G.P.7.05 Self reported fatigue and pain compared to physical abilities in patients with facioscapulohumeral muscular dystrophy and to their healthy relatives

Fatigue and pain in muscles and joints are frequently reported by patients with facioscapulohumeral muscular dystrophy (FSHD) attending Rehabiliterings Center for Muskelsvind (RCfM). The purpose of this study was to examine whether this was a general feature in our patients with FSHD, and whether these symptoms were more severe compared to those of their healthy relatives and/or related to degrees of physical disability. A questionnaire on localisation and severity of pain, severity of fatigue and physical disability was constructed. The questionnaire was distributed to all patients with FSHD (n = 92) registered with the RCfM and a copy of the questions on localisation and severity of pain and fatigue was enclosed for a selection of healthy relatives (n = 32). In all 69 patients (75%) (f , 40; m, 29) and 27 healthy relatives (f, 19; m, 8) responded. Mean age of the patients was 47 (range 9–84) and mean age of the relatives was 41 (range 22–65). 85% of the patients could walk indoors, 47% could also walk safely ourdoors. 30% could get up from the ground by themselves. 20% could run or climb stairs without using the rails. 81% could turn themselves in bed. Severity of pain was significantly higher among the patients compared to their healthy relatives. Patients most often reported pain in shoulders, whereas the healthy relatives most often had back pains. Self reported fatigue was significantly higher among the patients compared to their relatives. There was no correlation between degrees of physical ability and pain or fatigue, indicating that perception of fatigue or pain was not related to degrees of disability.