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. This advice has now been retracted and exercise is recommended for myositis patients.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. First, there is not any one approved exercise program for myositis. We have included some recommended programs with links below.

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

Watch the Exercise in Place webinar series with Megan, Lauren, Fin, and Ruben, OT/PT team at Johns Hopkins Myositis Center. These include practical and helpful information for you, the patient, and that you can use to share with your local OT/PT team, as well as exercise demonstrations. The series also includes an entire session on fall prevention and safety.

Visit Exercise in Place for all episodes.

Exercise as a treatment for myositis

Watch the video session by Helene Alexanderson, Associate Professor, PhD, physical therapist at the Karolinska University Hospital and Karolinska Institutet in Stockholm Sweden.

Exercise in Place, Part 1

Exercise in Place, a webinar series with Megan, Lauren, Fin, and Ruben, OT/PT team at Johns Hopkins Myositis Center. Practical, helpful information, and exercise demonstrations for myositis patients.

Myositis and exercise research and resources

Home Exercises, IBM

Home exercises for patients with inclusion body myositis. Program was evaluated with a small study.

View Program

Home Exercises, PM and DM

Home exercises for patients with polymyositis and dermatomyositis. Follow the program exactly as it is presented.

View Program

Exercise as a therapeutic modality

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

Read the full review

Getting started, sticking to exercise program

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

View Presentation

Functional Index-2 (Slides)

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.

Print and take this to your physical therpist.

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

Find PT in the U.S.

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

Search in the U.S.

Find PT in Canada

Search the CPA for a Physiotherapist in Canada.

Search in Canada

Find PT in the UK

Search the CSP for a Physiotherapist in the UK.

Search in the 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.” 

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