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.
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:
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:
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.
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.
Learn more about the Myositis Education and Support Group at HSS.
Summary written by Abby Bradford, Group Facilitator & Social Work Intern.