let’s get physical

Again, thanks to Mark Manago for his excellent talk about Exercise & Myositis at our last meeting! His presentation was specifically related to IBM patients and exercise, but I feel that what he said pertains to all kinds of myositis (since the major muscle groups are affected in all types of myositis patients, with the exception of the finger flexors [grip] and some of the IBM-specific weaknesses listed below).

Mark created a handout in outline-format, if you would like a hardcopy you can pick one up at one of our 2014 meetings or email us (myositisco@gmail.com).

An overview of Myositis weakness includes:

  • Quadriceps (sit to stand)
  • Distal Lower extremity (LE) muscles (foot drop, tripping) usually with faster progression than Upper extremity (UE) muscles although UE may be higher in PM/DM patients
  • Muscle Atrophy
  • Potential for Low Quality of Life (QOL)
  • Finger Flexors (grip) – IBM specific


We know that progressing weakness is the natural course of IBM, Mark’s supposition was that since there are no medications yet (the new medications being discussed for IBM are promising but unproven, click here for the video on BYM338) the next natural thought is “Can exercise help”? If not as a cure, at least as a prevention of further decline.

Even if exercise can’t change the course of myositis, there are many benefits such as preventing Cardiovascular (CV) disease by lowering hypertension, diabetes rate, ischemic heart disease, even osteoperosis (since LE loss can lead to lack of weight bearing/resistance that is necessary to maintain good bone density). Exercise can prevent disuse atrophy of other supportive muscles, prevent decline in function (preventing future falls), prevent contractions and muscle tightening (reducing pain), prevent deconditioning and the decline in ability to walk or tolerate community mobility, and can certainly improve mood (and who with myositis couldn’t use a little mood elevator now and again???)

Mark pointed out to the group that exercise with inflammatory myopathies has historically been questioned and feared. Afterall, the doctor’s first and foremost vow is “Do No Harm”. Mark then cited several research documents and clinical studies of Exercise & IBM, with a brief description of the trial and outcomes. Here they are in chronological order:

1997 Spector, click here. Study of 5 patients, using “progressive resistance exercise”. Results: no change in fatigue, no complaints of soreness/pain, all patients were able to lift more weight, no increase in inflammation process through lab studies, no change in muscle testing (strength), no increased muscle size.

2002 Arnardottir, click here. Study of 7 patients, using “home exercise program” (HEP). Results: program tolerated well, no changes in lab values, no changes in muscle size nor strength, confirmed results of Spector study with even more frequent exercise though not nearly intense enough, showed that exercise will likely prevent or slow loss of strength at least temporarily.

2007 Johnson, click here. Study of 7 patients, using 16-week individualized HEP. Results: significant improvements in isometric strength were demonstrated in all muscle groups (shoulders, leg, grip) tested and were maximal in hip flexor muscles. In addition walking 30m and stair climbing 1 flight times improved in all patients. More frequent exercise may improve strength, walking, and stair climbing ability in a wide range of disease severity with no adverse effects.

2009 Johnson, click here. Study of 7 patients, using 12-week aerobic exercise program. Results: Aerobic capacity improved 38%, 4 muscle groups improved significantly in strength, no changes in stair climb or 30m walk, no changes in lab values, well tolerated. Less frequent resistance exercise did not change function (walking, stairs), aerobic capacity can be improved with a 12-week stationary bike program, no adverse effects from adding aerobic exercise.

2013 Jones, click here. Article currently in process of being published.

All references are listed in this table


The take-away from all the journal documents is that most trials are small and current research is looking to improve evidence. What is the ideal dose/intensity/frequency of exercise for myositis patients? Do different stages of the disease benefit from different exercise? Is exercise safe and effective for long term application? Obviously the goals are to have larger and more controlled trials, find meaningful and functional changes due to incorporating exercise into our daily lives, to gauge patient percepetion and quality of life gained by increasing exercise, and to help with balance training and fall prevention.

Mark stressed – as we will ALWAYS stress – that it is incredibly important to partner with your doctors and health care professionals to create an individual program!!! If you are interested in pursuing an exercise program for myositis make sure to use a trained physical therapist who can customize your program based on:

  • Stage of disease
  • Level of function
  • Comorbidities
  • Degree of weakness and/or deconditioning
  • History of exercise
  • Areas of weakness
  • Access and support



The most important thing is that you safely and correctly exercise – don’t get yourself hurt trying to get yourself healthy! Skip the personal trainers too – trainers will push you beyond your capacity because they do not know the limitations and specific muscle issues of someone with myositis. Sorry, Gym Rats need not apply!

To find a physical therapist in your area, click here, or ask your neurologic or myositis specialists for referral.

Screen Shot 2013-11-11 at 11.51.32 PM


One thought on “let’s get physical

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s