Exercise and physical therapy are important parts of standard myositis treatment plans. Physical exercise has been shown to reduce inflammation, reduce fatigue, increase stamina, and build muscle, even in patients with myositis. Indeed, exercise is currently the only treatment recommendation for patients with inclusion body myositis.

There is a strong association between aerobic capacity and general health, both in healthy individuals and those with myositis. Regular physical activity and exercise can improve one’s quality of life and reduce the risk of serious chronic diseases, such as type II diabetes, osteoporosis, hypertension, and cardiovascular disease. These are all complications of myositis diseases or their treatment, so exercise is doubly important.

Starting an exercise program

  1. Have your physician clear you for exercise. Do not start exercising if you are currently in an inflammatory flare.
  2. Seek expert guidance from a physical therapist who understands myositis diseases. Have the therapist work with you to develop an individualized treatment plan.
  3. With the guidance of the therapist, learn how to do the exercises correctly. After that, you can probably do them on your own.
  4. Each person must find the proper exercise program that is right for them. Exercise should be designed to strengthen muscles and muscle groups that are not affected by your disease process, while protecting the muscles that are affected.
  5. The proper program means you will notice improved efficiency with essential daily activities and be able to perform those activities without overuse of involved muscles. If you find you are working much harder to perform normal, everyday functional activities, the exercise is probably causing undue stress to involved muscle groups, and you should consult with your physical therapist to see how best to change your program.
  6. If your physical or occupational therapist is unfamiliar with myositis and the exercise needs of myositis patients, show them the information on this page and other areas of The Myositis Association’s website.

Myositis and the muscles

One of the reasons myositis patients feel fatigued is because their muscles are weakened by the disease. Movement relies on many muscles working together, so when one muscle or muscle group becomes weak, other muscles must work harder to compensate. This causes fatigue.

It is natural to want to avoid movement when muscles are painful and fatigued. Sometimes people are even afraid that exercise will cause damage or increase the progression of the disease process. But avoiding movement only makes the pain and weakness worse.

Muscles that are not exercised regularly become weaker and can even atrophy (waste away).

Muscles will begin to lose strength within 24-48 hours of inactivity. Maximum muscle strength is lost within the first six weeks. The only way to recover muscle strength is by using your muscles. If muscles atrophy, they cannot be built back up again.

That’s why exercise is so important. Exercise keeps weak muscles from atrophying and helps the body compensate for weakness by strengthening the surrounding musculature.

Tips for smart exercise

Find an activity or exercise that is both appropriate for your own level of function and enjoyable for you. For example, walking, gardening, resistance training, or swimming. Exercises can easily be adapted as needed.

Exercise should be incorporated into your daily life, so it is part of your usual routine.

Especially in the beginning, take it gentle, slow, and steady. Overdoing it can cause symptoms to flare. If you feel overly fatigued or in pain the next day, you’ve done too much. Stay in tune with your body, so you know where your limits are.

Take time to warm up. This gradually increases blood flow and heart rate.

It’s also important to cool down, allowing your body to gradually recover.

Gradually build up the intensity and duration of exercise to a rate of exertion that you find somewhat challenging but not overly difficult. It may take 6-12 weeks to adapt to a new exercise program.

When exercise becomes easier and you feel better without as much fatigue, you can then add additional load to your exercise. If exercise does not get easier or you end up feeling fatigued but recover by the next morning, then you might be at your ideal intensity level.

You may have off days. That’s okay. Unless you’re having an exacerbation/flare, you should have a less intense routine for your off days, just keep the routine going. It’s important to do something rather than nothing.

If you are having a flare, it may be best to avoid additional exercise and limit your activity to necessary daily functional mobility and walking.

Keep it fun and social. Exercise buddies help keep you coming back as well as enjoying the moment.

Since exercise can cause an elevation in CK (creatine phosphokinase) levels, make sure your doctor knows that you’re on a regular exercise program, especially when blood work is due.

Remember: It is better to do something than nothing at all.

Do not continue exercises if you experience severe pain or have uncontrolled high blood pressure or irregular heartbeat.

Additional resources about exercise:

The physiology of muscle pain and weakness – A presentation by Sue Maillard at the TMA Annual Patient Conference

Home exercise program for IBM – A presentation by Dr. Helene Alexanderson and Sue Maillard at the TMA Annual Patient Conference
Presentation | Video

Home exercise program for DM, PM, and NM – A presentation by Dr. Helene Alexanderson and Sue Maillard at the TMA Annual Patient Conference
Presentation | Video

Hand exercise program for patients with IBM – A presentation by Dr. Helene Alexanderson at the TMA Annual Patient Conference with materials from Dr. Malin Regardt
Presentation | Video

Aquatic therapy – A presentation by Sheralee Beebe at the TMA Annual Patient Conference
Presentation | Video

Exercise videos