a sense of self-worth as deserving a good life, at least partially. In spite of having been confronted with the diagnosis of a presumed chronic disease, one woman narrates: “I decided to leave my husband … I had decided 2 years prior but I didn’t go through with it until the children were older … but a part of the recovery, I believe, is about my taking control over my life and not letting anyone else handle me …”

Parallel to the decision to get a divorce this informant used alternative treatment in the form of Eastern medicine. From this treatment, she regained a great deal of energy. A recurrent quality in the interviews was that the women developed skills or experiences and good results from alternative treatment . The informants might have benefited from this treatment in the form of substantial gaps in pain ascribed to treatments such as massage, acupuncture, and techniques of relaxation to relieve pain. They often had sufficient economic resources to ease their symptoms or experience pain-gaps through training and/or services from private providers. Descriptions of how the women kept up their spirit or continued to work based on this kind of relief were present in the interviews. In addition, these problemsolving patterns were paralleled by the capacity to seek and accept help. One informant with a very modest income accepted help from relatives to be able to live abroad at a very low cost, seeking the benefit of a warmer climate. Data further contained examples of the informants seeking counselling in order to deal with psychosocial stressors. The dominating patterns were that the women received different kinds of support that counteracted their helplessness, loneliness, and despair. An empathic and problem-solving atmosphere in marriage, at work, or in friendships was depicted. The quality of support could also mean that realistic and acceptable life solutions were

8.7 Decrease in mental load – symptom remission 

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offered to the woman. An informant developed an incapacity to handle stress that included hand-motor difficulties. At the stage of gradual remission of symptoms, she was offered employment in which stress-tolerance and hand-motor skills were of less importance, an employment that she enjoyed. Not least, a good relationship with a doctor that showed empathy was also highly valued.

8.7 Decrease in mental load – symptom remission A decrease in mental strain proceeded and paralleled the remission of fibromyalgia symptoms. The women might have tried to improve their lives or manage their symptoms, but those measures did not seem to result in the removal of symptoms. It was rather in a situation of actual decrease in the level of mental load that the symptoms gradually, or instantly, vanished. The degree of mental load seemed to decrease or the life situation was considerably improved, as a result from the women having taken active measures themselves or as “a gift from above”. The narrations contained signs of the significance of the diagnosis of fibromyalgia. The diagnosis might drive away fears of other diseases and constitute prerequisites for control or action. A sense of control or even “magic” control was important to decrease mental load. The magic part of the sense of control could be expressed as a notion of being completely sure of being able to achieve what you decided to achieve. A relief from social pressure or humiliation through retirement could also exemplify the stage of decrease in mental load – symptom remission. Early retirement, offered by a doctor without the woman herself having thought of the possibility, exemplifies “a gift from above” quality present in the data. The cessation of overexertion of the body and mind is exemplified by an unusually ambitious and strained teacher who struggled, for about 15 years, to increase her work hours with one lesson a week every year, in spite of pain and severe cognitive difficulties including sensitivity to noise. Her doctor, a specialist, advised her not to work as a teacher. She acquired relaxing skills to achieve moments of relief from her fibromyalgia symptoms, and used these gains to manage her work and increase her work hours. “… didn’t realize that I ran over my energy, that I worked over my strength … [the doctor said] … I can’t see you going back as a teacher, and he was right but I did it anyway … I realize now that I made it worse … .the healing process would have been faster if I had not at any cost … I should be doughty.”

The informant gradually but rather quickly recovered from fibromyalgia after she received her pension. To decrease mental load might contribute a quality of a psychological conflict being resolved. A new way of handling personally relevant issues meant an end to

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painful psychological tensions. An extreme fear of being put on sick leave or forced into retirement, and therefore, no longer belonging to the world of the healthy and active could be expressed. One woman with pain, cognitive difficulties, and sleep deprivation, regained a healthy sleeping pattern, had a stepwise full remission of symptoms and was able to return to work full-time after having accepted and found something meaningful in her current sick-listing of 50%: “… about being sick-listed … then it felt like I just give in to this … let it take over … I have had a terrible fright of this must not take over like … it must not be a disease. I want to be [a professional] still, it was important … tired, in pain and sad, and at the same time I didn’t want to be at home … when I was sick-listed 50% … I just lay down and stared into the ceiling.”

Two years after starting to take antidepressants to manage the reaction to sick-listing for half the time, she started to find being at home half the time an acceptable alternative to working full time. “… important to accept that one can be at home … at first … it was a stigma … but at last I might enjoy … a schoolchild comes home and says it’s nice that you’re at home …”

In addition, the data showed signs of that women marked by intense tension from unresolved existential threats or unresolved relational hardships in life, could experience symptom remission, either accompanying personal growth or antidepressants. One woman experienced immediate symptom remission from medication. Another expression of decrease in mental load was the family situation getting happier at the time of remission of symptoms. Recovery could also be ascribed to the ending of localized pain and the end of recurring migraines ascribed to the menopause.

8.8 On parole – strengthened enough to be weak The stage of being on parole from symptoms of fibromyalgia, including improved coherent functioning, mirrors the explicit statement from the women that health was conditional, was depended on careful management, and was maintained by ways of living. The symptoms were held off by management or a health-promoting work style. The women named sobriety while exercising, pacing of activity, avoiding heavy lifting, or taking a short rest after work in order to enjoy the evening. The women were not overactive any more. During the stage of parole, health could also be cared for through the women having found a personally relevant low level of strain. One interviewee handled her difficulty to stand interpersonal frustrations through organizing her life very much on her own terms. She emphasized her need for a great deal of time on her own and a stimulating work life marked by high levels of self-control (being able to decide her work hours, etc.). In the stage of parole, the women developed

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or employed efficacious defences, or an increase in defense operations, in the sense that they used coping strategies and chose a lifestyle congruent with their self-image. This phenomenon could be exemplified with a need for industriousness, hypo-manic repair, or dissociation: “… fulltime? I like my job. I think it depends on that. Yes, it means a lot to me.”

Efficacious defenses could also mean a need of “filling up” with meeting people or enjoying cultural events. The interviewees also held qualities of personal growth, which meant that needs were no longer ignored at the original level. Besides the obvious continuous care for physical well-being, was proof of being less rigid and less incoherent self-regulation. The data also contained signs of other processes of “changing one-self ”, exemplified by learning to say no: “Yes, the first time was, I dare say, so that I almost started to cry that I didn’t [do what was asked for] it was hard to say no, but I don’t know, I just started to say no and I said no … and that is how it is …”

8.9 Discussion The aim of this study was to illuminate the course of fibromyalgia and the psychological resources, vulnerabilities, and psychosocial conditions of the recovered women. One tentative interpretation of our results is the identification of transformation or growth regarding psychological functioning that secured parole from fibromyalgia symptoms (see Figure 8.1). This transformation of psychological functioning also benefited by a decrease in mental load that preceded and paralleled the remission of symptoms. This means, concerning an adult, to have the self-structure, strong but not On parole

Strong but not enough to be weak

Increase in mental load development of fibromyalgia

Decrease in mental load remission of symptoms

-strengthened enough to be weak

Figure 8.1: Transformation or growth regarding psychological functioning that secured parole from fibromyalgia. The transformation and the remission of symptoms also benefited by a decrease in mental load

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enough to be weak that is effective in a response to exposure to a sufficient amount of increase in mental load – development of fibromyalgia. The next stage of the process, challenge of fibromyalgia means that a high level of mental load is maintained but also counteracted by the woman’s supportive network. At a later stage, characterized by a decrease in mental load, symptom remission occurs. The subsequent stage of on parole – strengthened enough to be weak represents the present and a change into more coherent psychological functioning. This change allows and includes careful management of corporeal and mental health needs in order to preserve recovery. This interpretation implies a process of disintegrated capable and vulnerable parts of the psyche, including an inflexible defense structure, which responds to variations in mental load. The childhood conditions of the informants meant strain and insufficient support that was combined with possibilities of developing self-efficacy (20). It also resulted in a “separation” of strong parts of the psyche from vulnerable parts. In adult life, management of negative emotion was impaired and self-inflicted exposure to different kinds of strain largely contributed to overexertion of mind and body. In parallel, the informants often enjoyed professional success. The challenge of the disease meant both a vicious circle of strain and helplessness and the use of their competence. The social network often supplied useful aid and recognition. Remission of symptoms was not achieved until a substantial decrease in mental load was evident. The stage of recovery on parole was actively maintained by coherent and flexible understanding of health needs, such as pacing of activity and improved psychological defense measures. In the present result, the women were characterized by marked alloplastic competence or improved self-efficacy (20). Simultaneously, this competence had no immediate relationship to recovery from fibromyalgia. The women did not (in other words) lift themselves by the hair in order to recover. A hypothesized relationship between competence in the area of affecting your conditions of life and recovery might instead be a more direct access to feelings of hope and relief. From a more theoretical perspective on self-regulation (21), the notion of being able to affect the conditions of your life, could work in the opposite direction of somatic outburst, and a decrease in mental load might have promoted more integrated mental functioning.

8.10 Patterns compared Maintenance of fibromyalgia in women was found by Wentz et al. to correspond to high levels of mental load (16). This event logically means that the prerequisites of neutralizing interactions between unprotected psychological functioning (16), mental load, and reduced cognitive functioning are not at hand. One aspect of vulnerability connected to maintenance of fibromyalgia was the deterioration of conditions of life, preceding the onset of fibromyalgia and resulting from fibromyalgia (16). In the present study, signs in data indicate that significant positive change in the

8.11 Transformation as a remedy? 

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conditions of life, talent and skills, a decent life situation, or the ending of over exertion of body and mind annulled deterioration of conditions of life. Personal growth might also have neutralized mental load. Data patterns reported by Wentz et  al. display conditions of life as less advantageous when compared to the present results (16). Bearing in mind that alloplastic competence or self-efficacy (20) are among the obvious difference in personality structure when compared to women maintaining fibromyalgia (16), difficulties in this area could specifically be looked upon as factors contributing to the heightened level of strain during the state of fibromyalgia. This interpretation also finds some support in studies comparing levels of psychological capability and psychological well-being with levels of fibromyalgia symptoms. Walker et al. found that the severity of a psychosocial trauma significantly correlated with measures of physical disability and psychological difficulties in patients with fibromyalgia but not in patients with rheumatoid arthritis (22). Psychosocial strain was hypothesized as being a significant factor in the development, maintenance, and levels of disability in fibromyalgia. Buckelew et al. reported that higher self-efficacy was related to less pain and less physical impairment in fibromyalgia patients (23). Another fascinating data pattern mirroring competence and levels of mental load in the present results was that the journey to recovery was conducted through a stage of experiencing gaps in pain. These gaps were due to acquired skills or resulted from alternative treatment. A parallel to this might be that “pain behaviours”, aimed at easing pain (taking medication, walking, relaxing, taking hot showers or baths, and using electric pads) have been found to be related to less frequent pain in a group of 81 women with pain from fibromyalgia but not in a group experiencing other kinds of pain (24).

8.11 Transformation as a remedy? The present results describe a process of development of psychological functioning, from covering up and abandoning weakness to taking care of weakness. Comparison being a key technique in grounded theory means that the present result needs to be re-contextualized into the area of research on adaptation to chronic disease. Charmaz describes a process of personal growth in relation to chronic disease (25). The process takes off from mild dissociation, trying to ignore the somatic condition. According to Charmaz, chronically ill individuals extend control over their lives instead of dissociating, identifying with and listening to their bodies, and thereby, learning to take better care of corresponding needs (25). The dynamics of “transformation” into acceptance of the altered life situation meant “a new wholeness of self ” and an access to “a voice from within” (25). The conceptualization of the process of “transformation” in relation to fibromyalgia by Scammell was focused solely on successful “transformation” (26). An unexpected finding was that after successful “transformation” most out of the eight participants no longer considered themselves as suffering from fibromyalgia.

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Scammell employed a grounded theory design and depicted qualities of increased coherence as “transformed to a more authentic self ” and “healthier life choices” (26). Other patterns of psychological resourcefulness were a capacity of seeking and accepting help. Scammell further described all the “transformed” participants as having had psychotherapy and had sought help from alternative practitioners, it was also stated that all participants belonged to middle or upper middle class (26). In addition, Scammell described the recovery process as reaching a stage where the participants experienced increased trust in themselves (26). Thus, they gradually recovered.

