No data were available on demographic and clinical characteristics of members of fibromyalgia syndrome (FMS) self-help groups in Germany.The study was carried out from November 2010 to April 2011. A set of questionnaires was distributed by the German League Against Rheumatism and the German Fibromyalgia Association to members and to all consecutive FMS patients at nine clinical centres of different levels of care. The set included a self-developed questionnaire on demographic and medical data and on previously and currently used therapies, the patient health questionnaire (PHQ 4) and the fibromyalgia survey questionnaire.Members of FMS self-help groups (N = 1,014) were older and reported a longer duration of chronic widespread pain, less anxiety and depression and a more frequent current use of aerobic exercise, relaxation training and complementary alternative medication than participants not affiliated with FMS self-help groups (N = 630).Membership in FMS self-help groups was associated with less psychological distress and a more frequent use of active self-management strategies.
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