If you suffer from a neuromuscular disease (NMD) such as one of the nine types of muscular dystrophy, Charcot-Marie-Tooth disease (CMT), Guillain-Barre syndrome (GBS), post-polio syndrome (PPS), or one of the muscular inflammation disorders (myositis), how do you deal with chronic pain? If you visit your primary care provider does he/she recognize that your diagnosis includes chronic pain?
A study published in 2005 indicates that the pain suffered by NMD patients is under-treated and more research on the subject is needed. Even though pain is a common problem among patients with NMD, very little is known regarding the causes or how best to treat it.
This study sought to identify pain frequency, pain intensity (scale of 1-10), pain quality (e.g., "deep," "sharp," "dull," etc.), pain interference with quality of life, pain location, and pain treatments for persons with NMD. The 193 participants filled out questionnaires regarding pain they had experienced within the three months preceding the survey. Of those sampled, 73 percent reported pain, with 27 percent of these reporting that this pain was severe on average. Patients with amyotrophic lateral sclerosis (ALS) and myotonic muscular dystrophy (MMD) reported the greatest interference with their activities of daily living due to pain; patients with CMT reported the least interference.
Pain seems to be particularly severe for patients with MMD and particularly common for patients with PPS (100 percent of patients with PPS reported pain). The most frequent site of pain reported by all respondents was the back, followed by leg, shoulder, neck, buttock and hip(s), feet, arm, and hands. Participants reported significantly greater dysfunction secondary to pain than did persons surveyed in the general population. Surveys regarding mental and emotional health were not significantly different between persons with NMD and the general population.
Pain treatments included over-the-counter analgesics such as aspirin, ibuprofen, and acetaminophen; physical therapy; nerve blocks; narcotics; acupuncture; chiropractic care; massage; muscle relaxants; anti-depressants; seizure medications; magnets; biofeedback and relaxation therapy; hypnosis; and counseling. The two treatments that were reported to help the most were chiropractic care and nerve blocks. Very few participants had tried chiropractic care, but this was the treatment most commonly used on a continued basis.
The authors state that their study was limited by use of self-report, low numbers in each diagnostic group, and lack of specificity (especially regarding types of physical therapy). Causes and effective treatment need to be researched more extensively to adequately address this issue.
For further information, refer to: "Chronic Pain in Persons with Neuromuscular Disease," Jensen, M PHD; Abresch, R MS; Carter, G MD; McDonald C MD; Archives of Physical Medicine and Rehabilitation, June 2005, Vol. 86 (6).
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See Muscular Dystrophy and Chronic Pain: Research Emphasizes Need for Long-Lasting Treatments if you have myotonic muscular dystrophy (MMD) or facioscapulohumeral muscular dystrophy (FSHD) and live with daily pain.
See Muscular Dystrophy and ALS Findings to learn about a correlation between Muscular Dystrophy, ALS and beta-catenin, a muscle cell protein has been discovered, and may help further research and treatment in individuals with neuromuscular diseases.