8.12 Implications for treatment and prevention – – – – – –

Assessment of the subjective situation Decrease in mental load aiming at stabilization of psychological functioning A good relationship with a good doctor Treatment modalities tried out in order to decrease symptoms Increase awareness of the context of experiences of relief in pain or “pain-gaps” Personal growth through support groups or individual therapy

A decrease in mental load that aims at stabilisation of psychological functioning is a measure that needs to be considered in the treatment of fibromyalgia. Hence, the subjective situation of the individual (including the latent level) needs, through clinical psychological exploration, to be thoroughly assessed. Personally relevant stressors of the individual influencing health, including exhausting hyperactivity, need to be accounted for in both prevention and rehabilitation. These kinds of measures parallel the basic prerequisites of recovery outlined in relation to trauma (as child abuse) by Herman (27). The first stage of recovery according to Herman is the establishment of conditions of safety as a sense of power or control (27). In the case of sufferers from fibromyalgia, the establishment of diagnosis and measures regarding sleep deprivation, workload, over activity, or the need for support from family and significant others are of greatest urgency. A good relationship with a good doctor needs to be established, and thereafter, different treatment modalities, such as relaxation or scheduled recuperation need to be offered and tried in order for the individual to experience some control, relief, and hope. Self care and personal growth could be facilitated through a group setting or individual psychotherapy. This need for verbalizing the issues of life might find its parallel in the view of Herman that unmanageable experiences are dealt with through the action of “telling a story” (27). Increased awareness of the context of experiences of relief, in pain, or gaps in pain could be an integrated part in the insight guiding individualized rehabilitation towards a decrease in symptoms. Quoting one of the participants’ answers to an interview question on rehabilitation measures: “… different things work for different people …”

8.13 Methodological considerations 

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8.13 Methodological considerations The sample was small and not strategically selected but held some qualities of heterogeneity according to age, education, and professional background. The sample was reasonably homogeneous according to patterns of being or having been well established on the labor market and having had reasonably stable family conditions during adult age. The sample also must be characterized by qualities of an active stance, the women on their own initiative having contacted the research group. These characteristics of the sample should be taken into account when considering transference of the results. If women marked by a pronounced lesser ability to receive help and less of an alloplastic competence, recovers from fibromyalgia, the present result could not be transferred. Further work is needed to more fully test and develop variation and content of the identified categories. Grounded theory was chosen based on the preparedness on forming a theory or a model from the emerging concepts. The interview guide was inspired by clinical psychological procedures and aimed at mapping, for example, the onset and course of symptoms, activity-style, symptoms management and interpersonal relationships. In the service of abstraction in this study, a procedure of studying codes separated from the interview they belonged to was employed. Categories formed from the scrutiny of codes were then tested against the source (the interview) in the service of “grounding the abstraction”. Data was further anticipated from a constructivist angle, acknowledging the role of sampling decisions and development of the interview guide alongside the emergence of categories and hypothetical theory. Through strategies of construction, hypotheses on patterns and events can be tested alongside data gathering using the strategy of constant comparison. Different possible effects of the researchers’ needs can also to be assessed and shared. It is indisputable that the researcher will affect the research process and to deny this contributes to “subjectivity”. Instead, a positioned researcher should be accounted for in the assessment of subjectivity. The interviewer had prior knowledge of women with fibromyalgia through clinical work and by interviewing several women suffering from fibromyalgia for research purposes (16). The educational and theoretical background of the interviewer could be summarized as developmental psychology based on a psychodynamic framework. A particular interest is of maturational processes in somatically healthy women and health psychology, especially psychophysiology/neuropsychology related to musculoskeletal pain. The grounded theory method contrasts with traditional quantitative research designs and assumes openness and flexibility of approach. The generated hypotheses, or ideas, may later be verified through traditional logico-deductive methods (19).

8.14 Conclusions Briefly, our study concerned a hypothesis including a core concept, on parole – strengthened enough to be weak, and a suggestion that recovery from fibromyalgia is

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conditional, relies on increased coherence in psychological functioning and appears to be allowed and maintained by favorable conditions of life and ways of living.

8.15 Acknowledgements Financial support has been obtained from the Committee for Mental and Physical Disabilities of Västra Götaland Region, Sweden. Britt-Marie Wahlin and Margareta Sjöberg have transcribed the taped interviews.

References 1. Wolfe F, Smythe HA, Yunus MB, Bennet RM, Bombardier C, Godenberg DL. The American College of Rheumatology 1990 criteria for the classification if fibromyalgia. Report of the Multicenter Criteria Committee. Arthritis Rheum 1990;33:160–72. 2. Wolfe F, Ross K, Anderson J, Russel IJ, Herbert L. The prevalence and characteristics of fibromyalgia in the general population. Arthritis Rheum 1995;38:19–28. 3. Felson DT, Goldenberg DL. The natural history of fibromyalgia. Arthritis Rheum 1986;29:1522–6. 4. Ledingham J, Doherty S, Doherty M. Primary fibromyalgia syndrome – an outcome study. Br J Rheumatol 1993;32:139–42. 5. Bengtsson A, Bäckman E, Lindblom B, Skogh T. Long time follow-up of fibromyalgia patients: Clinical symptoms, muscular function, laboratory tests – an eight year comparison study. J Musculoskel Pain 1994;2:67–80. 6. Buskila D, Neumann L, Hersman E, Gedalia A, Press J, Sukenik S. Fibromyalgia in children, an outcome study. J Rheumatol 1995;22:525–8. 7. Griep EN, Boersma, de Kloet ER. Altered reactivity of the hypothalamic-pituitary-adrenal axis in the primary fibromyalgia syndrome. J Rheumatol 1993;20;469–74. 8. Van Denderen JC, Boersma JW, Zeinstra P, Hollander AP, van Neerbos BR. Physiological effects of exhaustive physical exercise in primary fibromyalgia syndrome (PFS): is PFS a disorder of neuroendocrine reactivity? Scand J Rheumatol 1992;21:35–7. 9. Henningsen P, Zimmermann T, Sattel H. Medically unexplained physical symptoms, anxiety, and depression: a meta-analytic review. Psychosom Med 2003;65:528–33. 10. Blumenstiel K, Eich W. Psychosomatic aspects in the diagnosis and treatment of fibromyalgia. Schmerz 2003;17:399–404. [In German]. 11. Amir M, Kaplan Z, Neumann L, Sharabani R, Shani N, Buskila D. Posttraumatic stress disorder, tenderness and fibromyalgia. J Psychosom Res 1997;42:607–13. 12. Van Houdenhove B, Neerinckx E, Lysens R, Vertommen H, Van Houdenhove L, Onghena P, et al. Victimization in chronic fatigue syndrome and fibromyalgia in tertiary care: a controlled study on prevalence and characteristics. Psychosomatics 2001;42:21–8. 13. van der Kolk BA, Roth S, Pelcovitz D, Sunday S, Spinazzola J. Disorders of extreme stress: The empirical foundation of a complex adaptation to trauma. J Trauma Stress 2005;18:389–99. 14. Dailey PA, Bishop DD, Russell IJ, Fletcher EM. Psychological stress and the fibrositis/ fibromyalgia syndrome. J Rheumatol 1990;17:1380–5. 15. Keel PJ, Bodoky C, Gerhard U, Müller W. Comparison of integrated group therapy and group relaxation training for fibromyalgia. Clin J Pain 1998;1:232–8.

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16. Wentz KAH, Lindberg C, Hallberg LR-M. Psychological functioning in women with fibromyalgia. A grounded theory study. Health Care Women Int 2004;25:702–29. 17. Wentz KAH, Lindberg C, Hallberg LR-M. On parole – the natural history of recovery from fibromyalgia in women: a grounded theory study. J Pain Manag 2012;5:177–94. 18. Strauss A, Corbin J. Basics of Qualitative Research. Techniques and Procedures for Developing Grounded Theory. Thousand Oaks, CA: Sage, 1996. 19. Charmaz K. Grounded theory. In: Smith J, Harré R, Van Langenhove L, eds. Rethinking Methods in Psychology. London: Sage, 1995;27–49. 20. Löve J, Moore CD, Hensing G. Validation of the Swedish translation of the general self-efficacy scale. Qual Life Res 2012;21:1249–53. 21. Taylor G. Psychoanalysis and psychosomatics: a new synthesis. J Acad Psychoanal 1992;20: 251–75. 22. Walker EA, Keegan D, Gardner G, Sullivan M, Bernstein D, Katon WJ. Psychosocial factors in fibromyalgia compared with rheumatoid arthritis: II. Sexual, physical, and emotional abuse and neglect. Psychosom Med 1997:59:572–7. 23. Buckelew SP, Murray SE, Hewett JE, Johnson J, Huyser B. Self-efficacy, pain, and physical activity among fibromyalgia subjects. Arthritis Care Res 1995;8:43–50. 24. Mellegård M, Grossi G, Soares JJF. A comparative study of coping among women with fibromyalgia, neck/shoulder and back pain. Int J Behav Med 2001;8:103–15. 25. Charmaz K. The body, identity, and self: adapting to impairment. Sociol Quart 1995;36:657–80. 26. Scammell S. Illness as a transformative gift in people with fibromyalgia. Dissert Abstr Int 2001;62:2-B. 27. Herman JL. Trauma and Recovery. New York, NY: Basic Books, 1992.

Section IV: Environmental, psychological and psychobiological fluctuations

9 Factors influencing onset, level of symptoms, gaps in pain, recovery and maintenance The results from the inductive analysis of chapter 8 exposed vulnerable psychological functioning from childhood on, and how this unprotected functioning responded to variation in load from stress. The process also included remission of symptoms in a situation of a decrease in mental load. Parallel findings from mapped physical and mental strain during the premorbid stage of fibromyalgia shed light on vulnerable or exposed cognitive-emotional processes and disclosed traumatic experiences, neglect (1, 2), strenuous working conditions (3), self-loading behavior, and activity that is unpaced (4, 5). (Moreover, these findings from the premorbid stage imply the dynamics of insufficient recovery from effort.) Simultaneously, results such as these on strain during the premorbid phase, in terms of traumatic or chronic stress, may be associated with disadvantageous effects on both biological (6–9) and psychological regulatory systems (7, 10). In line with this kind of knowledge on load from stress and subsequent physiological dysregulation, the moderate experimental provocation of a shorter interruption of regular exercise was found to evoke fibromyalgia symptoms in healthy individuals who entered the experimental condition with documented stress and immune system dysregulation. From this result, the researchers behind the experiment suggested that fibromyalgia meant stress axis and immune system dysregulation during an asymptomatic stage (11) (as described in chapter 6).

9.1 The onset Apart from psychological and biological regulatory systems potentially being modeled by strenuous conditions, researchers have also recorded a sharp increase in the load from stress close in time before the onset of fibromyalgia (3, 4, 12). This sharp increase in stress is diverse and stems from both the environment and from specific psychological responses of the individual. The increase in load from stress sometimes paralleled biological regulatory “give-ways” as exhaustion or protracted insomnia (4). In both chapters 1 and 8, a consistent finding from the related studies was that the onset of fibromyalgia was preceded and paralleled by exposure to more than one stressor.

9.2 Environmental aspects Conflicts with a husband/partner or aggression in a close relationship are obvious or easily understood stressors. Such stressors are also recurrently identified as life events that are tied to the onset of symptoms (3, 12). At first sight, a less striking form of strain is diminished emotional support that might be due to a significant other being busy perhaps with worries of their own. Increase in loneliness or even isolation might

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be a side effect of health problem, which can be accompanied by sick listing, this in turn might be a significant challenge in a situation of vulnerability regarding positive affect and the need to be “fueled up” with positive affect from others (4). Divorce or an altered family situation identified in research means stress from alterations, loneliness, negative emotions, and crisis. Exposure to obtrusive behavior or aggression in the workplace might also give rise to feelings of hopelessness and helplessness, especially if being economically dependent. Transitory external conditions, such as extreme weather conditions or breaking down of public transport, might be present at the time of the onset of symptoms in combination with other stressors as related in chapter 8 (3, 4, 12).

9.3 Psychological aspects Difficulties saying no to the demands from others mean a stressful daily life but it also means living a life that is distinguished by an unstoppable potential risk of increase in stress from such demands. These and other kinds of threatening notions of helplessness may also be counteracted by being intensively active, a need to put everything right and an increase in helpfulness. These growing notions of helplessness might be due to nascent ill health other than fibromyalgia and could be accompanied by a phase of trying to undo ill health. Health jeopardizing over activity, acting “overly healthy” in order to undo the existential threat of ill health means a sharp increase in load from stress. Moreover, when health fails, earlier used strategies of perseverance, high speed activity, or pronounced helpfulness (in chapter 1 labeled compensating strategies), become at risk of becoming inaccessible. This, in turn, may create arousal from stress (5) due to frustration or crisis. Localized pain may obstruct the compensating strategies but also challenges the self-image of corporal strength. Other disappointments in life, including identity crises, increase the stress load from negative emotions. The phenomenon of loss of control is also a recognized potential challenge regarding health (13), also present in data. As related in chapter 4 anxiety or depression are also qualities identified in relation to the onset of generalized pain.

9.4 Psychobiological aspects Exercise could be relinquished due to exhaustion and altered working conditions could mean immobility during work and transport. Long hours of static and seated work or many hours spent in the car to get to work, accompanied by fatigue and cancellation of the everyday brisk walks meant “the shape just poured from me … it just cracked me” (see chapter 7). A similar problem is constituted by the loss of full health including insomnia and the ageing process. Also, tied to ageing was obstruction of

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an overactive or “invulnerable” stance, as covering up notions of weakness and helplessness through bodily strength was not possible to the same extent, in turn, creating arousal from stress. Influences in the biological domain were also to be stricken by severe illness or localized pain, meaning a challenge to the self-image of corporal strength and, in case of pain, an increase in load from the pain itself (4).

