Objective: To examine the nature and scope of pain in persons with neuromuscular disorder (NMD).
Design: Survey study.
Setting: University-based rehabilitation research programs.
Participants: Adults with NMD (N=193).
Interventions: Not applicable.
Main outcome measures: Pain presence or absence, pain severity, pain quality (Neuropathic Pain Scale), pain interference (Brief Pain Inventory), pain site, quality of life (Medical Outcomes Study 36-Item Short-Form Health Survey [SF-36]), and pain treatment.
Results: Seventy-three percent of the sample reported pain, with 27% of these reporting that this pain was severe (> or =7 on a 0-10 scale), on average. "Deep," "tiring," "sharp," and "dull" were the words used most frequently to describe NMD pain. Patients with amyotrophic lateral sclerosis and myotonic muscular dystrophies reported the greatest pain interference, and patients with Charcot-Marie-Tooth the least, among all NMD diagnoses. The most frequent pain site, overall, was back (49%), followed by leg (47%), shoulder (43%), neck (40%), buttock and hip(s) (37%), feet (36%), arm(s) (36%), and hand(s) (35%). The study participants reported significantly greater dysfunction than subjects in the SF-36 normative sample (persons without health problems) on a number of the SF-36 scales. However, we found no significant differences between the study participants and the US norms on the SF-36 role-emotional or mental health scales. A number of pain treatments were used by the study sample, but no treatment appeared to be effective for all participants, and some of the treatments reported as most effective (eg, chiropractic care) were used by very few participants.
Conclusions: Pain is a common problem among patients with NMDs. There are many similarities, but also some important differences, between NMD diagnostic groups on the nature and scope of pain and its impact. More research is needed to identify and test effective treatments for NMD-related pain.