If it weren’t for a diagnosis of multiple sclerosis, Bryan Kent may never have learned to listen to his body. The triathlete and runner had been straining his body for some 20 years and even toyed with going pro as a triathlete. And then one day in 2016, he woke up with pins and needles in his hand. Over the course of the day it spread throughout the left side of his body and to his face.
“I thought, ‘This isn’t good,’” recalls Kent, now a Boston-based chiropractor and acupuncturist.
He went to the emergency department convinced he was having a stroke. But MRI scans revealed lesions in Kent’s brain, and Kent knew that meant tumors or multiple sclerosis (MS).
Kent, who lived in Rochester, New York, at the time, was diagnosed with multiple sclerosis, an autoimmune condition that affects the brain and spinal cord. He was 30 years old, and for the past six years has not experienced any other symptoms. He recently got back into training, focusing on running and strength work. In April he will run the Boston Marathon with the McCourt Foundation, an organization that supports people affected by neurological conditions, like multiple sclerosis.
Symptoms of Multiple Sclerosis
There are several different types of MS, but the most common is relapsing/remitting MS, explains Marcelo Matiello, M.D.,M.Sc., vice chair for clinical affairs for the department of neurology at Massachusetts General Hospital (MGH) and a senior neurologist for the MS Unit at MGH in Boston.
Like with many autoimmune and neurological conditions, the exact cause of MS is unknown.
“We know it’s a complex disease that happens due to the interaction of genetic susceptibility and environmental triggers, and it happens through attacks of a person’s immune system,” Matiello explains.
Ultimately, the myelin sheath, an insulating layer around the nerves, is attacked and deteriorates. When that happens, the electrical impulses that are supposed to transmit quickly along the nerve cells slow down, causing symptoms, according to the U.S. Library of National Medicine.
These symptoms vary person to person but often include:
- Numbness and tingling
- Vision problems
- Dysesthesia (a squeezing sensation around the torso, also called an MS hug)
- Walking difficulties
- Spasticity (feelings of stiffness and involuntary muscle spasms)
Symptoms, Matiello says, can present over a period of several days.
“You may feel your leg dragging and think you’re just tired,” he says. “But following a night of sleep when you feel rested and during exercise you still feel it, that’s when someone might come to the ER or call their primary care doctor.”
Emily Reilly, manager of healthcare provider engagement for the National MS Society (NMSS), lives with MS, and she calls many of the symptoms invisible, which can make it difficult for people to understand the struggles people living with MS have to manage.
Diagnosis and Treatment
There isn’t one particular test physicians can run to diagnose people with MS. Instead, people will work with a healthcare team, including a neurologist, to rule out other conditions via blood tests, and undergo a neurologic exam and imaging.
Over the past two decades treatment for MS has come a long way, with options that include oral pills, injectable medications, and infusions.
These medications are known as disease-modifying treatments, and they’re designed to decrease the likelihood of relapses and disease progression, explains Eric Klawiter, M.D., M.Sc., a neurologist at MGH and the director of the multiple sclerosis and neuromyelitis optica unit.
Once his patients have found a successful disease-modifying treatment, Klawiter, an associate professor at Harvard Medical School and an avid runner, will prescribe exercise to combat symptoms associated with MS, like fatigue.
“Exercise can promote strength and fitness, it helps compensate for neurological symptoms, and has profound effects on mood and fatigue,” says Klawiter, who treats Kent. (He did not discuss Kent as a patient.)
Running and Multiple Sclerosis
There is no question that regular physical activity is instrumental in managing MS, Matiello says. It has been shown to improve cardiovascular fitness, strength, bladder and bowel function, feelings of fatigue, mood, cognitive function, bone density, and flexibility, according to NMSS.
“Research has shown us that exercise is safe and beneficial for MS when it comes to quality of life, and helping with prevention of symptoms and progression of the condition,” says Reilly, a certified personal trainer, who, despite—or perhaps, in spite of—her MS diagnosis at 17, played collegiate soccer on a scholarship and was named an All-American goalkeeper.