9.5 Level of symptoms Also when compared to other conditions of long lasting pain (14, 15), fibromyalgia means a heightened level of stress. Unprotected and endangering coping behaviors as avoidant processing of emotions (16) or being perseveringly active, documented from the premorbid stage (4, 14) are found again during the stage of generalized pain (4, 17). Moreover, during the stage of fibromyalgia, these unprotected ways of coping together with environmental stressors logically mean fluctuations in the experience of stress but importantly also parallel fluctuation in pain. From a psychobiological perspective, it could be suggested that fibromyalgia means a stage of transformed stress regulatory functioning where stress means “pain rather than pulse” and, a profile or profiles of the in-itself healthy, phenomenon of decoupling of the stress responses (18).

9.6 Psychobiological influence “… fibromyalgia being discrepant from other chronic pain conditions based on its unique psychophysiological features.” (18)

From controlled conditions in the laboratory, it is known that stressors are experienced as more stressful by patients with fibromyalgia than by healthy controls (18), and that clinical fibromyalgia pain becomes enhanced from mental load (18, 19). Moreover, from the laboratory it was also learned that the more the attenuated the reaction to stress in terms of muscular tension, heart rate and blood pressure, the more intensified the level pain from induced mental load. The anomalously attenuated and the anomalously heightened physiological stress responses were both statistically related to higher levels of pain. In other words, fibromyalgia stands forth as an alteration in the stress response. The blunted reactivity of muscular tension and the heart rate is accompanied by a pronounced increase in skin conductance reactivity and an increase level of pain. Besides showing an inverted relationship to the development of intensified pain, the attenuated heart rate response during experimental conditions was also shown to be tied to a prolonged recovery from the induced increase in clinical pain (19). Further from studying the functioning of the autonomic nervous system (ANS) during sleep in patients with fibromyalgia, an

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attenuated functioning in terms of a decrease in parasympathetic regulation implied a higher level of pain (20). The documented and calculated relationship between blunted physiological stress reactivity and intensified pain are repeated findings. Among these findings was a recording of a blunted, blood pressure modulating, baroreflex function, which meant worse clinical fibromyalgia pain (21). This same pattern also concerns a pharmacological intervention regarding the stress regulatory systems where the level of pain, again, was shown to be related to bluntness of the blood pressure reactivity relative to the substance, together with a comparatively lower baseline level of cortisol and a baseline measure of psychological tensions (22). From all these examples, fibromyalgia pain may be delineated as a two faced phenomenon of both alterations in stress regulatory systems and an ongoing and pronouncedly strenuous psychological process, but, is this a two faced process? From research on fibromyalgia, a process has been suggested of current environmental stressors, life events and traumatic experiences in the life history also being effective in the genesis of the ANS dysregulation. In addition, a dysregulated ANS, in turn, may influence the ability to cope with distress, the ability to regulate emotions, and to employ adequate cognitive resources (21). On the positive side of psychobiology and biology are reports on measures that soothe stress and ameliorates pain. These measures include resting, taking warm baths, or relaxing (23), together with exercise at “recommended intensity levels” (24).

9.7 Psychological influence Negative emotions relate to ANS arousal and milder positive emotions side with the easing parasympathetic branch of the ANS (25), thereby decreasing arousal. These circumstances, in part, may explain that positive affect shows a relationship to a lower level of pain, and that negative affect shows a relationship to an increased level of pain in fibromyalgia. Moreover, the pain in fibromyalgia, unlike in other examined long-lasting pain conditions, increases when positive affect decreases (26). These patterns regarding pain and mental load are crucial as patients with fibromyalgia are found to be vulnerable concerning their positive emotional resources and are also found to have less access to positive emotions than healthy controls or other patients with long-lasting pain. This notable vulnerability regarding positive emotions includes a steeper decline in positive emotions from interpersonal stress (27), and difficulties keeping positive emotions parallel to negative emotions induced from experimental conditions. From the dimension of processing emotions, and in particular negative emotions, we have learned of a pattern of increasing pain from induced anger. Moreover, a less coherent functioning, as in a general tendency to inhibit the expressions of anger, implied a recorded heightened level of pain in daily life. Almost reversely, being more psychologically coherent and to be able to expresses anger, and in addition having

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expressed anger, in an anger triggering situation meant a relief from pain (28). These latter events make the use of defense measures crucial (see chapter 6), and according to van Middendorp et al., the scarcity regarding positive affect could be accounted for by an inflexible defense style where avoidance regarding negative emotions also resulted in loss of positive emotions (16). Psychological incoherence, difficulties processing emotions or habitual avoidance, seem to come with a high cost. Moreover, patients with fibromyalgia, when compared to other patients with pain, show a higher dissociative ability and this dissociative ability was step-wisely related to the level of pain and fatigue (29). Furthermore, the willful, controlling and avoidant defense measure of suppression means arousal from the effort to suppress (30), and also from the ironic rebound process (see chapters 6 and 7). This pattern might be manifested in the subgroup of women with fibromyalgia that reported comparatively more control over pain but also showed comparatively lower pressure pain thresholds (31). The emergency measure of being very active meant “a flare up” of pain (32), however, so does also the event of being deprived of this emergency coping strategy in terms of a heightened level of symptoms, including disturbed sleep and pain (5). The “pain as a guide method” of coherence, body awareness, planning, self-monitoring, and purposeful behavior is an obvious contrast to emergency coping measures (see chapter 6). In addition, the “pain as a guide method” implies purposeful functioning and quick relief from pain but relies on a process of crisis and grief (33). Another example of ability to act purposefully in the service of physical well-being was selfcare strategies, for example, relaxation, walking, or taking hot showers that were related to less frequent pain (34). Whether these strategies were part of a variety of purposeful and flexible measures regarding one’s own needs, resulting in gaps in pain, might be further examined. A lack of control as in a lack of decision latitude are well-recognized health challenging psychosocial stressors in working life. From the viewpoint of stress being effective on altered stress regulatory systems being a main agent in pain, it is not surprising that the sense of being in charge and being able to plan, means a decrease in impact from fibromyalgia. In addition, perceived control when planning and scheduling the household work was significantly related to the measures of somatic functional status and pain (35). As seen in chapter 6, the recognized difficulties processing emotions, including affect phobia and unresolved trauma have been therapeutically addressed. However, these programs of intervention seem strikingly short, especially in the light of knowledge regarding treatment of trauma (36). Nevertheless, avoidance of traumatic experiences and corresponding emotions were addressed through written emotional disclosure during therapeutic sessions and as daily homework. The results were impressive, not least regarding the substantial decrease in pain in about half of the participant but the longevity of these beneficial results seem uncertain. A notable phenomenon from these attempts was the sleeper effect, meaning that there was a delay of several weeks before the effect from treatment fully showed itself.

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9.8 Environmental influence Clinical fibromyalgia pain was found to be enhanced from stress, such as an experimental condition mimicking stressful and repetitive office work (19). Computer or repetitive work and static manual tasks are all documented to be related to increase in pain (37). Reversely, less stressful working conditions, fewer physical or mental exertions, and co-workers being perceived as understanding regarding fibromyalgia was related to both less mental health problems and fewer physical symptoms (38). The significance of social support could be backed-up from research in areas other than fibromyalgia, showing an effect on cardiovascular, endocrine, and immune systems from formation and disruption of social relationships (39). From other research, the well-recognized environmental stressor of noise has been reported to enhance pain as has cold (40). Environmentally ameliorating factors such as warming baths have been documented (23). Regarding social conditions, the socio-economic and environmental factors of a higher income and a higher education have, not unexpectedly, been identified as related to fewer symptoms in fibromyalgia. Reversely, women with less education report significantly more pain. From the domestic environment specifically, relational stress, as in perceived psychological demands from the family members meant a significant and strong effect on the health status, including the pain itself in women with fibromyalgia. These same mighty stressors meant an increase in distress in women with rheumatoid arthritis but not an increase in clinical pain, elucidating that stress from negative emotions, in one category of patients, is evidenced as distress and in the other as pain (35). The stress down regulating event of social support (39) was logically related to less pain (40). Not surprisingly, on the ameliorating side of environmental influence is a wide ranging rehabilitation program. It was composed of single methods (41) and lasted 6 months. It was regarded as too extensive a program by those patients that turned down the offer to participate. In addition, the program was based on group treatment and addressed also the role of significant others. This must have meant that the authority from health care professionals was used in the service of making viable the legitimate health needs on behalf of the patients. The 2 year follow-up showed that the impressive treatment effect after the 6 month program was not only maintained but further improved (see chapter 6). Regarding the wideness of intervention, length of programs, and measures directed towards the domestic environment of the patients, the programs that addresses emotional processing skills are obviously different. The results related in chapter 6 of the 10 month follow-up after treatment and that the earlier promising results were not maintained (chapter 6), might be understood from several angles but the use brief self directed program in treatment of fibromyalgia needs further consideration.

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9.9 Gaps in fibromyalgia pain Based on a large sample from the general population, 345 individuals with widespread pain were identified. Among those, 125 underwent clinical examination and were divided into two subgroups of participants with widespread pain with and without fibromyalgia. These subgroups were then compared to each other. Concerning the group with fibromyalgia, 29% reported not having continuous pain the in last week and 14% reported pain free time every day. The reported frequency of time off from pain was twice as high in the non-fibromyalgia pain group (42).

9.10 Psychological context As seen in chapter 7, there are gaps in fibromyalgia pain, but more importantly, having a conversation about how these gaps were perceived and handled, made visible a pattern of how almost automatic avoidance dominated the lives of the interviewed women (43). This habitual stance was labeled “keeping distress out of sight”. The driving force of avoidance, as in making oneself very busy in order to be absorbed, were the terms of both pain and time off from pain. Perception was also directed onto closeness to work tasks, “completing them” or onto a hobby. The psychological pattern also included self-destructiveness as in being self-loading. In parallel, the interviewees showed little embarrassment regarding carelessness or negligence in relation to health needs. Their self-forcing ways of living were, in a non-judgmental way, referred to as natural expressions of the personality. As negative emotions, such as sadness or grief were avoided, the fact of ill health, including adaptation and a need for selfcare, remained a vague conscious idea. Expectancies in life and life itself was lived “as though healthy” and in a situation like this, there was lack of self monitoring, including difficulties regarding autobiographical memory and purposeful strategies of self-care. Moreover, if the pain got worse, a threatening notion of sadness could be “controlled” by intense activity, in turn, leading to even more pain. Even though the gaps were not planned, more purposeful actions, such as taking a break in an everyday activity or participating in well-paced exercise led by a physiotherapist may result in a gap. Stress free and pleasant activities or encounters as well as socializing or having sex may have caused a gap as did getting absorbed by a hobby. As there was a striving for keeping distress out of sight, but not for breaks in pain, a break might be lost, for example, from being too active. Concerning a subgroup of the informants, a developmental process had taken place. This minority of informants accepted negative affect, managed grief, and genuinely acknowledged the disease. Thereby the gaps were purposefully influenced. These informants created boundaries that meant a less stressful situation in life. A completed process of crisis could take up to a few years. Regarding a good

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situation in life and purposeful self-care, there is a clear resemblance to a data pattern from the stage of recovery in chapter 8, and from pain preventing self care related by Löfgren et al. (33), but also during the stage of recovery (44).

9.11 Environmental regulation The gaps in pain just “happened” to the individuals that belonged to the largest subgroup of informants. Three main types of conditions were related to the gaps. During emotion and stress regulating conditions “those periods of time when you don’t have to worry”, gaps emerged. As related in chapter 7, these stress and emotion regulating environmental influences meant that relief from distress was effortless or “for free”, meaning that they were not in themselves stress-inducing. Tension-free encounters, receiving positive information, closeness, feeling happy or otherwise relaxed, or being on a holiday, especially abroad, were also among the environmentally influenced gaps. A quality of environmentally offered effortless regulation might also be present in the activities such as socializing in a group. From research on stress-physiology it has been documented that a positive effect on the physiological recovery from stress is from environmentally offered distraction (45), similar to absorption. This makes the findings interesting in the research by Giesecke et al. of a distinguishing sense of control over pain in fibromyalgia paralleling a higher level of physical tenderness (also the reported level of pain tended to be higher) (31). Absorption on one hand, and controlling on the other, stands forth as being opposite poles regarding moderating arousal. The third environmentally gap-inducing cluster of conditions were physical or psychobiological; warm temperature during a holiday abroad or relaxed walking might contribute to a gap, as could externally regulated well-paced exercise or dancing. These environmentally and psychobiologically influenced gaps were lost with “the opposite” of the inducing conditions. Regarding the subgroup of informants that truly acknowledged and managed the disease, the environmental influences appeared as significant. Their completion of the process of crisis took place in a situation where they had time to think and contemplate, and taxing relational demands or interactions were moderate.

