Physical Activity with Myasthenia Gravis

New year, new fitness goal? I wish this was so simple for those of us living with Myasthenia Gravis. Truth be told I’ve tried incorporating exercise and physical activity into my routine before the start of the New Year several times. I’d struggle with muscle weakness, fatigue, and eventually, I’d stop working out altogether. With the start of the New Year, I’ve taken a different outlook on my health. I realize now that physical activity is important and possible.

I decided to reach out to someone who’s very knowledgeable about physical activity. Who better to ask questions about this subject than a Physical Therapist? I had the pleasure of interviewing Dr. Briana Sade Scott, a Doctor of Physical Therapy. Dr. Sade is a doctor at Piedmont Atlanta Hospital. She works in the acute care and ICU settings and has previously worked in general outpatient orthopedics. I’m so pleased to share a little about Dr. Scott and her responses related to MG and exercise.

Dr. Briana is originally from a small town in San Bernardino County in Southern California. After graduating from Silverado High School in Victorville, California, she attended Georgia State University in downtown Atlanta for undergraduate studies. After graduation, she moved to Miami, Florida to pursue my doctorate in physical therapy at The University of Miami. Dr. Scott has been married for a little over a year to her husband Craig. In her free time, she enjoys developing her personal brand and blog The Transparent Truth – a safe space for women to keep it real about growing in their pursuit of Jesus, becoming better wives, and dominating at work!

Let’s get into the interview questions. Many of the questions posed were gathered from other people with MG. The answers are direct responses from Dr. Briana Scott.

Have you treated patients with Myasthenia Gravis?

I treated a patient with Myasthenia Gravis on the Cardiopulmonary Progressive Care Unit at Piedmont Atlanta Hospital. She was a young woman who was still coping with mobility challenges associated with MG and also having breathing difficulties as a secondary complication to her MG diagnosis. She was frustrated and sad to the point of tears because she just isn’t able to do the things she used to. I was able to empathize with her and teach her about energy conservation, the role of using exercise to empower her, and the benefits of using assistance with daily tasks as needed to prevent injuries. Internally I did feel several emotions including sadness while treating her, however, I made sure to exude positivity and empathy to help her overcome her present challenge.

Should people with Myasthenia Gravis exercise? Is it safe?

Yes! Individuals with Myasthenia Gravis should exercise and it is safe when structured appropriately and tailored to the person’s individual presentation. In my personal opinion, an individual with Myasthenia Gravis may engage in a regular structured exercise routine after being assessed by a physical therapist to establish a baseline function and determine goals. The exercise program should be designed by a qualified physical therapist and tailored to that individual and their current level of function.

Why is physical activity for people with Myasthenia Gravis complicated?

Physical activity is an important but complicated component of the treatment process for an individual with Myasthenia Gravis. The right amount of exercise is beneficial and can improve the overall strength and function of an individual with Myasthenia Gravis. However, too much exercise can have severe consequences resulting in prolonged relapses of weakness and regressions in function. To further complicate this matter, there is no set of exercise prescriptions that is effective for all persons with Myasthenia Gravis. Exercise must be tailored to each individual and monitored closely to assess their response to varying intensities and carefully progressed to promote improvement in muscle function and strength without causing the onset of abnormal muscle fatigue.

Is discomfort or pain normal after exercise when you have MG?

I would advise that muscle soreness associated with the infamous DOMS (delayed onset muscle soreness) should be anticipated for an individual with Myasthenia Gravis who is starting a home exercise program. However, DOMS should feel like a moderate achy soreness at worst and should only last 1-3 days at maximum. Any pain more severe or that lasts longer than this would be considered an “abnormal” response.

What are recommended exercises, routines, etc. that you recommend for people with MG at home?

In general, I recommend that an individual with Myasthenia Gravis should start with bodyweight exercises, allow 1-2 days of rest between exercises sessions, and exercise at the same time on designated workout days (ex. Monday’s, Wednesday, Fridays, at 10:00 am). I also recommend consulting a physical therapist prior to initiating an exercise program to avoid causing a relapse.

What are safe ways to manage weight with chronic conditions and medication use such as steroids?

Maintaining a healthy diet in combination with a tailored exercise program is the safest way to manage weight gain. It is always beneficial to consult a nutritionist or dietician for specific recommendations, however, using resources such as myplate.gov can be a great way to get started free of charge as long as you’re willing to read, learn, and apply. Monitoring your food intake can also be made fun and easy with apps like My Fitness Pal in order to gain a general sense of your eating patterns and make changes according to the results.

Is pilates safe for people with MG?

Pilates can be safe for people with MG if modified to the individual’s comfort and skill level. Increased rest time between movements and decreasing hold times for positions should be considered. Again, a physical therapist should be consulted to help establish a healthy start to a Pilates regimen.

For MG’ers that are unable to exercise what are recommended alternatives?

Individuals with severe MG should aim to actively participate in their daily activities as much as possible. Participating in functional activities such as transitioning from supine to sitting, from sitting to standing, standing for prolonged periods of time, or walking a short distance inside the home will feel much like exercise. In essence, these activities are exercises for that individual and should be approached as such – that is, with a conservative approach, graded progressions, and plenty of rest. Similarly, these activities should be guided initially by a physical therapist who can teach the individual and family members the safest techniques and energy-efficient ways to participate in daily functional movements.

Any other tips, stories, expert advice, or words of encouragement for the readers?

If you have Myasthenia Gravis, be patient with yourself in this process of healing, and do not give up! Myasthenia Gravis is an outstanding challenge, but it is one that can be mastered. Just as we physical therapists say for pain, I think the same will apply to this condition. “You don’t live with your diagnosis of Myasthenia Gravis, make your diagnosis of Myasthenia Gravis live with you!” You’re the boss and ultimately your quality of life is up to you, not Myasthenia Gravis. If you are a physical therapist or rehab specialist, be patient, adaptable, and willing to experiment with your client. Don’t be discouraged by setbacks or relapses, but instead be willing to learn from your mistakes and always aim to provide the best care possible. And of course, always remember to “do no harm.”