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Exercise and Physical Therapy Guidelines for People with Myositis

Adapted from a talk at the Myositis Support Group of Hospital for Special Surgery

Note: Because exercise increases your levels of CPK (creatine phosphokinase), your doctor should be aware of any exercise program you are doing so that lab results are not confounded by your physical activity. For the same reason, it may be wise to avoid exercise the day before blood tests are done.

Why should I exercise?

While exercise will not "cure" myositis, it may help mediate certain aspects of the disease. Exercise can increase muscle strength, flexibility, and cardiovascular status, as well as improve your psychological well being. While it is questionable whether muscle can actually regenerate after it has been damaged by myositis, you can maintain and strengthen the muscle you have. You also may be able to prevent further loss of muscle tissue. Exercise also may enable you to decrease your medication levels.

Clinical research on exercise and myositis has been extremely limited. Sometimes the "research" is just a case study of how one patient fared before and after starting an exercise program. Since myositis has many different manifestations, it is difficult to generalize the results of such cases to all patients.

However, a recent article in the British journal Rheumatology reported that there were no detrimental effects for 10 people with myositis who participated in an exercise study. They were given a home program involving 15 minutes of exercise done five times a week. The program consisted of warm-up, stretching, and strengthening exercises. A 15-minute walk was also recommended for program participants. The results of this study were very positive:

  • Disease activity did not get worse
  • Average CPK level was the same before and after completing the study
  • No significant changes occurred in muscle biopsy or MRI results
  • Two people decreased their prednisone levels
  • People felt better about the status of their health
  • The people who were weakest in the beginning made the greatest gains

When should I exercise?

  • Exercise only after getting your physician's approval. Then find an exercise program that you like, are comfortable with, and know how to do properly.
  • To avoid accidents, exercise when you are mentally alert.
  • Exercise when you are well hydrated (drink water beforehand), well rested, and warmed up.
  • Know what stage of disease you are in. If you are in a flare, your muscles may be compromised. Since exercise and muscle contractions always produce "micro-damage" in your muscles, your muscles may not be able to heal as well in the midst of a flare.
  • Because exercise increases your levels of CPK (creatine phosphokinase), it can confound lab results. It may be wise to avoid exercise the day before blood tests are done. Also make sure your doctor is aware of your exercise program.

Do I need to see a physical therapist?

Because what is best for someone else with myositis may be inappropriate for you, an individualized program is ideal. Consider asking your doctor for referral to a physical therapist who can design the best program for you.

Physical therapists bring extensive knowledge of the musculoskeletal system to an exercise plan. They can teach you how to do an exercise correctly to avoid harm and maximize benefits. Physical therapists can provide alternative exercises to people with compromised muscles. Trainers in a gym may or may not understand the special needs of people with myositis. However, in order to have a physical therapist design an exercise program for you, you need to get a prescription or referral from your doctor.

What if the physical therapist has never heard of myositis?

Due to the rarity of myositis, it is possible that a physical therapist may not have heard of your condition. That does not mean that the therapist cannot treat you. Physical therapists who have a good knowledge base and practical experience should know what kind of program would most benefit a person with muscle inflammation.

Ask if the therapist has ever treated someone with a similar condition and gauge the response. If someone pretends to know exactly what will "cure" you, be skeptical. But be just as wary of a person who doesn't take myositis seriously, is unwilling to research your illness, and/or will not contact your physician for further information or clarification.

What kind of exercises should I do?

First and foremost, do exercises that you enjoy. Any exercise is good exercise as long as you pay attention to good body mechanics. If you dread your exercise program, you will not follow through on it. If possible, find a friend who will exercise with you. Friends are a good motivational tool and can give you support.

Start gradually. Don't jump into a full-fledged program - this is something you will work up to. Ideally, you should eventually include aerobic activity three to four times per week for 20 to 30 minutes, plus strengthening exercises two to three times per week.

Work on movements that:

  • increase flexibility (such as stretching)
  • develop strength (working against resistance, such as bands or light weights), and
  • enhance endurance (such as walking or running, which boost cardiovascular status.)

Always begin your workout with stretching exercises. Do not bounce when you stretch. Rather, hold stretches for 20-30 seconds.

As much as possible, do "closed chain" exercises. Closed chain means that you have both feet on the ground, like a closed system between yourself and the ground. Open chain means that you are sitting on a chair or do not have your feet on the ground. Closed chain exercises are believed to be very functional.

Range of motion exercises can be a focus of an exercise routine.

  1. The easiest level is passive range of motion. Someone else moves parts of your body for you. For example, someone may move your arm around for you; you don't work the muscles at all. Passive range of motion exercises keep motion around the joint when a person is not able to do such exercises for themselves.
  2. The next level is active assistive range of motion]. In this case, you move your arm as much as you can, and someone finishes the movement for you.
  3. The final level is active range of motion exercises. You move that part of your body by yourself.

Why - and how - should I check my pulse?

In cardiovascular activity, your goal is to raise your heart rate above its "resting" or "baseline" level for 15 to 20 minutes at a time.

To take your pulse, use any finger but your thumb and rest it lightly on the inside of your wrist where you find your pulse. To get your heart rate, count the beats for 60 seconds (or for 30 seconds and then multiply by 2).

You should be familiar with your baseline pulse is so that you can compare it after cardio exercise. If your pulse goes so high that it approaches 220 minus the number that is your age, seek medical help. Your heart rate is elevated to dangerous levels.

How can I modify an exercise program if I have difficulty?

There are many ways to modify your exercise program.

  1. Change the length of time you exercise.
  2. Change your posture. You can either use gravity and body weight as resistance by standing up or you can avoid gravity by sitting or lying down or exercising in a pool. For example, raising your arm to shoulder height is different while standing on the ground than while standing in a pool.
  3. Increase or decrease the number of repetitions (the number of time you repeat an exercise) or the number of sets (a group of repetitions).
  4. Use resistance, like elastic bands or weights, and change the amount of resistance.
  5. Increase or decrease the amount of time you rest between sets or repetitions.
  6. Increase or decrease the number of times per week that you exercise.
  7. Add or delete exercises in your program
  8. How do I know if I am doing these exercises correctly?
  9. Listen to your body. It will probably tell you if you are doing too much or if you are doing an exercise incorrectly. Move at your own pace. If something hurts, stop. Use pain as a warning sign to make you reevaluate what movement it was that you were doing that caused pain, and why the pain happened. Too many repetitions? Too much weight?
  10. Forget the old "No pain, no gain" motto of exercise. While muscle fatigue and soreness are expected in any exercise program, whether for healthy or inflamed muscles, something may be wrong if there is pain. Stop and think about it.
  11. Why is there always so much emphasis on rest?
  12. Rest is very important. It allows your muscles to recover. You are doing micro-damage to your muscles every time they contract, and you need to let this heal. You also need to vary the pace and the types of exercises you do. Start exercising gradually and plan your week around your exercise. That way, your "bigger workouts" will be followed by well-deserved periods of rest.
  13. Most important, be careful, be safe, have fun, and keep a positive attitude!

Learn more about the Myositis Education and Support Group at HSS.

Summary written by Abby Bradford, Group Facilitator & Social Work Intern.


Sherry Backus, MA, PT
Senior Research Physical Therapist, Motion Analysis Laboratory
Hospital for Special Surgery

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