9.12 Recovery From interviews on recovery from fibromyalgia (chapter 8) it was learned that the informants as children had benefitted from the love and involvement from at least one adult or had an opportunity to identify with a parent experienced as happy, skilful, or powerful. In parallel, their family lives were marked by exposure to high levels of mental load. As adults, their psychological functioning was marked by these two distinct

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aspects of mental life kept apart as in being dissociated. Capable parts of the psyche were used to desert, encapsulate or cover the insecure, unprotected or overstrained parts. In line with more powerful or happy parts of mental life, the informants were educated, formed their professional lives, and gained pleasure from their abilities and genuine wishes were articulated in segments of their lives. These skilful women also had the ability to ask for and receive help from others. Parallel to these abilities, an unclear self-representation meant that they had difficulties setting standards and understanding their health needs. The unclear self-representation also made them vulnerable regarding critics and also easily invaded or overwhelmed. A feeling of always having lived under stress could accompany difficulties to mourn or suffer. “The stress” in their lives could include traces of accumulated trauma and difficulties regarding grief. “Tuning in” into activity might serve as dissociation, meaning that negative emotions might be overshadowed by notions of being able to “take it right”. Strategies of annulments meant that mounting health problems could be met with “decisiveness” and perseverance, as in continuing to work full-time in spite of substantial strain from sleep problems and somatic symptoms. After this or other kinds of increase in mental load and development of fibromyalgia, a high level of mental load was maintained. Feelings of helplessness, and heading for disaster due to being terrified by the fear of the symptoms getting worse and self-doubt from being undiagnosed all contributed to load from crisis. The situation also gave a feeling of stigmatization, as they were not able to communicate the nature of their condition. Due to their obvious abilities, the informants used mastering strategies and sought information about fibromyalgia. Their economic resources and skills were used in order to try out alternative treatment, and, for example, get gaps in pain from these techniques (chapter 8). These gaps in pain were used to keep on working, meaning overexertion. Some of the informants also sought counseling. In a situation of a sharp decrease in mental load, recovery happened and personal growth took place. Personal growth could mean learning to say no (46). The women came to see that their health was dependent on careful management and ways of living and their work style became health-promoting and included self-control in their working life for example. The stage of recovery also meant successful self-regulation and a lifestyle that fitted their self-image, on a healthy level, of being industrious or helpful. Scamell portrayed a process of pronounced personal growth from the stage of recovery from fibromyalgia (47). This process of growth implied a more coherent psychological functioning termed “transformation into a more authentic self ”. This process of transformation meant that the recovered informants had developed “somatic awareness” that went beyond mere adjustment to the limitations imposed by fibromyalgia. The clinical pain was instead apprehended as an indicator of elements in their lives that interfered with “continued well-being”. This, in turn, meant measures of changing career, getting a divorce, or just “expressing themselves more

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directly to their loved ones” (p. 63). The journey towards remission of symptoms was specified in terms of changes in several domains. These changes included a reduced general level of activity, working through personal issues, and prioritizing emotional well-being, holding a positive stance and accepting a long-term process towards recovery. The informants also became their own authorities regarding wellbeing and tried out alternative strategies, such as improving sleep from techniques offered outside of the health care system. At the time of the interviews, the recovered informants on a regular “or as needed” basis went to psychotherapy. In the social dimension, Scamell pictured how the informants had become teachers or mentors for others (as in the AA movement). Mengshoel et al. related how their informants tried out different treatments during the stage of fibromyalgia (44). Further, they saw their clinical pain as expressions of unendurable problems in their lives. During the stage of recovery, an analytical stance of “strain meaning pain” equipped the informants to end new episodes of pain. Logically increased self-awareness and self-esteem were parts of a wider process of change.

9.13 Psychobiological processes Psychobiological influences during the stages of fibromyalgia meant a vicious circle pattern of sleep deprivation, cognitive difficulties as in difficulties remembering, difficulties concentrating or planning, “causing problems while working and a need to work longer hours”, in turn, decreasing time to recover. Cognitive overload, as in difficulties controlling emotions and finding the right words, were also viable during the stage of fibromyalgia. In all informants, a sharp decrease in load from stress contextualized the recovery from fibromyalgia symptoms (46). Research in other fields might prove to be helpful understanding biological processes of the stage of fibromyalgia as problems sleeping are often fueled from daytime stress (48). Moreover, sleep problems themselves mean daytime physiological changes that are the same as from stress, including, for example, a changed heart rate and level of cortisol (49).

9.14 Environmental context In the recovered women, an interesting job might partly have compensated for setbacks from somatic symptoms during the stage of fibromyalgia. Moreover, the stage of fibromyalgia was environmentally influenced by the emotional and practical support from relatives, from marriage, from work, or from friendships. This support counteracted helplessness, loneliness, and despair. A good relationship with a good doctor who showed empathy was highly valued. A further stage in the process was a pronounced environmentally influenced decrease in mental load. This decrease in load was accompanied by recovery from generalized pain and the other

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symptoms of fibromyalgia. The mental load decreased or the life situation was considerably improved, either as “a gift from above” or as an outcome from the women themselves having taken measures that made way for a decrease in load. The platform of diagnosis from a medical doctor could mean a sense of control, meaning a decrease in mental load. Other examples were happiness from an improved family situation or relief from social pressure and humiliation through retirement. As a result of different causes, there was also a cease of overexertion and these events were accompanied by remission of symptoms (46). For women who recovered later on, Mengshoel et al. documented a pattern from the stage of fibromyalgia, of doubts from friends, family, and medical doctors regarding “the reality” of experiencing fibromyalgia symptoms (44). To be confronted with this “suspicion” meant additional strain as “trust and support” were related as crucial when coping with the symptoms of fibromyalgia, and importantly, regarding the process of recovery. From the results of Scamell it was shown that all the informants belonged to the middle or upper middle class (47). Mengshoel et al. reported a similar social context where the informants had given priority to their own needs and thereby had achieved new educational qualifications that meant new promising job prospects (44). A similar pattern of socioeconomic conditions was recorded by Wentz et al. (46).

9.15 Maintenance as in a maintained level of stress? Naturalistic data pattern models have pictured two stages in the development of fibromyalgia (chapter 5). The second model (see Figure 5.2 in chapter 5) visualized maintenance of fibromyalgia and different agents involved in a maintained heightened level of load. The model further showed an interplay between these agents, as difficulty handling stimuli and affects, an impaired self-reference, a threatening world of experiences, difficulty solving problems, and improving conditions of life. This interplay also embraced strategies of trying to compensate for the aforementioned vulnerabilities, such as suppressed thinking, an exhausting level of activity, or pronounced helpfulness. These emergency coping strategies might also be blocked due to pain or dullness. Impaired cognitive functioning and load from an altered life-situation also contributed to a strenuous level of load. Lundberg et al. mapped psychological functioning in fibromyalgia (17), and their result showed obvious similarities to the agents of the chapter 5 models. The Lundberg group employed quantitative methods, and the wide instrument Temperament and Character Inventory (TCI) (50). The psychometric scores of 191 female patients with fibromyalgia were obtained. Their scores were compared to the scores of healthy volunteers and the qualities that most distinguished the fibromyalgia group when compared to the controls were statistically calculated. Not surprisingly, fatigue was found to be the most distinguishing feature followed by the qualities of persistence, a vulnerability to react with anxiety and pessimism to everyday frustrations, self-forgetfulness, and

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a lack of self-directedness. A wider analysis of the psychometric data also revealed a combination of rigidity to change and ways of dealing with life. There was also a tendency to continue activity in spite of being exhausted (persistence). The researchers discussed these discovered psychological patterns as agents in both development of fibromyalgia and poor coping skills during the stage of fibromyalgia.

9.16 Psychological functioning On a psychological level, we might ask ourselves what these sprawling qualities mean. How should we understand these seemingly different sorts of psychological functioning that were recorded? Simultaneously, an awe-inspiring rate of over 55% of patients with fibromyalgia suffer from post-traumatic stress disorder (PTSD) (51, 52). PTSD is characterized by hyper-vigilance and nightmares or flashbacks from traumatic experiences. Such events are not at the center of the documented patterns of chapters 5 and 7 or the profile related by Lundberg et al. (17). In order to try to show whether induced patterns on psychological functioning, with which women with fibromyalgia entered their adult lives, could be coherent expressions of a mutual factor in terms of traumatic experiences, “unprotected self ” (chapter 1), a psychometric scale was developed in 2004 (14). The qualities of “unprotected self ” were transferred into a scale of 89 items that covered, for example, impaired signaling (bodily signals) and affect functioning, psychologically being invaded by others, impaired autonomy, impaired self-definition, difficulties improving conditions of life, compensating intensive activity, redirection of perception, pronounced helpfulness, dissociation, and suppressed thinking. In a further step, the homogeneity of the scale was calculated in terms of a Chronbach’s alpha value. The Chronbach’s alpha value was found to be high (0.88), indicating consistency of the scale or that the scale captured one latent construct termed “unprotected self ” (14). In 2005, van der Kolk et  al. discussed how the widely recognized diagnosis of PTSD still does not capture the reality of the much wider aftermath from trauma (53). The researchers summed up epidemiological research and related that men are most frequently traumatized as adults by accidents, war, natural disasters, and assaults. Traumatization in women is by far most frequently caused by child abuse. Moreover, women are comparatively more often attacked in their intimate relationships, which could be contrasted with the fact that men more often are attacked by strangers. In order to examine the wider effect from trauma, van der Kolk et al. reviewed the literature and compiled 27 symptoms of “disorders of extreme stress not otherwise listed” (DESNOS). In a subsequent field trial, a study group of individuals who sought mental health treatment and a community sample were examined. The result from this field study was that victims of prolonged interpersonal trauma and trauma that first occurred at an early age, and in an interpersonal setting, had obvious effects on psychological functioning that went “above and beyond” the symptoms of PTDS. These effects

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from early trauma or prolonged interpersonal trauma were described and classified as difficulties in the areas of regulating affect, memory and attention (including dissociation), self-perception, interpersonal relationships, somatization, and systems of meaning. The category of somatization was not fully explained but specified in terms of symptoms from the digestive system and chronic pain. As seen from the above field trial trauma potentially not only causes a sustained level of stress but also difficulties regarding regulating affect (DESNOS) (53). A pictured background of traumatic experiences in fibromyalgia makes it interesting that examined patients with fibromyalgia made more use of avoidant strategies in order to regulate and process emotions than a group of controls. These recorded emotionally avoidant strategies in controlling and processing emotions were related to higher levels of negative affect during the stages of fibromyalgia (54). A further finding was a comparatively heightened level of negative affect and a lowered level of positive affect during the stage of fibromyalgia. Zautra et al. also showed that patients with fibromyalgia had less access to positive emotions than other groups of patients with long lasting pain (27). When trying to understand the maintenance of fibromyalgia, the findings from these two research groups are truly meaningful as it is known from research on stress and emotion that negative affect means a heightened arousal from stress (25). Moreover, in relation to the arousal from negative affect, positive emotions are found to counteract and down regulate the physiological stress activation (55, 56). Only fibromyalgia means less access to positive emotions (27, 54).

9.17 Impaired cognitive functioning is a part of a cognitive-emotional pattern One of the most intriguing qualities tied to fibromyalgia might be the pronounced persistence during the premorbid stage and even during the debilitating stage of the disease. This action prone pattern is also known in relation other conditions, for example, chronic fatigue syndrome, a condition with a pronounced overlap with fibromyalgia (5). Moreover, relentless activity or persistence can mean a flare-up of fibromyalgia pain (32) but also a tendency to continue with activities even if exhausted (17, 43). These self-harming measures make decision making in fibromyalgia a weighty topic. In 2011, a study group with fibromyalgia was compared to healthy controls on an emotion-based decision-making “gambling” task. The task meant increasing the reward in money and minimizing the loss by sampling cards from decks. The participants were told that there were favorable and unfavorable decks. They then had to figure out which decks were the favorable ones and which were the unfavorable ones. During “gambling”, the fibromyalgia study group showed a flat learning curve when figuring out the decks. Concretely they showed a greater number of random choices between favorable and unfavorable decks of cards between repeated trials (57). This same learning curve related to fibromyalgia of the same gambling task was

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also found in 2009 (58). A variant version of the gambling task meant that the decks of cards represented either high loss with delayed high gain, or low loss with lower delayed reward. In this variant version, the participants with fibromyalgia showed the same result as the group of controls (58). The results from these two variant tasks taken together, and in the light of other research, can be interpreted as a sensitivity to reward and relative insensitivity to punishment on behalf of the fibromyalgia group. This decision making pattern of sensitivity to reward and insensitivity to punishment may be considered regarding the attraction of getting absorbed from being very active (escaping a strenuous inner life) that seem not to be counter regulated from the punishment of “flare up of pain”. As the stage of maintenance means a comparatively heightened level of mental load and, importantly, that induced stress is experienced as more stressful as compared to controls (18), the pattern of persistence needs to be examined in the light of both chronic and acute stress. Recently, researchers have begun to describe experimental findings regarding decision-making and brain functioning in the context of stress. From their results, we can learn of a shift in the activity of the brain from locations related to flexible cognitive functioning, including goal directed behavior to locations of more rigid habitual behavior (59). Plessow et  al. found an effect on healthy individuals on their cognitive control processes from acute psychosocial laboratory stress (60). This effect concerned flexibility making task-goal implementations essential for switching goal-directed behavior under altered conditions. The research group discussed their results in terms of taxing of resources related to flexible behavior under stress but not related to repetitive behavior. In yet another laboratory trial, healthy individuals were examined regarding learning and reversal learning that required flexibility and goal-directed action. One study group was chosen based on exposure to high stress at work and the other group on low stress at work. Both groups reported more stress during the reversal learning condition than during learning. In the high stress group, trial-by-trial action pattern, also termed habit action, was found as opposed to the more goal-directed behavior of the low job stress group (7). Further, an association between high stress (working conditions) and an unfavorable cognitive emotional response pattern was reported by Aronsson et  al. (61). This persistence like pattern implied working more intensively, skipping breaks, and working when ill. Moreover, these high stress working conditions also included less cognitive (and social) support as 87% in this high stress study group (from home care, preschool, and social work) also reported that they did not have enough time for reflection and discussion at work. Based on these recent findings on cognitive functioning during stress, and on findings regarding decision making in fibromyalgia, the major coping strategies both before and during fibromyalgia could be termed a cognitive emotional pattern, for example, persistence and a high level of activity in spite of an increase in symptoms. A cognitive-emotional framework could integrate the knowledge on the aftermath of trauma, including dissociation and difficulties regulating affects with the effects from long-lasting and acute stress on cognition.

