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Purpose: To investigate experiences and reflections on challenges in everyday life of people living with limb-girdle muscular dystrophy (LGMD) and chronic pain in order to improve rehabilitation services., Materials and Methods: The design for this study was qualitative using the Interpretive Description methodology and the salutogenic theory of Sense of Coherence as the theoretical framework. Four semi-structured focus group interviews were conducted with 19 adults with LGMD from April to May 2021. The interviews were conducted online due to COVID-19., Results: Living with chronic pain and LGMD affected everyday life in terms of the participants' overall Sense of Coherence. Beneficial or unfavorable coping strategies were identified within four interrelated categorical themes: pain management, normality comprehension, affected emotional sentiment and altered identity ., Conclusion: Healthcare professionals should acknowledge possible chronic pain secondary to LGMD. Chronic pain appears to be a prevalent problem in people with LGMD with negative impact on everyday life, yet patients with LGMD did not receive sufficient information and necessary tools from health professionals to cope with chronic pain. Thus, adequate pain management appeared to be a difficult and self-taught process. Educating health professionals on how to support patients with LGMD and chronic pain is needed.IMPLICATIONS FOR REHABILITATIONHealth professionals should acknowledge and address the possibility of chronic pain secondary to limb-girdle muscular dystrophy (LGMD) and educate patients in pain management.Physiotherapy, energy management and engagement in meaningful activities may help patients gain some control of pain and limit the consequences of pain on everyday life.Supporting patients to accept pain and to shift focus towards their current capabilities may potentially improve pain management.Educating health professionals on how to support patients with LGMD and chronic pain is needed.

Purpose: The aim was to investigate the prevalence, characteristics, predictors, and consequences of chronic pain in a national cohort of patients with limb-girdle muscular dystrophy (LGMD)., Materials and Methods: Questionnaires were sent to all Danish LGMD patients (≥18 years of age) registered with the National Rehabilitation Center for Neuromuscular Diseases., Results: Of 209 patients, 121 responded. 44.7% of the patients experienced persistent (daily or constant) chronic pain lasting more than 3 months. 21.0% of patients experienced chronic pain that was not daily. Most pain patients experienced three or more pain problems, primarily in the lower back, neck, shoulders, hips, and legs. Symptoms suggestive of neuropathic pain were sometimes present. Patients with persistent chronic pain reported moderate pain interference with daily activities, greater psychological distress, and lower quality of life compared to patients without pain but did not differ regarding physical functioning. Sex, age, LGMD duration, LGMD type, mechanical ventilation use, mobility, arm function, or performance on activities of daily living did not predict chronic pain., Conclusion: Chronic pain is common in patients with LGMD. Chronic pain should be considered an important component of LGMD and addressed in the clinic and rehabilitation setting from a biopsychosocial perspective.Implication for rehabilitationChronic pain is highly prevalent in patients with limb-girdle muscular dystrophy.Health professionals need to systematically ask patients about pain and the influence of pain on everyday life irrespective of LGMD-duration and extent of muscle wastage.Chronic pain and psychological distress need to be addressed in the clinic and rehabilitation setting as an additional disabling component of LGMD and this should be done within a biopsychosocial framework.