In fact, a study published in Nutrients last November suggests that lactate threshold training—training at or just above your lactate threshold heart rate—coupled with a balanced diet might improve inflammation, neural plasticity—the ability for neural networks in the brain to adapt—and neuroprotection in those with MS.
She points out that the exercise guidelines for people living with MS don’t really differ from the Physical Activity Guidelines for Americans: 150 minutes of moderate-intensity exercise per week.
“But our language is a little different,” Reilly says. “We recommend 150 minutes per week of lifestyle physical activity or exercise.”
That means that chores and playing with your kids counts as exercise. People living with MS often struggle with fatigue and rely on the “spoon analogy,” which says every person is given five spoons’ worth of energy per day. If getting your kids ready for school, walking the dog, and working for eight hours take up 4 spoons by 5 p.m., what are you going to do with that fifth spoon?
“We expand on the idea of what exercise is,” Reilly says of the NMSS guidance.
Reilly uses her experience managing MS in her work as a personal trainer, teaching exercise classes to others living with MS. She emphasizes the importance of movement and modifications as necessary. For example, if 30 minutes of continuous exercise isn’t achievable at a given time, Reilly recommends splitting it up into three 10-minute sessions, or even six five-minute sessions. Or, instead of focusing on a target heart rate or pace during a run or workout, move by effort.
“Give [yourself] permission to slow down,” Reilly says. “Make changes so you feel successful, not defeated. If we feel defeated we’re not going to stick with it.”
Some days, a runner living with MS might decide stretching is the best form of movement, and that can be extremely beneficial for symptoms like spasticity, Matiello says.
For his part, Kent, who prior to his MS diagnosis didn’t know how to slow down, says he’s okay with whatever performance he has on a given day.
“I teeter between giving myself grace—you’re not the same athlete you were 10 years ago, pre-MS—and not making excuses—just because you have MS doesn’t mean you can’t still do these things,” he says.
He also acknowledges that he needs to be looking at the bigger picture.
“I haven’t had MS for that long, just five years, and I’m likely going to have it for the rest of my life,” he says. “I tell my athletes they have to learn to make decisions about their bodies if they want a 20-year career. I take that approach with my life now.”
Potential Risks When It Comes to Exercise
While running itself doesn’t pose risks to people with MS or contribute to disease progression, certain symptoms may require people to adjust their goals or workout, Klawiter says. For example, because people with MS might struggle with mobility and balance issues, Matiello recommends taking extra precaution when choosing a running route—avoiding rocky or root-heavy terrain.
People who experience foot drop associated with MS—they cannot lift the front part of their foot—are more prone to tripping, says Reilly. But there are ankle-foot orthoses (braces called AFOs) that can keep the foot up during running.
“Don’t be afraid to use these devices,” Reilly says.
People with MS often experience Uhthoff’s phenomenon—heat sensitivity—during which their symptoms can temporarily worsen in hot and humid conditions. Klawiter explains that heat-related symptoms do not cause more disease activity, and they improve once you cool down.
That said, it’s important to modify workouts to avoid heat exposure, Klawiter says. For example, schedule summer runs in the early morning or late evening when it’s cooler, or head indoors for an air-conditioned workout. Klawiter emphasizes the importance of keeping cold fluids on hand for when symptoms start to present themselves.
Runners can choose their goal race during a time of year or location that will provide a cool morning, Klawiter says. And if symptoms do appear, your best bet, he says, is to listen to your body, slow or sit down, and wait for them to subside.
As Kent, who’s worked closely with Klawiter on the management of his MS and his fitness goals, eyes Hopkinton in a few months, he acknowledges that his diagnosis taught him that it’s okay to not go hard and push every single day.
“Develop a healthy relationship with movement and running,” he says. “Running can be a really wonderful thing so long as you understand there is a lot of give and take. I have to let my body lead my training, not let my mind and goals dictate the terms.”
Resources for Runners With MS:
1. Run a Myelin My Shoes
MS support team that emphasizes the importance of physical activity; the group meets once a year for a run/walk event and organizes virtual events.
2. National Multiple Sclerosis Society Finish MS
A fundraising arm of NMSS that offers endurance bibs, including Boston, New York, Chicago, and Berlin marathons, as well as team support for race training.
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