INTRODUCTION/AIMS: Pain is a recognized symptom of muscular dystrophy (MD), but little is known about prescription pain medications in this population. We describe pain experiences and pain medications prescribed for individuals with selected MDs using population-based surveillance data collected by the Muscular Dystrophy Surveillance, Tracking, and Research Network.

METHODS

Pain and prescription data were abstracted from medical records for 1282 individuals with Duchenne and Becker (DBMD) MD during 2000-2015 and congenital (CMD), distal (DD), Emery-Dreifuss (EDMD), facioscapulohumeral (FSHD), limb-girdle (LGMD), and myotonic (DM) MDs during 2008-2016. Percentages of individuals prescribed pain medications for ≥ 6 weeks during follow-up were estimated. Logistic regression was used to examine associations with selected demographic and clinical characteristics.

RESULTS

Moderate pain was observed among 34% of all people with available pain scores and varied by MD type (13%-53%). Pain medications were prescribed for 31.1%-40.2% of people 20 years and older, but less frequently (< 15%) among people less than 20 years old. Among people prescribed pain medications, the first medication was typically a non-opioid (57%), but both non-opioid and opioid medication classes were prescribed during follow-up (34%). Pain medications were typically prescribed for longer than 1 year (> 85%). Impaired mobility had the strongest association with prescription pain medication.

DISCUSSION

The prescription of pain medication is common for people with symptomatic MD. Most people were prescribed only non-opioids. These data highlight pain management as a frequent component of MD care. Understanding modifiable factors associated with MD-related pain and effective interventions may help improve care.