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A sensitivity to reward and an insensitivity to “punishment”, including habitual instead of goal-directed behavior, for example, makes understandable the persistent use of the self-loading compensating strategies (counteracting helplessness) of chapters 1, 5, and 6. This described dynamic does not set more traditional explanations of unhandled emotional experiences and compulsive repetition aside. The delineated cognitive-emotional functioning suggests that the process of adapting to illness (62) is more difficult to complete. Simultaneous documentation on fibromyalgia continuously contains subgroups with a more successful self regulation, who work through crisis and enters the road of adaptation. In chapters 5–7, these subgroups were elucidated in terms of grief and adaptation including the “pain and stop strategy” (33), self-care resulting in gaps in pain (34), and planning and caring for health and gaps in pain (43). The recovered participants in the Mengshoel et al. study received new educational qualifications and improved self-esteem (44). They also seem to have impressed the researchers by their analytical capacity. They found out what was good and bad for their health in order to avoid developing chronic symptoms once more. More evidence of subgroups with a more robust cognitive emotional functioning might have been identified in an article from 2010 on symptom severity (63). The study showed that after a duration of 10 years of fibromyalgia, there was a modest increase in the proportion of participants that reported milder symptoms. The authors suggested that this might be due to an adaptation to the disease and improved skills to cope with a condition that is assumed to be chronic (63). Logically, we have to learn from these, for example, cognitively more robust and “adapting” subgroups in order, in tailored and better ways, to back up rehabilitation and alleviation of symptoms.

9.18 Psychobiological dysregulation Maintenance of fibromyalgia could be embraced as a maintained “relevant” level of symptoms (that fulfill the ACR-90 diagnostic criteria). In this spirit, patients with the syndrome have been asked to self-estimate the severity of their condition. The scale ranged from very mild to moderate to severe fibromyalgia. When the grade “severe” was chosen, it embraced a higher level of pain, sleep disturbance and depressive symptoms but also the level of medication in relation to fibromyalgia. Another identified association with grading the condition as severe were of co-morbid conditions of back pain and neck pain (63). The influence from sleep on the severity of the condition is also emphasized by other reports (see chapter 6). In addition, a comparatively better quality of sleep has been shown to predict improvement in fibromyalgia over a number of years (64). Moreover, fibromyalgia symptoms have been produced from experimentally disturbed sleep in young healthy adults (65). In chapter 6, different circumstances, including environmental influences, psychobiology as in sleep, and psychological functioning and variation, in mainly pain,

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were scrutinized together. When tentatively fitting the different pieces together, the plainer picture showed on one hand the variation in the cardinal symptom of pain and, on the other hand, the route of what would have been the rise and fall of the stress response to different kinds of strain. What makes this picture remarkable is that, in fibromyalgia, the stress response is altered in other words dysregulated. Where there should have been a usual physiological stress response, instead appears as a lowering of the nociceptive thresholds, a “pain rather than pulse” pattern. Expressed differently, the nociceptive thresholds seem to be regulated by stress, such as physical load and negative emotions, but thereby also reversely by good company, happiness, and harmony, etc. The phenomena of redirection or dysregulation of the stress response, including a decoupled response of the stress system is also known from other areas of research (66) and in healthy volunteers (67). Besides different measures of physiological dysregulations, co-varying with the level pain (chapter 6), other significantly altered regulatory mechanisms have been identified in fibromyalgia. Elert et al. found in a fibromyalgia study group, an inability to relax, all examined muscles between contractions (68). In the control group with localized muscular pain, the inability to relax between the contractions concerned only the painful Trapezius muscle. A somewhat related finding on dysregulation was the inability to activate pain inhibitory mechanisms during exercise in a study group with fibromyalgia and a group with shoulder myalgia. The shoulder myalgia group specifically employed the painful muscle. However, when the shoulder myalgia group contracted a non-painful muscle, the pain inhibitory mechanisms were activated the same way as in healthy volunteers. The activated pain inhibition functions even reduced the pain in the painful shoulder muscle (69). Further evidence, on a blunted inhibition of pain, was noted by Jensen et al. who examined the brain from the perspective of responding to an experimental pain provocation (70). The researchers found firstly, a heightened sensitivity to pain on behalf of the fibromyalgia group, secondly, an inaccurate and blunted response of the descending pain regulatory system of the brain, which did not respond accurately, as evidenced by functional magnetic resonance imaging technique. Further findings regarding regulatory mechanisms in fibromyalgia include elevated levels of pro-inflammatory activity in the central nervous system as well as in the blood stream (71). Dysregulation of physiological responses could be fitted into a broader picture of both traumatic experiences and of long lasting stress. When Ohira et  al. examined cognitive flexibility, as in goal directed action, of a high job stress group and a low stress group; the activity of the brain was mapped through registration of regional blood flow (7). Regarding the low stress group, activity of brain regions that are related to goal directed behaviour, was recorded. In those described areas, the high stress group showed no activity at all. Moreover, the flexibility of adjustment to the stress task in terms of an increase in blood pressure was recorded as well. Both groups experienced the tasks as equally stressful, but the high job stress group exhibited

9.19 Working life 

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a blunted reactivity in terms of diastolic blood pressure. This finding was discussed in terms of the brain, including the cortical areas being involved in the regulation of blood pressure. Regarding fibromyalgia, we may be able to word a situation of less flexible adaptive capacity of the brain, expressed by, for example, altered decisionmaking, including habit action as in persistence, but also as a blunted physiological adaptation or reactivity. It could be suggested that the individual with fibromyalgia meets acute stress with already blunted adaptive resources, as in the Plessow’s experiment (60), that gets even more taxed and blunted, both regarding the physiological and the cognitive output. The role of traumatic experiences in physiological dysregulation could be illustrated by the findings of Lovallo et al., who examined over 300 healthy adults in their early twenties who were also exposed to laboratory stress (72). The result showed that participants of both sexes that had experienced adverse life events before the age of 15 showed a blunted reactivity to the stress in terms of cortisol and heart rate. This reduced physiological adaptability also followed a dose response pattern of more adverse experiences, meaning more of an altered stress response. Both groups showed a similar resting heart rate.

9.19 Working life In 1999, Researchers Henriksson and Liedberg documented everyday conditions of life and fibromyalgia in an article on work disability (73). They concluded that many women would continue to find satisfaction if their work situation was adjusted. This is a vital consideration from the angle that a not consuming but instead stimulating employment (such as in hobbies) benefits a decrease in pain as reported in chapter 7. Considering that fibromyalgia means a high level of stress, findings from research on stress in healthy individuals are potentially valuable. Interestingly, in an experiment that examined how the physiological stress response, from induced psychological stress (harassment), was affected by later induced absorption, a subgroup of participants were subsequently given a stimulating but emotionally rather neutral employment. The important finding was that this employment significantly reduced the arousal (47). It seems as though a stimulating employment can momentarily alleviate mental load including the physiological route. Henriksson and Liedberg further concluded that when the diagnosis of fibromyalgia is given, this should be accompanied by a discussion of the work situation of the patient (73). The patient should be informed of what could improve the possibility to work including interventions in the work place. As related in chapter 6, fibromyalgia symptoms are amplified, for example, from repetitive work and static manual tasks. Rakovskij et al. point at stressful working conditions as related to increase in symptoms (38). A further finding of Rakovskij et  al. was the need for the co-workers to be perceived as understanding regarding fibromyalgia (38). Understanding benefitted both physical and mental

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health. These results on amplification or amelioration of fibromyalgia symptoms parallel stress physiological research results including profiles on response to working conditions, both in terms of load from stress and access to social support (74). Rakovskij et al. also referred to other research when they discussed what fibromyalgia might mean in the exclusion from working life, this could include isolation from others, loss of professional identity, and feelings of not being needed (38). A more limited social life connected to emotional and psychical health status was also identified in the fibromyalgia group when compared to the control group in chapter 5 (14). As already related, lack of social support deprives a major source of natural soothing of stress. Social support has been found, from research in other areas, to be a stress down regulating factor (75). It has also shown to have a direct pain amelioration effect on experimental pain in fibromyalgia (76). Conditions such as these might also hold explanatory power behind findings regarding marital stress, work related stress, stress in everyday life, and social stress that have been found to be increased in fibromyalgia. That health also depends on those close by, is also indicated by the finding by van Middendorp et  al. regarding the level of pain being highest on Fridays and lowest on Sundays in women not currently being employed outside the home (28).

9.20 Knowledge and power As related in chapter 6, Reisine et al. found that perceived autonomy and perceived control when scheduling the household work had an effect on the somatic functional status and pain (34). When trying to understand further the impact from control on health and wellbeing, a sketch made from various research by Sonnentag and Fritz is helpful (77). From this sketch, we can learn that the sense of control is a general desire in humans. Furthermore, the sense of being able to control events logically benefits reevaluation during stress and the sense of control potentially also lowers distress and increases well-being. Not least, an experience of low control is of significance as it affects the self-image and may foster a negative self-evaluation and a decrease in self-worth while being associated with different kinds of distress. The potential for positive affect inherent in the sense of control is noteworthy from the angle of cognitive functioning. From an experimental design, a high level of positive affectiveness was shown to be a prerequisite for successful cognitive performance during stress (78). It seems as though robust robust cognitive performance relatable to positive affect and can be supported by a life situation marked by a solid sense of control. The need for cognitive or “mind map” control, as in understanding more about the condition of fibromyalgia, is illustrated by Barbour (79), who reported that getting information about fibromyalgia, through books, videos, etc., was rated by individuals with fibromyalgia as the most valuable, so-called, alternative treatment. The potential role of health care in reinstating control through solid education was also illustrated by White et al., who reported on previously non-labeled patients from

9.21 Discussion 

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the community that were contacted and diagnosed for research purposes (80). Three years after diagnosis from a medical doctor, these newly labelled patients exhibited a decrease in symptoms, including the major symptoms. Moreover, their satisfaction with health had increased, and they had become a bit less active. The researchers hypothesized that the decrease in symptoms stemmed from medical care, which resulted in improved pacing of activities. In line with this, Scott documented that patients with fibromyalgia that found themselves “ having been taken seriously” by health care showed a lower degree of symptoms when compared to other patients with fibromyalgia (81). In this area, a valuable insight stems from sociological research on adapting to chronic illness, in terms of women and young individuals of both sexes being more likely than others to be met with disbelief when suffering from long lasting “invisible” diseases (62).

9.21 Discussion “Speculations that fibromyalgia and post-traumatic stress syndrome share psychobiological risk factors remain plausible.” (82)

In 2005, van der Kolk et al. debated that the diagnosis of PTSD only focuses on one aspect of the aftermath of trauma, namely the memory imprints of the traumatic events and that this constraint focus does not fit with a number of other findings regarding the consequences of trauma (53). Moreover, in individuals that suffer from PTSD the qualities that constitute the PTSD diagnosis are found rarely in a pure form. Instead, the difficulties of memory imprints of events are accompanied by other forms of maladaptive psychological functioning that involve perception, cognitive processing, and personality development, all together parts of a wide psychological breakdown of adaptation. Furthermore, these wider psychological consequences of trauma were considered to cause more functional limitations than PTSD itself, which means that this wider breakdown of adaptation needs to be given first priority regarding treatment (53). An obvious source of more concrete knowledge about psychological consequences of trauma concerns ongoing attempts to cope with traumatic exposure. This body of knowledge involves children living in women’s shelters. In 2002, Almquist et al. examined psychological functioning in children from families where the mother was physically abused (83). The research group documented a pattern of the children being extremely helpful, attentive, and comforting towards their mothers. Parallel to this care-giving pattern, they were age-wise overly dependent on adults. Furthermore, the children made an effort “not to think” and were unusually active, constantly keeping themselves busy. This pattern was in parallel with the children being able to concentrate and accomplish tasks at other times. A pattern of disturbed sleep was also recorded.

