Pain is not an uncommon symptom or consequence of living with NMD.
Many patients with neuromuscular disease have chronic pain, to some degree. Unsurprisingly, neuropathic diseases like Charcot Marie Tooth would rank high in pain intensity, given the pathogenesis of the disease, particularly the demyelinating forms. However, two of the most common forms of muscular dystrophy, myotonic type 1 (DM1), and facioscapulohumeral (FSHD), are also high on the list of painful NMDs.
Pain is not limited and must not be underestimated in other NMD. Pain includes symptoms such as cramps which are quite common in Becker muscular dystrophy.
A leaflet published by the SMN details: different types of pain / chronic pain and ways in which people with NMD can manage pain including the importance of a details assessment of your pain. In severe and persistently painful conditions referral to a pain clinic maybe beneficial.
Below are two articles which may be of interest to your understanding:
- Chronic Pain in Neuromuscular Disease 2012 Jordi Miro
- Prevalence of pain in LGMD R9 – 2021 Mark Richardson et al
Cramps in BMD:
Management of pain / cramp in this group is important and boys can benefit from warm baths, massage and stretches. Some boys find Lycra shorts or leggings beneficial to reduce cramping. Refer to the medical team if you think medication to control pain is required. Some families benefit from advice on managing activity levels. It is important to find a balance, as painful muscles are a sign of overuse. Schools need to understand the need to NOT over-exercise and allow rests, whilst at the same time not preventing any participation in activities. The Muscular Dystrophy UK Education Guidelines on Physical Education provides useful information on inclusion in PE at school and around pacing activities.