Facioscapulohumeral Muscular Dystrophy (FSH, FSHD)
Medical treatments for FSHD are relatively few, and none are specific to the disease. There’s no treatment that can halt or reverse the effects of FSHD, but there are treatments and devices to help alleviate many of the symptoms.
Anti-inflammatory drugs known as nonsteroidal anti-inflammatories, or NSAIDs, are often prescribed to improve comfort and mobility. These are the same drugs taken by many people with arthritis and other inflammatory conditions.
Surgical and mechanical help
Surgical procedures to stabilize the shoulder blades (scapulae) by attaching them to the ribs have helped some people with FSHD.
In this procedure, the scapulae are fixed to the ribs so that they don’t move. The patient gains some leverage with the arm on the side that’s had the operation, since the scapulae no longer slide around.
Although this type of surgery may actually decrease the arm’s range of motion (since the shoulder blade can no longer rotate normally), the ability of the arm to function may be better, since the arm’s leverage point is now stable.
It’s important to go to a surgeon who fully understands FSHD and has had experience with this exact type of surgery.
Physical therapists often recommend devices such as back supports, corsets, girdles and special bras for people with FSHD. These supports help to compensate for weakening muscles in the upper and lower back.
Lower leg braces, known as ankle-foot orthoses, or AFOs, can compensate for weakening muscles in the lower leg that cause tripping and falling. These may be recommended by the physician or physical therapist and can be purchased as off-the-shelf or custom-made models. Some people find a lightweight, high-top shoe can be as helpful as an AFO in supporting the foot, at least in the early stages of weakness.
Physical therapists advise that those with FSHD shouldn’t resist using these types of devices for fear their muscles will get “lazy.” A supportive corset or AFO can help with mobility and endurance, they say, and supporting muscle in a normal position can help you use your remaining strength more effectively.
Massage or warm, moist heat (for example, from hot packs you can put in a microwave) are also good for the discomfort associated with FSHD.
Since the precise underlying defect that causes muscle loss in FSHD isn’t yet understood, it’s hard to make precise recommendations about exercise.
However, physical therapists who have observed people with FSHD for many years say that moderate exercise appears to do no harm and may even be helpful, at least for muscles that haven’t severely weakened.
Therapists advise that exercise shouldn’t cause muscle cramping, significant muscle pain or extreme fatigue. An exercise program for someone with FSHD should be directed by a professional, such as a physical or occupational therapist, who has experience with neuromuscular disorders. The program should emphasize exercising muscles that are still relatively strong and resting those that have weakened. This can be accomplished with careful positioning and adaptation of standard exercise regimens.
For more on this topic, see Exercising with a Neuromuscular Disease.
There’s no specific diet known to help in FSHD or any other muscular dystrophy.
Consult with your MDA clinic doctor about specific dietary recommendations for you and for advice on dietary supplements. Some doctors recommend the dietary supplement creatine for people with muscle disorders, but it should be taken with care and under medical supervision.