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In the 1960s, Kahn separated “shock trauma” from “strain trauma” and described the situation of a small child where the primary caregiver repeatedly failed to be supportive in relation to mental strain (84). This implied that the child had to endure ongoing mental overload that, in turn, resulted in insufficient establishment of a both sufficient and useful self-awareness (based on the body awareness), and a coherent self-image. In addition, developmental setbacks such as these were also paralleled with compensatory processes that suggest that some psychological functions were accelerated in growth and these accelerated functions were then used for defense purposes. Besides these accelerated functions, a pronounced childlike dependency was maintained but at the same time dissociated from overt and more asserted independence (84). A similar childhood two-fold strain trauma is the “trauma and taboo” pattern documented by Wentz (to be presented elsewhere) in the context of development of fibromyalgia where a negative affect, such as grief and mourning are tabooed by the parent in a situation, for example, where the child faced a painful loss, such as the death of parent. To the class of strain trauma (84) could also logically be added, traumatization from socioeconomic disadvantage or isolation as a child, related by Kiecolt-Glaser et al. (85).

9.22 Chronic or traumatic stress: cognitive and physiological correlates Early life adverse experiences may disrupt the potentially adaptive response to stress (86). The systems that respond to stress are highly intertwined and facilitate short-term adaptation to altered conditions that also includes psychosocial challenges. In 2012, this intertwined response to environmental threats of the nervous system, the endocrine system and the immune system, was pictured. It was further exemplified in terms of the reaction of the sympathetic nervous system that in turn, triggered inflammation that prepared the protection of the body in case of damage. These processes were further paralleled by the response of the hypothalamic-pituitary-adrenal HPA axis that responded to the same stressor, in turn, concurring with the ANS parasympathetic branch, switching of the arousal. In these events, other regulatory agents such as the prefrontal cortex and the amygdala also played parts in handling the environmental threats and were further involved in triggering the ANS and HPA response. Moreover, the prefrontal cortex and the amygdala, both model cognition, such as attention and reflection (87). Furthermore, regarding these stress regulatory systems, researchers have frequently described various functional changes in the context of early life stress, including trauma (72, 88) or socio-economic conditions (89). In addition to early life stress, acute stress (60) or long lasting stress during adult years (7) have been found to induce alterations of the functioning of the stress regulatory systems, including cognitive performance and cognitive style (7). As related earlier in this chapter, alterations such as a blunted cardiovascular reactivity and fewer flexible and less goal directed actions, recorded in terms of

9.22 Chronic or traumatic stress: cognitive and physiological correlates 

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alterations of the activity patterns of the brain during experimental stress, were described by Ohira in healthy participants with high stress jobs (7). Another example of altered functioning from cumulative mental load is that the number of traumatic childhood events reported by healthy young adults showed a step-wise or linear relationship to the level of blunting of the cardiovascular and cortisol response to experimental stress. These blunted responses could not be explained by altered subjective experiences during the experience of experimental stress. Moreover, the blunted regulatory response of the stress axis was not statistically related to socio-economic status (72). Parallel findings such as these also make possible reflections on the antinociceptive role of appropriate autonomic arousal and the phenomenon of central sensitization as in fibromyalgia (see chapter 6). The documented findings on fibromyalgia and alterations in stress regulatory systems imply the necessity for investigation of benign localized pain of the loco motor apparatus that in 75%–87% of cases precede development of fibromyalgia. In addition, in this area the principle of cumulative load attenuating the appropriate adjustment of stress regulation may be applicable (89). One example of attenuated functioning and development of localized pain is the finding in 1993 by Veirestedt et  al. that development of localized pain was related to dysregulation of muscular tension, meaning a pattern of sustained tension as in fewer gaps in recorded electromyography (90). Moreover, that psychosocial stress is a major factor in development of localized pain has frequently been shown from statistical calculations, for example, by Vikari-Jontura (91), Grimby-Ekman et al. (92), and Larsman et al. (93). Importantly, from longitudinal design Grossi et al. (94) reported that the core symptoms of burnout (exhaustion and cognitive difficulties) seem to contribute to both onset and maintenance of pain. In addition, severe occupational stress has been shown to embrace morphological changes of the brain potentially affecting motor functions (95). This MRI based identification of atrophic patterns also made the researchers advocate both pre- and post-treatment mappings of motor functions in relation to psychosocial load. From these perspectives, fibromyalgia may be grasped as a step further than localized pain on a continuum of cumulative load and subsequent alterations of the intertwined stress regulatory systems. This dynamic situation may also prove weightier than the dynamics of a nociceptive barrage stemming from localized pain considered to cause worn-down pain inhibitory functions. As related in chapter 6, a study group of patients with localized pain, showed a physiological response to experimental stress that was termed intermediate to the responses of a study group with fibromyalgia and a group of healthy controls. Moreover, this intermediate physiological response to experimental stress was by the researchers discussed in terms of the two groups of patients sharing the same pathological mechanisms but the fibromyalgia group being “more affected”. An alternative explanation was that the recorded responses mirrored chronic pain and that the study group with fibromyalgia experienced more pain (19). The level of fibromyalgia pain has been found to show a linear or step-wise relationship to the attenuation of the physiological response to experimental stress (18, 19) tentatively conceptualized into a “pain rather than pulse” pattern. This

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linear association did not apply to localized pain (19). Riva et al. described a blunted pattern of the ANS in fibromyalgia where a study group with fibromyalgia showed a heart rate similar to healthy controls during activity but also a contrasting pattern of a heightened heart rate during sleep and relaxation (96). This blunted effort-recovery physiological pattern also included lower levels of adrenaline during both day and night on behalf of the fibromyalgia study group. These findings were summarized by the research group in terms of an attenuated functioning of both the sympathetic branch (fight and flight) and the parasympathetic branch (rest and digest) of the ANS. In the context of physiological responses to pure physical load, a similar less adaptive pattern was evidenced by hypo-responses of both the HPA axis and the ANS to physical exercise in fibromyalgia. In parallel, the level of an inflammatory marker protein (CRP) showed a double value in the fibromyalgia study group as compared to controls (97).

9.23 Inflammation The immune system is among the mediators that help us to adapt to diverse challenges, and cytokines are among the agents of the immune system. Cytokines have also been found to be active in regulating sleep independently of their fever inducing role (89). In line with earlier reasoning on an altered stress response in fibromyalgia, fibromyalgia has been suggested to be a condition of increased levels of cytokines, including a deficient asset of versatile hormones that counter regulate inflammation (89), both pro- and anti-inflammatory. Moreover, from examination of a study group with fibromyalgia it was documented that elevated levels of pro-inflammatory activity in the central nervous system as well as in the blood stream (71). From the viewpoint of examining potential etiological factors in fibromyalgia, and from suggestions on the etiology and the search for efficient rehabilitating measures, an interesting finding was presented by Pace et al. (88). This research group found an increase in current inflammatory activity, in women with a history of child abuse and with current PTSD. From further data analysis, these researchers suggested that the current increase in inflammatory activity was related to current PTSD rather than to a history childhood abuse. Lemieux et  al. found that in a study group of adult women with a history of childhood maltreatment, the inflammatory activity was higher in women currently diagnosed with PTSD (98). Furthermore, the inflammatory activity PTSD showed a step-wise or linear relationship to the level of intrusive symptoms, and interestingly, an inverse relationship to avoidance. A parallel research result stems from Croy et al. that documented perceptual alterations (increased stimulus sensitivity) in women with a history of child abuse, but only in the subgroup of women with current PTSD (99). From an experimental design, Carpenter et al. found that healthy adults with a history of child maltreatment and without depression or PTSD showed a greater proinflammatory response to induced stress than the group of controls (100). Moreover, Gouin et al. compared the inflammatory response and results from semi-structured

9.24 Considerations on treatment. What are the targets and the means? 

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interviews on stressful events that occurred during the previous 24 hours in family dementia caregivers (mean age around 65 years) and non-care giving controls (101). The Childhood Trauma Questionnaire was used to assess abuse during childhood in the caregivers. After analysis of all the collected data, a pattern appeared of a history of childhood abuse in the caregiver being associated with a more than a doubled amplification in pro-inflammatory cytokine response to daily stressors. From another study on childhood maltreatment, the life course and adult inflammation, a group of researchers suggested that more than 10% low-grade inflammation in the population might be associated with childhood maltreatment. These researchers further discussed that childhood abuse is a preventable factor in poor adult health and that the long-lasting effects from maltreatment might be reversed from psychotherapeutic and pharmacological treatments (86).

9.24 Considerations on treatment. What are the targets and the means? When considering fibromyalgia and fibromyalgia symptoms, an emerging summary is that fibromyalgia implies a condition of, firstly, a heightened level of stress. Secondly, a dysregulated stress response. Thirdly, clinical pain that varies with the load from stress. Fourthly, a level of clinical pain that is “settled” by degrees of attenuation of the physiological stress response. Fifthly, an ongoing and pronouncedly strenuous psychological process, for example, dysregulated processing of emotions. In this book, the phenomenon of persistence during ill health is frequently debated and a major reason for this is that it contributes to a heightened level of stress. In addition, persistence suggests that emotions are unsuccessfully regulated but most of all persistence relates to difficulties concerning crisis and mourning (33), including the necessary and gradual process of adapting to illness. The adapting to illness process is in detail, partly both discovered and described by Charmaz (62), who collected naturalistic data on life with different long-lasting conditions, such as rheumatoid arthritis, multiple sclerosis, kidney disease, and stroke. Data patterns were extracted from 140 interviews and showed a process that took off with a self-reference that implied a lost unity with the sick body. This lost unity, in turn, meant repeated trials to oppose and compel the sick body in order to live “as before”. A subsequent journey of adapting to illness meant stage-wise reunion with the body, thereby gradually relinquishing the illusory control over the illness. The previously detached sick body was attended to, thereby replacing the illusory controlling stance. In parallel, a dawning truer and more coherent self, made genuine self-care possible. Thus, the adapting to illness process means, step-by-step, refraining from dissociation in favor of championing the needs of the body as they come up, and living with but not for the illness. Charmaz detailed portrayal of a natural history process that resolved a lost unity with the body also poses serious questions on whether this process could be made

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easier by facilitating the processes of crisis and despair, while supporting a dawning truer self, based on self-respect and self-care (62). Some answers to these questions might already be present and found in research on self-care and health measures in patients with diabetes. From a comparison of competing methods from Swedish settings, it was documented that support group based education also employed subject competent teachers, which showed superior results concerning adaptation and selfefficacy. The superior results from the support and educational group arrangement was clearly evidenced by, long-term, blood glucose control values (HbA1c) (102). Emotional processing, dissociation, and “adapting to illness” processes are from a more pure psychological angle, closely related to the difficulties associated with accelerated growth of psychological functions from strain trauma (84). Such accelerated or compensating functions imply persistence or self-loading behavior and could advantageously be dealt with through support groups, including elements of education. In this kind of setting, group members could serve as role models to each other in a process of developing more coherent self-reference, and thereby, expand selfefficacy. Improvements in self-efficacy during rehabilitation has been shown to create better outcomes regarding both pain and disease severity (103). Belonging to a supportive and educating group may also lend the experience of conditions of safety as a sense of power or control that are foundations in recovery from trauma according to Herman (36). This way, support groups in a serious way could also complement individual psychotherapeutic treatment and socio-economic interventions. Logically the support group activity needs to be a long-term arrangement and to a degree involve partners or friends, ensuring a supportive climate outside the treatment setting. Concerning the single patient, whether the heightened level of mental load stems from environmental factors, a strenuous psychological process, or psychobiological dysregulation (e.g., insomnia), we have many reasons to suggest that the problem of mental load is addressed in rehabilitation. Decrease in load is related to alleviation of symptoms (23, 43, 46) and inversely stress fosters clinical pain (40), affects sleep negatively (49), and fuels dysregulated psychological functioning as in dissociation (104), or less flexible goal directed decision-making (7, 60). In order for treatment to address accurately mental load issues, patients with fibromyalgia should be offered psychological evaluation. The rationale behind targeting mental load and other sources of making fibromyalgia more severe must be communicated thoroughly to patients seeking assistance. Furthermore, findings on measures that are more directly effective upon physiological functioning, and thereby, also effective on fibromyalgia symptoms, for example, exercise (24), deserves our attention. In other words, treatment measures have to address both psychological processes and processing as well as physiological functioning and environmental load. How these measures are combined have to be based on thorough evaluation of the needs of the single patient that seeks our assistance. Moreover, during the process of evaluation the patient should be presented with means of treatment and asked with which of these means she or he wishes to commence the

References 

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Section V: Acknowledgements

About the author Kerstin Wentz is a licensed psychologist with a PhD in psychology. She holds a position as a clinical psychologist in the Department of Environmental and Occupational Medicine, Sahlgrenska University Hospital, Gothenburg, Sweden. She diligently pursues research in different research projects as well as her clinical work, teaching, and supervision duties. She has been appreciated for her academic presentations, particularly with fibromyalgia and the effect from stress on health. Her professional background as a clinical psychologist includes the areas of child and adult psychiatry, pain rehabilitation, rehabilitation after myocardial infarction, and cystic fibrosis. Her main professional interests are developmental psychology, group processes, and the interface between psychological functioning, physiological processes, and conditions of life. E-mail: [email protected]

Acknowledgements I would like to thank Professor Trevor Archer from the Department of Psychology, University of Göteborg for his time, his expertise, invaluable advice and supportive ways. I would further like to thank my daughter for her patience and my friends for their inspiration and warmth.

