Pain in Neuromuscular Diseases: Who Knew?

This second of a series of three stories covering the 2014 MDA Clinical Conference discusses pain in neuromuscular disorders

Therapy in 95-degree water is a pain management tool endorsed by physical medicine and rehabilitation physician Gregory Carter, who presented at the 2014 MDA Clinical Conference.
Article Highlights:
  • A presentation by physical medicine and rehabilitation specialist Gregory Carter from St. Luke's Rehabilitation Institute in Spokane, Wash., offered professionals several ways to help patients manage pain related to neuromuscular disorders.
  • Carter asserts that physical, behavioral and cognitive therapies have a place in managing pain, as do medications.
by Margaret Wahl on April 4, 2014 - 9:52am

The 2014 MDA Clinical Conference, held in Chicago March 16-19, was attended by some 500 people, mostly physicians and other health care professionals. Be sure to check out MDA's two-minute video celebrating the conference's I Am Progress theme.

"Chronic Pain in Neuromuscular Disease: Who Knew?" was the aptly titled talk on this subject given by Gregory Carter at the 2014 MDA Clinical Conference, held in Chicago March 16-19.

Carter, a physician who specializes in physical medicine and rehabilitation and until recently directed the MDA clinic in Olympia, Wash., said he gave his presentation this tongue-in-cheek title because pain in these disorders is "often overlooked" even though it "is a major part of the disease burden" in neuromuscular disorders. (Late in 2013, Carter became medical director at St. Luke's Rehabilitation Institute in Spokane, Wash.)

"A lot of people complain of fatigue," Carter said, "which turns out to be pain."

Neuromuscular disorders all cause some degree of pain and fatigue, Carter noted, although these closely linked concerns often don't get the attention he believes they deserve.

"A search for a cure is inspirational," he said, "but improving treatment for chronic pain is, well, not so much." Much of the care at MDA clinics and elsewhere is centered on diagnosis, while most research is aimed at disease modification, Carter said, "yet most treatment remains palliative," focused on relieving symptoms without necessarily having a curative effect on the underlying disease.

Treatment goals should not focus solely on modifying disease, but on lessening the burden of a disease, Carter said, and "this would mean assessing and treating chronic pain."

Pain in slowly progressive neuromuscular disorders, such as Charcot-Marie-Tooth disease (CMT), facioscapulohumeral muscular dystrophy (FSHD), and type 3 spinal muscular atrophy (SMA), may go unnoticed by others, yet can create tremendous disability, he said, offering some suggestions for the mostly physician audience to use in helping patients manage their pain and improve their quality of life.

Physicians, he said should coordinate their care through physical and occupational therapists, clinical nurse specialists, social workers, psychologists and consulting physicians, depending on the circumstances.

"There is only so much you can do to correct the biomechanical problems [associated with neuromuscular disorders], but you can do some things," he said.

Carter's suggestions for health care professionals to consider and adapt to a patient's specific situations included:

  • pool therapy in 95-degree (warm) water;
  • stretching;
  • myofascial release (a specialized stretching technique);
  • massage;
  • bracing;
  • maximal use of adaptive devices, such as lifts, beds, cushions and power chairs (without waiting until the patient falls and breaks a hip to prescribe a chair, he cautioned);
  • ultrasound therapy over painful joints, particularly in the shoulder area;
  • application of heat and ice;
  • acupressure (application of finger pressure to specific points on the body);
  • adapting school or work environments;
  • use of educational or vocational assistance agencies;
  • controlling weight;
  • optimizing nutrition;
  • hypnotherapy;
  • cognitive-behavioral therapy (in which therapists help clients overcome difficulties by changing their thinking, behavior and emotional responses);
  • mindfulness training (focusing attention on the present moment); and
  • detection and treatment of depression.

In a question-and-answer session following Carter's talk, the point was raised that recreational and social aspects of activities to manage pain and promote exercise and mobility are important and that getting young patients with disorders like Duchenne muscular dystrophy (DMD) to enjoy the water at a young age is a good idea.

An audience member commented that, even for patients with amyotrophic lateral sclerosis (ALS), water therapy can be beneficial.

Some medications work well, too

When questioned about pain medications, Carter said he had success with pregabalin (Lyrica) and gabapentin (Neurontin) for pain originating in the nervous system that's associated with CMT. He said he also has seen good results with nortriptyline (Sensoval, Aventyl, Pamelor) for pain of nervous system origin.

"In the past, we have overprescribed opiates," he said, adding, "There is great potential for cannabinoid-based pain control, and it needs more investigation. Within five to 10 years, I think there will be cannabinoid-based meds with no associated intoxication."

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