Inclusion Body Myositis – Physical Therapy and Exercise

Exercise is beneficial for inclusion body myositis. Physical therapy and exercise can help maintain muscle function, improve aerobic capacity, and even increase muscle strength. Cure IBM encourages all inclusion body myositis patients to see a physical therapist with experience in neuromuscular diseases.

Obstacles to Exercise

Exercise can be a frustrating topic for many IBM patients, for 3 reasons:

  1. Guilt
  2. Fear that exercise will worsen the disease
  3. Personal experience

Guilt

Some patients feel guilty because they don’t exercise. Family and friends who don’t understand the disease might tell you that you’d be fine if only you exercised enough. This is not true. Lack of exercise doesn’t cause IBM. Nothing you did or didn’t do caused you to get IBM. It’s not your fault. If you do exercise you’ll still have IBM, and your muscles will still eventually weaken. However, exercise can help. Exercise might improve your balance and decrease your risk of falling, prolong your ability to walk, and keep you independent longer. If you don’t like exercising, get creative and try to find some type of exercise that makes you feel good, something you can enjoy. Exercise not only helps your muscles, it can also boost your mood and attitude.

Fear

Doctors and physical therapists used to worry that exercise would actually worsen inclusion body myositis. They were concerned that exercise would aggravate muscle inflammation, especially since it is known that exercise can temporarily increase blood levels of muscle enzymes, such as creatine kinase. We now know that exercise is safe, but patients with long-standing IBM may be afraid of exercise because of what they were told 10 or 20 years ago. Also, some doctors may not be aware of the new attitude toward exercise, and may still caution their IBM patients to avoid exercise.

Personal Experience

Some people with inclusion body myositis say they’ve tried exercise, but it only makes things worse. If you’re in this group, perhaps you tried to do too much. Even healthy people who start a new exercise program are often over-enthusiastic in the beginning, and cause themselves pain and injury. This can be especially true if you used to be strong and fit but now have a muscle disease. Physical therapists and personal trainers, if they aren’t familiar with IBM, may be too aggressive in their recommendations when you’re just starting an exercise program. Go at your own pace. Start slowly. VERY slowly, if you’ve had problems in the past. Increase your exercise gradually. You might surprise yourself and find out that you can improve more than you expected.

Chair exercise class for seniors

Recommended Exercises

Most IBM specialists recommend cardiovascular exercise and frequent low-resistance exercise. Heavy weights should generally be avoided, as they can cause injury. Many people with IBM enjoy recumbent exercise bicycles. Look for an exercise class that is appropriate for your abilities, and don’t feel that you must keep up with everyone else. Exercise in warm swimming pools is especially popular, since the buoyancy of the water reduces joint stress and makes it easier to move. A gym in your community may have aquatic therapy classes in therapeutically warm pools, with gentle steps or a ramp into the pool, and a lift for those who have trouble entering or exiting the water.

Stretching

Stretching and range-of-motion exercises are important, too. As muscles weaken and motion decreases, stiffness develops. This stiffness makes it even harder for weak muscles to do their jobs. For example, most inclusion body myositis patients develop weakness of the finger flexors, making it hard to curl the fingers into a fist. With time, the fingers start to become locked into the straight, extended position, making it even harder to flex the fingers. Gently pushing the fingers into the flexed position with your other hand and holding this position can stretch the joints and help prevent stiff fingers. Stretching is most effective at the end of an exercise session, when you are warm.

Check with Your Doctor

Check with your doctor before beginning an exercise program. Seek medical attention if you experience chest pain or unexpected shortness of breath. Listen to your body. Take a day off if you have unusual fatigue or muscle soreness.

The Dangers of Inactivity and Immobilization

Remember that muscles weaken and atrophy if they are not used, even in healthy people. Movement is vital. If you are hospitalized or immobile due to an illness or injury, it is crucial to resume activity as soon as you are able, in order to prevent further muscle loss.

References

The following scientific articles discuss exercise in inclusion body myositis:

Improvement of aerobic capacity after an exercise program in sporadic inclusion body myositis. Johnson LG, et. al.

Exercise as a therapeutic modality in patients with idiopathic inflammatory myopathies. Alexanderson, H. and Lundberg, I.

Home exercise program for individuals with inclusion body myositis 

Personal Experiences

Read about Joe Sanchez, a man who has benefited from exercise as he copes with IBM.

Joe Sanchez Fights Inclusion Body Myositis with Exercise

Exercise Videos for Inclusion Body Myositis

Jim Berg, an IBM patient, and Judy Hensley, a physical therapist, have teamed-up with The Myositis Association to produce an excellent series of videos.

Introductory Video

You can find the other videos in the series by searching on YouTube for: myositis exercise
Look for Mr. Berg and Ms. Hensley in the search results (Physical Therapist Justin Sneed works with Mr. Berg in a few of the videos).

by Kevin Dooley, MD

Revised November 5, 2018

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