Background: Chronic pain severely impacts quality of life, yet pain interference and management are not well characterized in muscular dystrophy (MD) populations. We describe self-reported pain experiences and management among adults diagnosed with one of three MDs: facioscapulohumeral (FSHD), limb-girdle (LGMD), or myotonic (DM).
Objectives: Adults with MD identified through the multi-site Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) completed a survey during 2023-2024. Survey items included pain occurrence and management (past 30 days), and pain intensity and interference (past 7 days) as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS) Pain Intensity and Pain Interference short forms. PROMIS intensity and interference scores were converted to t-scores and categorized as none (t-score<55), mild (t-score: 55-<60), moderate (t-score: 60-70) and severe (t-score: >70) among those with complete responses.
Results: Among 576 adults, most (70.1%) reported pain within the past 30 days with an average of 21 days (SD=10.2) per month. For pain intensity (n=409), 41.3% of adults were scored as moderate-to-severe. For interference with daily activities (n=382), 53.2% were scored as moderate-to-severe. The most frequent management was non-prescription pain medications (69.0%); opioids were used by few (14.2%). Non-pharmacologic approaches were common among those with FSHD (46.7%) and LGMD (43.9%) but less so for those with DM (26.5%). For non-prescription pain medications users, the majority reported that pain was completely or adequately controlled (58.7%). Adequacy of pain control was similar across MD subtypes.
Conclusions: Chronic pain was common among adults with FSHD, LGMD and DM surveyed by MD STARnet. Pain was observed to interfere with daily activities for over one-half of adults and most required medication to manage. It is important for clinicians to be aware of chronic pain as a component of these MDs and discuss adequacy of management to improve daily functioning and quality of life.