Index absence of fear 108 absence of tension or stress 110 absorbed 114 absorption 89, 110 absorption as a complement to dissociation 90 abuse and aggression in a close relationship 66 Abuse and neglect 56 accelerated functions 162 Acceptance of fibromyalgia meant creating pain gaps 112 accidents 55 accumulated trauma 127, 151 action proned 59 action prone pattern 155 active lives 59 activity intensifies pain 109 adapting to chronic disease 115 adapting to illness 165 affect phobia 94, 147 affluent citizens 4 aftermath of trauma 156 ageing process 66 aggression in the workplace 144 alcohol 50 alexithymia 12 allied health professionals 92 alloplastic competence 127 altered life-situation 28 altered situation in life 76 alternating rest with exercise 85 alternative treatment 130, 151 amelioration factor 81 amygdala 162 analytical capacity 157 anger 56 anger and anger regulation in daily lives 87 anger and sadness pain amplification 87 anger, sadness and pain 87 annulment of repression 50 annulments 151 ANS 78, 83, 85, 162, 164 ANS during sleep 145 ANS integrative neural networks 97 antidepressants 132

anti nociceptive role of appropriate autonomic arousal 163 anxiety 56, 144 anxiety-proneness 12 ask for and receive help 151 assertiveness training 95 assimilating cognitions 94 associating with the body 91 “as though healthy” 149 asymmetry between physical and psychological health 75 attacked 21 attenuated psychological self regulation 75 augment the stress response 85 authority of the allied health care professionals 94 autobiographical memory the sense of self 89 automatic avoidance 149 automatic dissociative response 116 autonomic nervous system reactivity 78 autonomic performance and sleep 83 autonomy 23 auxiliary ego 48 avoidance 24, 48, 76, 105 avoidance group of defenses 89 avoidance measures in mood regulation 116 avoidant behaviors 88 avoidant processing of emotions 145 avoidant stance 88 avoidant strategies 155 avoid mental pain 33 axial coding 124 Bangladesh 3 baroreflex and efficient descending pain inhibition 81 baroreflexes could also be “exercised” 96 baroreflexin rectifying blood pressure 81 better health status 82 biofeedback trial 96 biomedical 103 “blindness” to the subjective life 108 blood pressure 145 blood pressure reactivity 78 blunted adaptive resources 159

178 

 Index

blunted inhibition of pain 158 blunted physiological stress reactivity and the intensified pain 146 blunted reactivity 77, 78 blunted response of the descending pain regulatory system of the brain 158 boundaries 111 brain regions that are related to goal directed behavior 158 Brazil 3 brief self directed program 95, 148 Brief Stress Scale 77 bullying at work 66 burdening psychological pain 21 burnout 163 Canada 3, 5 “candle in the wind”-pattern 21 catchy employment momentarily can alleviate mental load 159 categories 15, 105 cease of overexertion 131, 153 central sensitization 80, 97, 163 challenge of fibromyalgia 129 challenged by being too active 111 change in cognitive functioning 72 changing the conditions 23 child 126 child labor 19 childhood 18, 74 childhood conditions 134 childhood experiences 26 children 11 children from families where the mother was physically abused 161 children made an effort ‘not to think’ 161 Chronbach’s alpha 37, 154 chronic or mounting stress 57 chronic stress 116 chronic wide spread pain 6 clinical examination 2 clinical psychologist 14 closeness to work tasks 108 CNS 78, 79 co-morbidity with other diseases 60 co-occurrence of fibromyalgia with IBS 80 co-workers were perceived as understanding 81 coded data patterns 27 coding around the axis 16 cognitive behavioral tradition 94

cognitive difficulties 12, 76, 103, 130, 131 cognitive disintegration 27, 74 cognitive emotional response pattern 156 cognitive performance and cognitive style 162 cognitive-emotional framework 156 cognitive-emotional processes 143 cognitively more robust and “adapting” subgroups 157 coherence in psychological functioning 138 coherent functioning 132 cold temperature 112 cold water immersions 80 comings and goings of pain 113 compass of the affect life 20 compensating functions 166 compensating strategies 66, 74, 76 complementary alternative medicine 102 completed process of crisis 149 completion of the process of crisis 150 complicated life situation 103 compulsive repetition 157 concentration 1, 11 conditions of a gap in pain 114 continuation of mental strain 102 control is a general desire in humans 160 controlled 19 control over pain 88 controlling perception 108 control through solid education 160 cope with the pain 92 coping strategies 28 core category 16, 105 core concept 124 corrective emotional experience 94 cortical areas being involved in the regulation of blood pressure 159 cortisol 83 cortisol level and the clinical pain 78 cortisol response 163 counseling 72, 93 counter-charging negative affect 108 create a break from pain 2 creativity 24 crisis 65 Crisis intervention 116 cumulative load attenuating the appropriate adjustment of stress regulation 163 cumulative load from stressors 55, 92

Index 

current inflammatory activity, in women with a history of child abuse 164 current life-crisis 50 cytokines 164 dammed up with negative emotions 127 daytime hypersomnolence 84 decision-making and brain-functioning 156 decoupled response of the stress system 145, 158 decrease in load from stress 152 decrease in mental load 116, 136 decrease in mental strain 131 decrease in pain 95 decrease in parasympathetic regulation 146 decreased vulnerability regarding distress 115 delayed recovery 78 demands from the family members 82 denial 128 Denmark 4 dependence in relationships 27 depression 56, 144 deprivation of sleep 28, 75, 129 deteriorated conditions of life 75 developing countries 1 developmental challenges 18 development of a pain free state from generalized pain 60 diagnosed children 11 diagnosis of fibromyalgia 131 diagnostic criteria 2 different course in women than in men 55 difficulties concerning crisis and mourning 165 difficulties in problem-solving 22 difficulties sleeping 60 diminished emotional support 143 disabled 3 Discriminant Analysis 37 “disorders of extreme stress not otherwise listed” (DESNOS) 154 disruption in consciousness 25 dissociation affects both memory skills and perception 89 dissociation and symptom amplification 49 dissociation of the self-image from the disease stricken body 115 dissociation 20, 25, 33, 34, 50, 57, 76, 89, 108, 113 dissociative ability 49

 179

dissociative functioning 56, 127 distinct aspects of mental life kept apart 151 distortion of early experiences 30 distraction decreased arousal from experimental stress 114 distraction 49 distress from crisis 113 distress from crisis and avoidance 109 disturbance of sleep 90 disturbance of the of the sleep stages 3 and 4 61 disturbed sleep 161 domestic violence 18 “dosed exercises” 94 “dose” of problems with sleep and the risk of developing fibromyalgia 61 doubled amplification in pro-inflammatory cytokine response to daily stressors 165 ‘doubled’ sensitivity of the brain to experimental pain 102 drug use 29 dysautonomia 33 dysregulated stress-response 12 Dysregulation of physiological responses 158 Early life adverse experiences 162 easily invaded 127 Eastern medicine 130 economic resources 130, 151 education 3 educative sessions 51 effect from medical care on major symptoms 102 effect from training on clinical pain 84 effective in increase in fibromyalgia pain 76 effects from early trauma 155 effects from long-lasting and acute stress on cognition 156 efficacious defences 133 elevated levels of pro-inflammatory activity 164 elevated physiological arousals 87 emergency coping strategies 153 emotion and stress regulating conditions 150 emotional avoidance 94 emotional awareness exercises 95 emotional disclosure on stressful experiences 95 emotional neglect and abuse 57 emotional processing 86 emotional stress 111 emotion-based decision-making 155 emphasis of own strength 35 empower 2

180 

 Index

empowerment 103 environmental load 166 environmentally ameliorating factors 148 environmentally offered distraction 150 environmentally offered effortless regulation 150 establishment of diagnosis 136 etiological factors in fibromyalgia 164 etiology 11 Europe 5 everyday hassles 102 excluded from working life 160 exercise 84, 114, 166 exercise intervention could optimize pain management 85 exercise testing 93 “exercise-wise” balanced state of the ANS 116 exhausting level of activity 75 exhaustion 50, 66, 129, 144 existential threat 128 experiencing and expressing emotions 94 explanatory power regarding both the development and maintenance of fibromyalgia 116 explored the boundaries of their bodies 91 exposure 17, 19 exposure from psychosocial stress 71 exposure to stress hormones 58 extensive program 92 facilitate emotional processing 95 facilitating processes of change 93 facilitating the processes of crisis and despair 166 failure to change course 115 family history of chronic pain 4 fatigue 1, 6, 11, 153 feelings of captivity 129 female 28 female nervous system 116 female prevalence 6 fever 50 “fibrofog” 89 fibromyalgia and stress 77 fibromyalgia development process 49 fibromyalgia in children 1 fibromyalgia pain becomes enhanced from mental load 145 Finnish 4 flexible adjustment to the stress task 158 fluctuations of the level of the symptoms 2

fragile mental functioning 50 frustration or crisis 144 Gaps in fibromyalgia pain 1, 92, 130, 135, 136, 149, 151 gap in pain seemed to require relief from psychological pain 114 gaps in pain – physical conditions 102, 104 general population 5 generalized pain returned 72 genetic predisposition 55 genetic underpinning 55 global occurrence 2 good relationship with a good doctor 131, 152 gradually feeling better 72 grief and thereby reaching a turning point 91 grieving process 91 Gross National Product 2 grounded theory 13, 15, 30, 71, 105, 122, 137 Group treatment 92 habit action 159 habitual avoidance 107, 147 habitual dissociation 49 habitual high speed activity 113 habitual use of avoidance 113 hand motor skills 1 hand motor difficulties 73 handling the inner life 20 health also depends on those close by 160 Health jeopardizing ways 113 health-promoting work style 132 heart rate 77, 145 heightened intensity of pain 73 heightened level of life stress 77 heightened level of mental load 71, 75, 86 heightened level of negative affect 155 heightened level of stress 145, 165 heightened susceptibility to somatic disturbance 87 help 130, 136 helpless role model 19, 126 helplessness 18, 24, 65, 144 high dissociative ability and pain 90 high level of control over pain 88 high levels of daily stress 122 high speed activity 48 higher cortisol level 80 higher education 81 higher experience of being under stress 77

Index 

higher income 81 higher level of pain and fatigue 89 higher self-efficacy 135 HIV infection 29 hobby 111 HPA 28, 85, 121, 162 HRV bio feedback 97 HRV 83, 96 hyperactivity of the sympathetic branch 83 hyperalgesic response 78 hypertension 79 hypo- and hyper- reactivity of the sympathetic nervous system 102 hypocortisolemia 121 hypomanic strategies 128 hyporeactive sympathetic system 79 hypotension 79 hypothesis 16 I Myself Scale (IMS) 33 IBS 80 identity 22, 127 identify avoided experiences 95 identify with each other 93 ill paced activity 102 immigrant 4 immobility 128, 144 immune functioning markers 83, 85 impact in the psychosocial dimension 12 Impaired cognitive functioning 153 impaired self-protection 33 impaired self-reference 33 impaired self-regulation 49 impaired sleep 11 impatience or aggressions 73 Implications for treatment 136 improved family situation 153 improvement in pain 97 in vivo and in vitro codes 124 inability to activate pain inhibitory mechanisms 158 inability to handle stress 28 inability to mourn 127 inability to relax all examined muscles 158 incapacity of parenthood 126 incoherence 108, 113 incoherent psychological functioning 125, 127 income 3 increase in mental load 65, 128 increase in negative affect 86

 181

increase in the clinical pain from stress 77 increased affective load 65 increased loneliness 66 increasingly vulnerable health 56 India 3 individual psychotherapeutic treatment 166 individualized optimal rate of breathing 96 individualized treatments 93 Indonesia 5 induced mental load 77 induction of negative affect 86 inductive procedures 29 inductively analyzed 71 infection 50, 55 inflammatory marker protein (CRP) 164 influence from sleep on the severity of the condition 157 informants accepted negative affect 149 inhibit the expression of anger meant a higher level of pain 87 inhibiting carry-over effect 81 initiation, maintenance and termination of pauses in fibromyalgia pain 107 insensitivity to punishment 156 insomnia 144 insufficient processing of emotions 87 insufficient psychological means 49 insufficiently supported 18, 20 intense activity 33 intense motoric activity 72 interesting job 130, 152 intermediate physiological response 163 interpersonal affect regulation 95 interpersonal relationships 155 interpersonal sensitivity 56 interpersonal vulnerability 21 interpretative 29 interruption of regular exercise 143 intertwined response to environmental threats 162 invaded by the needs and demands of others 48 inverted relationship to the development of pain 80 ironic process 88 isolated 18 keeping a slow pace 91 keeping distress out of sight 105, 113

