Muscular Dystrophy and Neuromuscular Disorders: Research Emphasizes Need for Long-Lasting Treatments

If you have myotonic muscular dystrophy (MMD) or facioscapulohumeral muscular dystrophy (FSHD) and live with daily pain, you are not getting enough attention. The authors of a recent study also concluded that chronic pain is a common problem in persons with FSHD and MMD (more so with FSHD), and to date, there doesn't appear to be any consistently effective treatment.

Muscular dystrophy (MD) is a group of inherited diseases characterized by weakness and wasting away of muscles. Although there are nine types of MD, this particular study focused on the two most common forms. Surveys were mailed to participants (mainly recruited from the National Registry) questioning about overall intensity and duration of pain, if pain interfered with daily functioning, where pain was located, what pain treatments were used, and whether relief was provided by pain treatments used. They were asked if they were currently using or ever had used any of 25 specific pain treatments (physical therapy, nerve blocks, biofeedback or relaxation training, acupuncture, magnets, massage, hypnosis, counseling or psychotherapy, narcotics, marijuana, chiropractic adjustments, heat, ice, TENS units, acetaminophen (Tylenol), aspirin, ibuprofen (Motrin), muscle relaxants, anti-convulsants).

Results showed that 82 percent of patients with FSHD and 60 percent of patients with MMD reported pain. In both groups, the most frequent pain sites were lower back and legs; both groups reported that pain interfered with function and with enjoyment of life. More than 46 percent of all of the patients reporting pain—even severe pain—used no treatment. Those regularly using some form of treatment used ibuprofen, aspirin, acetaminophen, or strengthening and range-of-motion exercises most commonly. Although narcotics and marijuana were reported to be most effective, very few patients who had tried them continued to use them (probably due to intolerable side-effects and/or availability). Massage, chiropractic manipulation, and nerve blocks were reported to be effective but apparently not on a continuous basis. The application of heat was one treatment reported to be effective and used regularly by a substantial number of participants.

The authors of this study emphasize the need to develop effective and long-lasting pain treatments not only for persons with MD but also for those with other neuromuscular disorders. Treatment needs to focus on the specific causes of pain, e.g., overuse of muscles that are compensating for paralyzed or weak muscles; muscle imbalance causing spinal deformities; pain worsened by assistive devices (wheelchairs, crutches). In order for a treatment to be effective, it needs to be customized to the disability and the disease/disorder that caused it. It also should be easily available and have few bad side-effects.

For further information, refer to: "Chronic Pain in Persons With Myotonic Dystrophy and Facioscapulohumeral Dystrophy," Jensen, M PhD; Hoffman, A MPH; Stoelb, B PhD; Abresch, R MS; Carter, G MD; McDonald, C MD; Archives of Physical Medicine and Rehabilitation, February 2008 , Volume 89(2):320-8.