MS Patient, Ph.D.: Exercise in MS: Good or Bad?

Exercise and I have a love–hate relationship. We weren’t always like that. From my earliest memories, we were best friends, spending our days together, choosing each other over other activities. Well into my 30s, exercise and I were tight, and I felt like I just couldn’t live without it. In childhood, I ran track and played softball and spent part of pretty much every day running or swimming or hiking or throwing and catching a ball.

And then something started in 2007 that introduced trouble into our relationship. What once was easy for me—like walking 3 or 5 or 7 good miles—became a struggle. I’d start out fine but by the end would be lurching or waddling like a slow-mo monster caricature from an Ed Wood film. Exercise, especially in Texas heat, made me feel like I’d pulled a plug on the drain holding in my energy, letting it all slip away. It fired up paresthesias and Lhermitte’s, and if I really overdid it, I could count on writing off the next two days to deep fatigue.

I still love exercise and need it psychologically and physically (if you consider those two separate things) on a regular basis, but our relationship has changed. Now, I’m not sure I can trust even basic activity like walking not to hurt me more than it helps, at least in the short term. And although I remain in limbo land, plenty of MS patients—and physical therapists—share my equivocal outlook.

So I was pleased to see a recent systematic review of whether exercise is associated with more relapses or adverse events in people with MS. Unfortunately, the review didn’t answer the questions it alleged to address, in part because so little literature exists that looks at carefully controlled exercise and the rates of relapse or adverse events. The review authors concluded that there was no association, but they reported no statistical values to support that conclusion. Furthermore, the exercises and outcome measures in the studies they examined were so variable, there’s no way to draw any defensible conclusions one way or the other.

That leaves my relationship with exercise unresolved—and many others are with me in that boat. Patient boards are littered with discussions about how much is too much and what’s best. I talked with Austin-based physical therapist Raquel Currah about her approach to exercise with her clients who have MS. She expressed frustration about the lack of hard data regarding relapse and adverse events for this population, telling me, “That there are not a lot of really good studies done that address that fact makes me question, ‘Is what I’m telling [my patients] actually true?’ ”

What does she tell her patients? Noting the wide variety of exercises that studies examining this question describe, Currah said that it’s important for people with MS to make sure they’re not exercising to the point of extreme muscle fatigue and end up needing a lot of time to recover. “I really preach that they need to use the concept of energy conservation, that they have enough energy to get done what they need to get done throughout the day,” she said. I can relate to that, indeed, on days I feel my energy rushing down the drain.

Mary Ellen Vore, a physical therapist and MS-certified specialist and associate clinical professor at Nazareth College, whose own work has examined exercise in MS, has found that exercise done right can help with fatigue. Vore estimates she’s worked with about 280 MS patients in the last few years, and in an exercise-and-MS study her group completed, the MS patients showed measurable improvement in objective tests like the 10-m walk, in which their gait speed increased in the time they engaged in an exercise regimen. “We did quality-of-life measures, subjective tests, too,” Vore told me. “They did improve in thinking that they improved in the fatigue factor.”

Acute fatigue can be one outcome of a pseudoexacerbation, the short-term effect of exercise or overheating that brings on symptoms that resolve with cooling down or rest. Even if genuine relapses aren’t more frequent with exercise, Currah still wonders about the tangible and intangible effects of pseudoexacerbations. “If there’s a transient decrease in function, if that sets them up for a fall, that leads to other types of injuries as well as depression and frustration,” she told me. “Even if they say it’s just a transient attack and maybe a decline in symptoms, I feel like that puts them at such a higher risk of adverse events. … I wouldn’t want to risk that.”

And of course, there’s the question of which kinds of exercise are preferable. Vore told me that her group focuses on muscle strength and balance. “A lot of [patients] have hip weakness and such,” she said, and “we zero in on where their weakness is and we work on that area.”

"But Currah's got a client, she said, who "does boot camp outdoors and says the heat doesn't bother her, but I'd like to be able to guide her with evidence."

It seems to me that getting that evidence will require careful, controlled studies that monitor relapse and adverse events in an exercise intervention group and a control group. The population needs to be large and the exercise needs to be carefully controlled, as well, to reduce variability. Across trials done to date, the exercise regimens reported have ranged widely from strenuous to low-impact, and there’s just no way to tease out what’s harmful or not for the MS patient. Currah said the same when I talked with her. “It’s so variable for the MS population, how they present, so it is hard to get a good group to study,” she said. “That’s why it has to be a huge cohort of people so you can see the trends.”

While we await that outcome, it seems that my only option, given my need for daily exercise, is to keep waddling my way through my love–hate relationship with it.

Key open questions

• How much exercise is too much for a person with MS?
• Are some forms of exercise better choices for someone with MS?
• What are the risks of pseudoexacerbations brought on by exercise?
• What is the role of fatigue and exercise in MS, and how can a person with MS balance it?

Disclosures and sources of funding

None of the sources have a conflict of interest to declare.

Read other MS Patient, Ph.D. blog posts.