Exercise and Myositis

Resources, Research, Videos

Exercise is an important part of living with myositis and is currently the only “treatment” for those with inclusion body myositis. There are many factors to consider when beginning an exercise program especially when you have a muscle disease.

Not too long ago we, as patients, were told by many physicians to not exercise as it was thought we would be doing more damage and causing more inflammation. This advice has now been retracted and exercise is recommended for myositis patients.

What is the optimal program and how do you get started? This question is important and one that needs great consideration.

  • Talk to your physician about beginning a physical therapy (PT) program and if needed, providing you with a referral to a physical therapist that has knowledge and experience working with myositis patients.
  • If your PT does not have experience, talk to them about their willingness to research and learn prior to starting.
  • Work together to create an individualized program and ask them to teach you the correct way to perform the exercises so you do not injure yourself.
  • For those with polymyositis and dermatomyositis, ask about utilizing the Functional Index-2. You can download and print the Functional Index-2 and take it to them for reference.
  • Talk to your PT about including aerobic exercise in your individualized program.
  • Discuss your goals and what to expect with your PT.
  • If you do not see improvement and/or you find you are in pain, stop and talk to your PT and physician.

Below, we have provided resources, research, and videos about Exercise and Myositis.

Prior to beginning an exercise program, consult with your physician to avoid injury.

Myositis and exercise research and resources

Functional Index-2

Dr. Helene Alexanderson’s Functional Index 2 is what many myositis specialists recommend for polymyositis and dermatomyositis patients. Dr. Alexanderson is with the Karolinska Institutet / Karolinska University Hospital, in Stockholm, Sweden.

Functional Index-2

Exercise interview with Dr. Daniel Chellete

MSU interviewed Dr. Daniel Chellete from Duke University Medical Center Physical Therapy Department for an article about myositis and exercise.

Read the full interview

Systemic effects to exercise

Dr. Helene Alexanderson provides information about the systemic effects to exercise. Dr. Alexanderson is with the Karolinska Institutet / Karolinska University Hospital, in Stockholm, Sweden.

View Presentation

Exercise as a therapeutic modality in patients with idiopathic inflammatory myopathies

This review provides detail about the effects of exercise in the various types of the inflammatory myopathies (IIM’s).

Read the full review

Home Exercises, PM and DM

Home exercises for patients with polymyositis and dermatomyositis.

View Presentation

Getting started and sticking to an exercise program

Presentation about getting started with an exercise program, sticking to it, and information about pain and fear.

View Presentation

Find a physical therapist

Find a PT in the U.S.

Search the ATPA for a physical therapist in the United States.

Find a PT, U.S.

Find a PT in Canada

Search the CPA for a Physiotherapist in Canada.

Find a Physiotherapist, Canada

Find a PT in the United Kingdom

Search the Chartered Society of Physiotherapist for a Physiotherapist in the United Kingdom.

Find a Physiotherapist, UK

“For severely weak patients, it is best to get established with a physical therapist with knowledge of muscle disease, because so much can go ‘wrong’ with joints and muscles in very weak patients,” according to Dr. Kyle Covington, Director of Assessment and Evaluation, Physical Therapy Division at Duke University School of Medicine.

“If only a few muscles around a joint are active, it can dramatically impact how the joint is functioning, and a physical therapist can assess the condition and make very targeted recommendations on how to do an exercise.

I think it is important that it is stressed that exercise IS a viable option at any stage of the process, but for those who are very weak, a specific plan is needed and that pain should never be part of the exercise plan. NO PAIN, NO GAIN is NOT a mantra for this.” 

Myositis and Exercise Video Session

Patient-led Education Session with Fiona using the Functional Index-2

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