Exercise and Myositis

Resources, Research, Videos

Exercise, or movement, 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 This advice has now been retracted and exercise is recommended for myositis patients, and the sooner the better.

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 “approved” exercise program for myositis. Each of us has different needs and abilities. And we have different access (gym, pool, etc.) and environments. We have included some recommended ideas and programs from some top experts in myositis below.

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

Watch our Exercise in Place Series

Occupational therapists Megan McGowan and Lauren Burgess, and physical therapists Fin Mears and Ruben Pagkatipunan, with the Johns Hopkins Myositis Center, discuss safe strategies to Exercise in Place while we shelter in place due to the COVID-19 pandemic.

There are now five (5) episodes! Watch them on YouTube, or here with the playlist below.

Myositis Support Gets Moving

Introducing Myositis Support Gets Moving on Clubhouse

The importance of movement, or exercise, cannot be expressed enough. Myositis Support Gets Moving is a new program with the goal of increased movement of whatever kind and amount that is most appropriate for each individual, and focusing on adequate daily protein intake for muscle preservation and building. The sooner we create and stick to a plan, the better! ALL myositis patients are welcome to join and are encouraged to utilize support partners for accountability, motivation, encouragement, and support. See further details and join us on Clubhouse!

Exercise as a treatment for myositis

Helene Alexanderson, Associate Professor, Ph.D., a well-known physical therapist with a focus on myositis at the Karolinska University Hospital and Karolinska Institutet in Stockholm Sweden joins us to discuss exercise as a treatment for myositis.

Blood Flow Restriction Exercise

Brett Burton, PT, DPT, SCS, ATC, CSCS, Founder of Somavive and Proactive Performance Coach joined us to explain the technique of blood flow restriction, demonstrate how it can be used by myositis patients to improve/maintain muscle strength, and to answer your questions.

Myositis and exercise research and resources

Home Exercises, IBM

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

View Program

Home Exercises, PM and DM

Home exercises for patients with polymyositis and dermatomyositis.

View Program

Exercise as a therapeutic modality

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

Read the full review

Getting started, sticking to exercise program

A 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 therapist.

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.” 

Myositis and Exercise Research Articles and Resources:

Alexanderson H. Exercise in Myositis. Curr Treatm Opt Rheumatol. 2018;4(4):289-298. doi:10.1007/s40674-018-0113-3

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