Chronic Pain in Neuromuscular Disease

There are a growing number of studies indicating that chronic pain is a common symptom for the majority of people with various neuromuscular disorders (NMDs). Studies of adult persons with NMDs—including the facioscapulohumeral (FSHD), myotonic (MMD), and limb girdle (LGMD) forms of muscular dystrophy; spinal muscular atrophies (SMA); Charcot-Marie-Tooth (CMT) disease; and post-polio syndrome (PPS)—have shown reported rates of chronic pain ranging from 70% to 96%. Despite the negative impact of chronic pain on quality of life for NMD patients, there is almost no information on the relationship of chronic pain and burden of disease in this patient population. Future directions will be discussed in this lecture, including the need for studies addressing the degree to which chronic pain contributes to disease burden and how psychosocial factors causally influence pain. Better measurement tools for chronic pain, quality of life, and burden of disease are needed and could be utilized via NMD registries for these studies.

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