It has been more than 20 years, but Maria Zepeda remembers her first symptoms of myasthenia gravis (MG) vividly. “I was 23 and working for a business consulting firm in Florida when I started having difficulty swallowing,” she recalls. “Then I noticed that my speech started slurring. It took effort to enunciate properly.”
She didn't connect the symptoms at the time. But days later, she was driving back from a company outing one night and began seeing double. “That was really scary,” says Zepeda, who is now 47 and lives in Chicago. At first, she attributed it to a new pair of contact lenses. “I called my eye doctor and said, ‘You guys must have sent me the wrong prescription.’”
But the problem wasn't her lenses. When the double vision persisted, she went to see her ophthalmologist, who referred her to a neurologist. “The neurologist said, ‘You have myasthenia gravis,’” Zepeda says. “I responded, ‘Okay, can you write me a prescription for that, because I have a meeting tomorrow?’ Clearly, I didn't know what was coming.”
Myasthenia gravis is a chronic autoimmune disease in which antibodies interfere with or destroy the neurotransmitter receptors on muscles, resulting in abnormal muscle weakness that affects everything from the ability to chew and swallow to keeping eyelids from drooping. Since the muscles can't receive the signal to contract, they weaken. The condition worsens with activity and improves with rest, says Julie Rowin, MD, FAAN, a neurologist in Westchester, IL, and a member of the medical advisory board for Conquer MG, a patient organization.
As her disease progressed, Zepeda felt weaker and weaker. “If you want to know what MG is like, imagine carrying gallon paint cans that you can't put down,” she says. She was exhausted by the most routine activities. “Anything you do repetitively is a problem,” she says. “Even something like brushing my hair could make me feel tired.”
Years ago, physicians told patients to rest and avoid exertion. “Because a hallmark of the disease is fatigue and weakness, the main emphasis in the past was on conserving energy,” says Dr. Rowin. “This got translated into ‘Don't do much.’ And we ended up with a whole host of other problems as a result.”
One problem was that being sedentary exacerbates fatigue and muscle weakness, says Dr. Rowin. It also can make the weight gain and bone loss associated with long-term use of prednisone—a common treatment for MG—worse.
Other adverse health effects of inactivity, regardless of underlying disease, include an increase in all causes of mortality; a doubling of the risk of cardiovascular diseases, diabetes, and obesity; and a higher chance of colon cancer, high blood pressure, osteoporosis, lipid disorders, depression, and anxiety.
Today the message about activity is more nuanced. “We recognize that patients can exercise and that it can be done safely,” says Dr. Rowin.
People with MG whose symptoms are controlled should be able to reap the benefits of physical exercise, says Anna Rostedt Punga, MD, PhD, professor of clinical neurophysiology at Uppsala University in Sweden and co-author of a 2020 study, published in Frontiers in Neurology, on how exercise helps people with MG. Her research has found that exercise reduces fatigue, improves fitness, and increases muscular function, allowing for a more active life. Physical activity, she says, also boosts mood and cognition.
Dr. Punga suggests following the minimum recommended international guidelines on exercise for healthy adults—150 minutes a week of moderate physical activity.
But even that recommendation needs to be customized, says Dr. Rowin, since MG is known as a “snowflake” disease, meaning no two cases are the same. “Some of my patients take high-intensity exercise classes, and others tell me they can't even walk around the block,” says Dr. Rowin, who advises all her patients to start where they are and build from there.
Since her diagnosis, Zepeda has upped her physical activity well beyond a stroll around the block. A few years ago, she found a personal trainer with the knowledge and sensitivity to help her work hard while monitoring symptoms of fatigue to avoid exacerbating her condition. Thanks to their ongoing weekly Zoom sessions, Zepeda has seen improvements in strength and overall fitness. In addition to meeting with her trainer, she takes gentle yoga classes two to three times a week, walks about 30 minutes four days a week, and recently began cycling. She uses an electric bike that allows her to alternate between leg power and motor power if she gets fatigued from pedaling.
Zepeda says she's lost more than 40 pounds and feels great. She has few symptoms and takes only one or two medications. “I am the before-and-after poster child for MG and exercise,” she says with a laugh. “I feel 100 percent better than when I was first diagnosed.” Her balance is better, she has more energy, and she's stronger. “I can even do push-ups now.”
How to Exercise Safely with MG
For those who are skeptical that physical activity can benefit people with myasthenia gravis (MG), Garry Morehouse, who was diagnosed with the disease in 2017, has this to say: “Exercise has been my savior, my lifeline.” He plays competitive pickleball four times a week, and at age 76 he's still one of the top-ranked players among the 100 or so members of his racquet club. As for his illness: “I have no effects, no symptoms from MG,” says Morehouse, who lives in Midland, ON, in Canada.
With a highly individualized illness like MG, there's no guarantee that others with the disease will be playing competitive pickleball or racing a 10K anytime soon. But there is growing agreement that physical activity is something people with MG can and should be doing. To do it safely, consider these recommendations.
Talk to your doctor. Before you begin any exercise program, discuss your intentions with your neurologist.
Increase gradually. Start slowly. Take an easy walk to the end of the driveway or climb stairs in the house; then build from there. As your fitness and stamina improve, increase the challenge.
Work with a pro. A physical therapist or a certified personal trainer can help develop a regimen that's right for you. Either one should understand that any fitness routine may have to be modified to accommodate disease progression and fatigue. “People with MG will perceive more muscle fatigue in the beginning,” says Anna Rostedt Punga, MD, PhD, professor of clinical neurophysiology at Uppsala University in Sweden, who researches exercise and MG, but “this will decrease, and approximately two to three weeks into the regimen, they will feel stronger and have more energy.”
Attend to fatigue. There is a healthy tiredness that comes from exertion, and there's dangerous fatigue related to MG. Signs of MG-related fatigue are limb weakness and shortness of breath, says William G. Buxton, MD, a neurologist at the Pacific Neuroscience Institute Brain Health Center in Los Angeles. “Such symptoms can be a red flag to rest,” he says. “And if they don't improve with rest, patients should contact their physicians.”
Listen to your body. This advice is particularly true for people with MG, says Morehouse, who in addition to playing pickleball does strengthening exercises at home. “I don't tire very easily, but there are times when I get a little dizzy,” he says. When that happens, “I just stop right on the court. People know, ‘That's Garry. He's had enough.’”
