Myositis and Exercise: Don’t let fear keep you from moving
Updated: 3 days ago
A 3-minute read | Karen Yanelli, PT, DPT, Cert. MDT
If you have myositis, you may worry that exercise will make your muscles weaker, increase inflammation, or cause a flare. When you’re already dealing with weakness and fatigue, it makes sense to question how much you should be exerting yourself.
Here’s what I want you to know: research supports exercise as an important part of myositis care. Programs tailored to the individual have been safe and help improve strength, endurance, and everyday function.
You don’t have to wait until you feel stronger to get started. You need a plan that fits where you are now.
What does the research show?
Researchers have looked at more than whether people get stronger. They have monitored blood tests, muscle biopsies, and disease activity to understand how exercise affects people with myositis.
Across the programs studied, exercise has not been shown to worsen disease activity. Quite the contrary. Studies have found improvements in disease activity, along with strength and endurance.
The Myositis Association supports individually adapted exercise programs.
That doesn’t mean every exercise is appropriate for every person. Your type of myositis, current symptoms, disease activity, and overall health all matter. Those details should guide what you do, how much you do, and how you progress.
This is where working with a physical therapist familiar with myositis will help.
With IBM, maintaining your abilities matters
Inclusion body myositis, or IBM, deserves special attention because unlike other forms of myositis it is not commonly known to present with periods of flare ups and recovery from a flare.
Although the symptoms appear to be slow and progressive in nature, physical therapy, exercise, and practical changes to daily activities are still crucial parts of care. In one small study, participants with IBM who completed a supervised, low-load blood-flow-restriction training program largely maintained their leg strength, while the control group lost strength. The study did not show improvement in the measured physical-function tests. This was a specific supervised program, rather than a recommendation to try blood-flow restriction on your own.
Exercise is not a cure. But maintaining the strength to get out of a chair, walk safely, or manage daily tasks matters.
Getting stronger is one goal. Preserving your abilities is another one and just as important.
Pay attention to how you recover
Some temporary soreness or fatigue after exercise does not automatically mean you’re having a flare.
Persistent pain, exhaustion, weakness that affects function, or recovery that takes much longer than usual needs attention. Let your physical therapist or treating clinician know so they can determine whether your program needs adjusting or you need a medical assessment.
Never push through worsening symptoms. Finding the right amount of exercise includes paying attention to how your body responds afterward.
Start with what you can do
Exercise doesn’t have to begin with weights or a long workout.
It may start with seated movements, assisted exercises, short bouts of cardio activity, balance work, or practicing how to perform transfers. These are useful starting points that can be adjusted as your abilities and needs change.
My advice is straightforward: don’t let fear of a flare keep you from starting an exercise program. Talk with your treating clinician and work with a physical therapist who understands myositis.
Together, you can build a realistic plan to help you maintain and even gain the independence that matters to you.
Myositis physical therapy in New York
Looking for guidance on exercising with myositis? I offer individualized physical therapy in Manhattan and telehealth throughout New York. We can discuss your goals and an appropriate starting point. Appointment requests require confirmation.
Learn more about my background and clinical experience.
Sources and further reading
This article provides general education. Your exercise program should be individualized with your care team, particularly during active disease or with heart or lung involvement.
