Adapted from a presentation at the Myositis Support Group at Hospital for Special Surgery
Ms. Yanelli began with a brief overview of the functional limitations that affect those with myositis. Depending on the type of myositis, these may include:
- difficulty getting up from a seated position or falling and being unable to get up
- progressive muscular weakness with pain or discomfort as the muscles weaken
- changes in voice and/or weakness of the vocal chords (dysphonia)
- difficulty swallowing (dysphasia)
- generalized fatigue
*Please note that no exercise/physical therapy program should be considered without the advice of a physician. For the purposes of this summary, exercise is considered the same as physical therapy.
Ms. Yanelli shared studies that demonstrated evidence-based research on the positive effects of exercise for people with dermatomyositis (DM) and polymyositis (DM).
One study, called the Effects of Physical Exercise Shortly on an Acute Episode of Dermatomyositis/Polymyositis,  found that:
- Physical training begun 2-3 weeks after an acute exacerbation of DM/PM seems to be safe and useful.
- Muscle atrophy, due to lack of activity, may be partially prevented.
- Level of disability can be decreased.
Please note that, with regard to exercise during a flare, Ms. Yanelli stated that this has been studied only on a case by case basis and the effects differ for each individual. If exercise is to be continued, isometric exercises and gentle range of motion may be a safe starting point. Continued discussion with your physician and physical therapist is required.
In a study of DM/PM patients on the benefits of intensive aerobic training  it was found that:
- Blood lactate levels were normal before and after treatment.
- There was improvement in strength, balance, performance in activities of daily living, and walking speed.
In a further study investigating the benefits of intensive muscular training in patients with DM/PM,  it was concluded that:
- Patients with chronic, stable DM and PM can perform intensive resistive exercise as described in this study - with the approval of a physician. Results may include reduced impairment and an increase in activity level without increased muscle inflammation.
In a literature review, which provided a summary of available research, the following results were reported .
- Exercise is an important part of treatment for people with idiopathic inflammatory myopathies.
- Improvement was seen in function, ability to perform activities of daily living, and health-related quality of life in adult polymyositis (PM), dermatomyositis (DM), and inclusion body myositis (IBM), with differing, individualized exercise programs.
- There were no signs of increased muscle inflammation. The data suggests that intensive exercise can reduce inflammation in PM and DM, but larger studies are needed to confirm.
- Moderate to intensive resistance and aerobic exercise is well tolerated and increases function in adult, chronic, low-activity myositis.
- Easy to moderate resistive exercise is well tolerated in people with active, recent-onset myositis.
- The results involving resistive and aerobic exercise are encouraging for improvement in people with IBM but larger studies are needed to confirm.
- There is little research available regarding exercise in juvenile dermatomyositis.
- Based on research presented here and in case presentation, it has been concluded that exercise is safe and recommended for people with myositis; however, larger studies are needed to further support these findings.
Finding a Physical Therapist
It can be difficult to find a physical therapist who has had experience with myositis. It may be helpful to take the information above to a therapist so that he/she can research further and discuss with you and the prescribing physician.
What to expect from your physical therapist
The following factors are essential in your physical therapist:
- has knowledge of myositis
- understands your limitations
- assesses functional ability of upper and lower extremities, as well as pain
- helps to enhance your performance and functioning
- reviews your expectations, prognosis, and progress with you on a regular basis
- answers your questions
- sets realistic goals for you based continued discussion with you and your physician
Types of Exercises
Exercise programs should be based on your individual prescription and tailored to your ability, the therapist may include the following:
- Balance, coordination, and agility training, which includes posture awareness and task-specific training
- Aerobic endurance conditioning, which can be done through swimming, class-based exercises, dance, Tai Chi (also good for balance training) and by using equipment like stationery bikes, elliptical machines, and arm bikes
- Strength training, which might include active, active-assisted, and resistance exercises
- Non-aerobic, might include the use of free weights, hand strengthening exercises (squeezing putty or a gripper), functional exercises (sit-to-stand training, reaching for weights on multi-level shelving) weight machines, and thera-bands
- Flexibility exercises, such as muscle lengthening, range of motion, and stretching
- Relaxation/respiratory training helps to patients use diaphragmatic breathing in various positions to help strengthen this muscle and to learn to use movement more efficiently during exercise, transfers from bed to chair, chair to toilet, and activities of daily living.
- Gait training to learn how to use assistive devices and to demonstrate proper movement and use mirrors for visual feedback. A physical therapist should be able to help minimize abnormalities in gait to a point where a patient is able to walk as independently as possible.
- Examples of gait assistive devices include: canes, rolling walkers, standard loftstrand crutches, and platform rolling walkers.
- Some of the most common durable medical equipment for use in the home include the tub transfer bench, grab bars for the bath, shower, and raised toilet seats.
- To help with foot drop, Ms. Yanelli suggests an ankle/foot orthotic made of carbon fiber.
Exercising After Physical Therapy
- Join a gym or wellness program, sign up for exercise classes, continue to exercise at home.
- Most communities offer wellness and activity programs at low cost or for free.
- Educate yourself on the safety and benefits of exercise.
- Physical therapy should be discussed with your doctor.
- Make sure that your physical therapy program is tailored to fit your individual needs. If your therapist is not familiar with myositis, recommend the research provided in this summary.
- With the help of your physical therapist, consider ways to continue exercise after you are discharged from therapy.
- Always keep in mind the importance of "sticking with it" and never give up!
Learn more about the HSS Myositis Support Group, a free support and education group, held monthly for people with myositis and their family and friends.
1 Cecilia Varju, Edit Petho, Reka Kutas and Laszlo Czirjak, Clinical Rehabilitation 2003 17:23
2 “Benefits of Intensive Resistance Training in Patients with Chronic Polymyositis or Dermatomyositis,” Helene Alexanderson, Maryam Dastmalchi, Christina H. Opava, Ingrid E. Lundberg, Arthritis & Rheumatism (Arthritis Care & Research) Vol. 57, No. 5, June 15, 2007, pp. 768-777
3 “Exercise as a therapeutic modality in patients with idiopathic inflammatory myopathies," Helene Alexanderson and Ingrid E. Lundberg, 1040-8711 copyright 2012 Wolters Klewer Health, Lippincott Williams & Wilkins
4 Alexanderson, Helene (2012). “Exercise in inflammatory myopathies, including inclusion body myositis. Curr Rheumatol Rep, 14, 244-251
Summary completed by Suzan Fischbein, LCSW
Coordinator, Myositis Support Group at HSS
Edited by Nancy Novick