Fibromyalgia and self-regulatory patterns : development, maintenance or recovery in women

Sammanfattning: Aims: The overall aim of this thesis was to elucidate psychological processes and development, maintenance or recovery related to fibromyalgia based on in depth interviews. In a next step women with fibromyalgia, women without long-lasting pain and women with long-lasting pain were compared using psychometric instruments selected or developed based on qualitative results. Methods: Twenty-one women with fibromyalgia and 8 women recovered were interviewed. Their narrations were analysed using Grounded Theory. Tentative theory was built. The I Myself Scale (IMS) was constructed to mirror self-regulation prior to onset of symptoms and complemented with an instrument on current self-regulation: Structural Analysis of Social Behaviour (SASB) and SF-36 mirroring health related quality of life, regarding the two pain groups. The groups were compared using analysis of variance, principal components analysis paired with discriminant analysis and profile analysis. Results: Analyses of the interviews resulted in core concepts of an “unprotected self” (current fibromyalgia) or a “strong but not enough to be weak” self (recovery). Data patterns indicated that the women as children were unprotected in relation to stimuli and affects. Relationships with the parents were characterised by strain and low levels of support. The recovery group had as children simultaneously been able to develop obvious competence and capability to receive help. Psychological vulnerability was in adult life compensated for through pronounced helpfulness and dissociation/repression including intense activity. An increase in mental load such as localised pain or psychosocial crisis preceded onset of fibromyalgia accompanied by impaired cognitive functioning. The state of fibromyalgia meant maintained high levels of mental load such as difficulties of the selfstructures, impaired cognitive functioning and somatic symptoms. The recovery group experienced substantial social support and often used mastering strategies to ease symptoms. A decrease in strain as improved life conditions and cease of overexertion preceded recovery. Health was thereafter maintained through careful management as seeking low levels of strain and pacing of activity. Recovery ‘on parole’ also meant personal growth and use of efficacious defences. Psychometrical testing confirmed qualitative data patterns of self-regulation connected to fibromyalgia. Impaired selfreference/ understanding of health needs and others not being asked for help and advice was reported before onset of symptoms. Dissociation or repression including intense activity and self-loading were also employed. SASB and SF-36 indicated that women with fibromyalgia experienced higher levels of mental “load” than the other pain group. Conclusion: Qualitative data indicated that life prior to onset of fibromyalgia and current fibromyalgia held qualities of impaired self-regulation in relation to mental and physical load. The state of recovery relied on improved self-regulation allowed by conditions of life. Quantitative data patterns confirmed qualitative results on impaired self-protection before onset of fibromyalgia and a specifically high level of mental load during the state of fibromyalgia. Psychological disregulation is discussed and hypothesised to cause but also later in the process parallel alterations in somatic homeostatic functions. Recovery could mean that biological regulation regarding strain is replaced with more of “psycho-social” regulation as careful pacing of work. Implications for treatment are suggested.