182 

 Index

laboratory stress 77, 156 lack of decision latitude 147 lack of emotional support 18, 66 lack of goal directed strategies 113 lack of self monitoring 149 learning to say no 133 leaving the everyday environment behind 114 legitimate health needs 94 length of programs 148 less access to positive emotions 86 less efficient sleep 84 less fibromyalgia pain in a context of being in touch with and also expressing an emotion 87 less flexible adaptive capacity of the brain 159 less frequent pain 92 level of tenderness 88 levels of adrenaline 164 lifelong victimization 58 lifting, carrying 82 lignocaine 33 limited social life 75 line by line coding 124 listened to their bodies 91 living very close to other people 107 localized pain 58, 66, 128, 163 localized pain prior to the onset of fibromyalgia 58 localized pain “spreading” 60 loneliness 19 loneliness as a child 20 lonely child 126 long-lasting condition 11 long lasting conditions 165 long term process towards recovery 152 losing the unplanned gaps in pain 105 loss of a gap 114 loss of a sense of control 71 loss of full health 144 low decision latitude at work 58 low grade inflammation in the population 165 low grade stress 79 low vagal tone 83 lower baseline cortisol level 78, 146 lowered level of positive affect 155 lower pressure pain thresholds 147 lower proportion of the “deep sleep” stages 3 and 4 84 lower social support 3 lowering of the nociceptive thresholds 158

maintained heightened level of load 153 maintained high level of load 129 maintained “relevant” level of symptoms 157 maintenance of fibromyalgia 153, 155 mastering attention 21 mastering strategies 129, 130, 151 measures of depression 97 mechanisms of pain 33 medium effect on pain 84 memory 1 memory and attention 155 Memos 16 mending 24 menopause 132 mental exertions 81 mental load 11, 18 mentally invaded 19 middle or upper middle class 136 “mind map” control 160 minimization of negative emotions 94 Minnesota Multiphasic Psychological Inventory (MMPI) 12 monitoring yourself 109 mood bias 30 more pain at the end of the day 87 motoric self-representation 24, 108 mounting health problems 151 mourn 21 mourning processes 116 muscular contractions 33 muscular reactivity 78 muscular tension 77, 145 musculoskeletal pain 4, 5 natural expressions of the personality 108 naturalistic data pattern theory 103, 124 neck and shoulder pain 79 need for association 115 needs and worries of others 102 needs of others 21 negative emotions of fear or sadness 20 negative affects 26 Negative emotions relate to ANS arousal 146 negative life events 67 negative self-evaluation 160 neglecting health needs 108 neuroendocrinologic abnormalities 79 neuroplastic improvement in baroreflex function did not happen over 10 weeks in patients with fibromyalgia 97

Index 

new way of managing life 91 new wholeness of self 135 nociceptive barrage 163 noise 148 “non-dissociated” recognition of the disease 116 non dissociative process 115 non psychological nature of fibromyalgia pain 78 non-REM sleep 61 Nordic countries 4 normality 23 not accepting fibromyalgia 113 not having been mothered 126 Not planning a pain gap 110 not planning gaps in pain 105 object-relations 13 obsessive-compulsive ideation 56 of fibromyalgia pain 78 on parole 125 on parole from symptoms 132 one-sided emphasis on positive affect 108 onset 1 open coding 15 otherwise relaxed states 110 outcome of rehabilitation 122 over active 49, 113 over-active pattern 90 over-exerted 21 over identification 24, 49 over stimulation 65 Overstrained as a child 18 overwhelmed by stress 73 pacing of activity 50, 113, 132 pain and dullness 75 pain and mental load 146 “pain as a guide method” 147 “pain-as-a-guide strategy” 91 pain behaviors 92, 135 pain disappearing during holidays 110 pain-free pauses 34 pain-free state 110 pain intensity of local body areas 86 pain is interrupted by gaps 101 pain preventing self care 150 “pain rather than pulse” 145 pain-rating 13 pain suppression 88

 183

pain would disappear after a few days 92 Pakistan 3, 4 paradoxical recollection 109 parasympathetic influx 83 patient organizations 104 paying attention to the body 91 pedagogical approach 94 perceived autonomy and perceived control 160 perceived control 147 perceptual defenses 49, 50 perceptual defense style 34 persistence 76, 153 persistence during ill health 165 personal growth 116, 132, 135 personality profiles 76 pharmaceuticals 93 pharmacological provocation 78 physical abuse 57 physical disability 57 physical exercise 164 physical load 18 physiological functioning 166 physiological stress response patterns 77 platform of diagnosis from a medical doctor 153 poor coping skills during the stage of fibromyalgia 154 poor sleep 5 poor sleep as aggravating 81 positive affect 114 positive affect and lowered level of pain 114 positive emotions 155 post traumatic stress disorder 34, 71 post treatment evaluation 93 powerful role models 126 pre-school girls 28 Preconceptions 29 preconceptions of the interviewer 105 predict the level of pain one year later 84 prefrontal cortex 162 premature strength 126 Premorbid hyperactivity 50 premorbid level of activity 59 premorbid overactivity 59 preserve and lengthen the breaks from pain 115 prevalence 3, 4 prevalence of the syndrome increases with age 59 prevalence rate 11 prevention and rehabilitation 136 problem-solving atmosphere 130

184 

 Index

problems sleeping and subsequent development of fibromyalgia 60 processing emotions 146 process of crisis 113 process of pronounced personal growth 151 process shaper 113 professional success 130 prognosis 11 pro-inflammatory activity in the central nervous system 158 proportions of men versus women 3 protection 23 protective role of exercise 85 protracted insomnia 67, 71 psychobiological 103 Psychological and somatic load from trauma 56 psychological autonomy 20 psychological distress 5 psychological evaluation 93, 166 psychological exploration 136 psychological functioning 11 psychological functioning prior to onset of fibromyalgia 48 psychological functions from strain trauma 166 psychological pain were not avoided 113 psychological processes and processing 166 psychologically invaded 20 psychometric examination 92 psychometrical data 75 psychometric instrument 33, 47, 56 psychophysics 13 psychophysiological features 78 psychophysiological interventions 96 psychosocial process 97 psychosomatic mechanisms 13 psychosomatic process 74 psychotherapy 152 PTSD 56, 85, 90, 115, 122, 154 PTSD and that the inflammatory activity 164 PTSD diagnosis are found rarely in a pure form 161 punishment of “flare up of pain” 156 purposeful behavior 147 qualitative method 15, 29 qualitative methodology 13 quality of life 75 questionnaire on action proneness 59 quick relief 91 Ratings of sleep 84

reactive to new stressors 73 rebound effect 50 rebound process 116 rebound process where the suppressed material is involuntarily monitored 88 reciprocal process 27 recovered from fibromyalgia 91 recovery 1, 135, 151 recovery from the increase in pain 80 recovery from trauma 96 recovery meant self care 103 redirection of perception 26 reduced heart rate response to stress 79 reduction in mental strain 71 reduction of cognitive functions 27, 71, 74 refrained from pain medication 91 regulating affect 155 relationships between categories 105 relaxing, alternate exercise and rest 91 relentless activity 24, 155 relentless muscle tone 12 relevant low level of strain 132 relief from social pressure or humiliation 131 REM sleep 61 remission of symptoms 121, 134 repeated emotional intrusions 87 repetitive work 58 repetitive or static manual tasks 82 repetitive work and static manual tasks 159 repression 21, 26, 33, 49, 50 repressor-coping 34 research process 101 resourcefulness 127 response of the sympathetic nervous system 12 responsibilities 20 rest was enough to relive pain 91 retirement 131 rheumatological diseases 3 rights to say no 21 rigid annulment 128 robust cognitive performance relates to positive affect 160 role models 19 role of the significant others 94 Sampling 16 SASB 75 score profiles 38 seek and accept help 130

Index 

seek external stimulation 21 Seeking information 130 seeming contraditions in psychological functioning 89 self awareness and self esteem 152 self care being efficacious in order to decrease the frequency of pain 92 self-care 23, 136 self definition 22, 23 self efficacy 12 self forcing ways 149 self forgetful 76 self loading 18, 23, 48, 108, 143 self-comfort 21, 50 self-destructive 108 self-destructiveness 23, 149 self-forgetfulness 153 self-neglect 48 self-realisation 24 self-regulation through others 66 self-regulation 11, 27, 34, 48, 65, 122, 134 sense of power or control 96 sensitivity to reward 156 serious trauma 94 serotonin 78 severity of a psychosocial trauma 135 SF-36 75 shapers 27, 113 sharing responsibilities 91 sharp increase in the load from stress 143 showing very little embarrassment 108 “shut off completely” 21 signaling functions of the life 20 skilled occupation 92 skin conductance reactivity 78 Sleep 83 sleeper effect 95, 147 sleepiness and fatigue 71 slow down their pace 92 sobriety while exercising 132 social and economic conditions 2 social and psychological support 91 social background 82 social conditions 148 social environment of home 94 social support 93, 148 sociological research 161 somatic alterations 27 somatic anxiety 12 somatic symptoms other than pain 11

 185

somatic symptoms 71, 76 soothe stress and ameliorates pain 146 Spain 3 stabilisation of psychological functioning 136 stigmatised 129 stimulation 21 “stop in time” 91 stop the current activity in order to prevent deterioration 91 “strain meaning pain” 152 strain trauma 162 strenuous psychological process 78 stress 11, 82 stress along the lifespan 56 stress and immune system dysregulation 143 stress expressed as regional pain 91 stress fosters clinical pain 166 stressful and repetitive office work 79 stressful working conditions 148 stress induced analgesia 79, 80 stress is a major factor in development of localized pain 163 stress regulatory systems being de-coupled 79 stress response to different kinds of strain 158 Structural Analysis of Social Behavior (SASB) 36 structural interview 13 structure of defence 13 subgroup 113, 115 subgroup of informants had adapted to impairment 115 Subgroups of patients 12 subgroups of patients with fibromyalgia 96 subgroups with a more successful self regulation 157 substance P 78 substantial decrease in pain 147 substantive codes 15 successful rehabilitation 167 successful self-regulation 122, 151 support 130, 152 support and educational group 166 support counteracting helplessness 129 support group session 92 support groups 166 suppression 25, 50 suppression and relapse 116 suppression in severity of symptoms in fibromyalgia 88

186 

 Index

suppression means arousal 147 suppression of thinking 35 surgery 50 “suspicion” meant additional strain 153 symbolization 12 sympathetic blockade 33 sympathetic hyperactivity during the night 83 sympathetic influx 83 symtoms of fibromyalgia 11 taking care of oneself 91 talent 130 teachers or mentors for others 152 Temperament and Character Inventory (TCI) 153 temporary boundaries are established from being “abroad” 114 tend and befriend 28 tender point count 5 tender point sites 2 Thailand 5 theory-generating 34 threatening inner world 24 tiredness and pain 20 total recovery from symptoms 72 to use their clinical pain as a guide 91 transference of the results 137 transform 34 transformation 135 transformation and improved coping 113 Transformation as rehabilitation 116 Transformation as remedy 135 ‘transformation’ into acceptance 135 “transformation into a more authentic self” 151 transformation of psychological functioning 133 transformed stress regulatory functioning 145 transitional external conditions 144 traumatic experiences 122 traumatic material 50 traumatization from socioeconomic disadvantage 162 Traumatization in women 154 traumatized mother 126 treatment 165, 166 treatment sessions 95 trial-by-trial action pattern 156 triggers in the processes of disease 55 truer and more coherent self 165 tuning in 49

‘Tuning in’ into activity 151 tuning into joyous activities 111 unaided child 18 unbalance between negative and positive emotion 87 underlying mechanisms of the disease 96 understanding health needs 127 undiagnosed 129 undo the existential threat 144 unfamiliar with negative affect/stimuli/ reactions 107 United States 3, 4 unpaced activity 130 unpaid family work 82 unprotected self 11, 27, 36, 49, 71, 74, 154 unresolved trauma 147 unshielded 18 unsupported mentally 18 upper middle class 153 urge to be over active 90 variability of the heart rate 83 verbal or physical abuse 126 vicious circle 27, 152 victimization 57 victimization histories 94 VIP-values 39 vulnerable psychological functioning 56 vulnearable when suffering a major loss 89 vulnerability regarding emotional pain 107 vulnerable regarding positive affect 146 vulnerability regarding positive emotions 86 warm temperature 111, 114 warning signs as a subtle increase in pain 91 ways of living 138 weak boundaries 48 well educated 91 well-balanced exercise 111 well-paced exercise 149 white collar workers 4 wide psychological breakdown of adaptation 161 wide spread pain 5 wideness of intervention 148 wider process of change 152 wider psychological consequences of trauma 161 “wide” rehabilitation program 92

Index 

wish to avoid or minimize negative emotional experiences 87 women with rheumatoid arthritis 82 work outside of the home 2 working conditions 81

 187

Working life 159 working overtime 82 working through traumatic experiences 116 workplace bullying 58 written emotional disclosure 95