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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). Questionnaires were sent to all Danish LGMD patients (≥18 years of age) registered with the National Rehabilitation Center for Neuromuscular Diseases. 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. 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. Chronic 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.

Prevalence of chronic pain in a national cohort of patients with limb-girdle muscular dystrophy: a cross-sectional study