March 14, 2008

Chronic Pain Common in MMD, FSHD

Chronic pain of long duration is common in adults with myotonic muscular dystrophy (MMD) and facioscapulohumeral muscular dystrophy (FSHD), and it generally worsens as disability level increases, say investigators at the University of Washington-Seattle and the University of California-Davis.

The researchers, who published their findings in the February issue of Archives of Physical Medicine and Rehabilitation, included Greg Carter, co-director of the MDA clinic at the University of Washington-Seattle.

They analyzed surveys from 257 study participants, 131 with MMD and 126 with FSHD, who were at least 18 years old. Most were invited to respond through the National Registry of FSHD and MMD Patients and Family Members based at the University of Rochester (N.Y.).

In the MMD group, 79 (60 percent) said they had pain, and in the FSHD group, 103 (82 percent) did. The average duration of the pain was 11 years for those with MMD and 13 years for those with FSHD. About a quarter of those in each group reported their pain as severe.

The lower back and legs were the most common pain sites, which the study’s authors say reflect the mechanical stress these areas are under in these dystrophies.

More than 46 percent of those reporting pain of any kind said they weren’t using any treatment, and of those reporting severe pain, more than 42 percent weren’t using any treatment.

Of those who were treating their pain, the most common remedies were ibuprofen or aspirin (46 percent); acetaminophen (34 percent); strengthening exercises (29 percent); range-of-motion exercises (29 percent); and heat (26 percent). All of these were reported as somewhat effective.

Eight percent were using prescription narcotics, although 33 percent had tried them, and these were rated highest in effectiveness. The investigators say side effects such as grogginess and constipation are the biggest drawback to these medications. Marijuana was also rated highly effective and was being used by 4 percent of those surveyed, although 11 percent said they had tried it. The researchers say 11 U.S. states now allow medicinal marijuana use and that lack of access is a significant barrier.

The authors conclude that there’s a need for more effective and long-lasting pain treatments for people with MMD and FSHD. They say low-intensity, graded exercise should be investigated.