Multiple sclerosis (MS) is an unpredictable neurological disease. No two people will have the same exact symptoms. When you have this chronic condition, symptoms can range from mild to severe. You could get problems such as fatigue and weakness, blurry vision, mood disorders, muscle spasms, or balance and focus issues.
Depending on the type of MS you have, your symptoms may flare up from time to time, or you may get new symptoms. The unpredictable nature of MS can be challenging, especially if you have to juggle a hectic schedule at your workplace, your school, or in your home life, like parenting and household chores.
Emily Reilly, 33, has firsthand experience. The Alexandria, VA, native, who works as a health care provider engagement manager at the National MS Society, was diagnosed with relapsing-remitting MS when she was 17. At the time, she was an active high school senior and an athlete.
“I was a soccer player with dreams to go play collegiate ball, and I had signed a soccer scholarship [a month] prior to my diagnosis,” she recalls.
She had noticed leg weakness and overall fatigue. An MRI scan revealed lesions on the spine. But an MS specialist put her on the right treatment plan and encouraged her to follow her soccer dreams and find ways to adapt to life with MS.
“He told me, ‘Don’t let me stop you.’ And so, I went on to play college soccer. I played all 4 years. I was actually an all-American goalkeeper, which was really cool,” Reilly says.
But it wasn’t easy. People who have relapsing-remitting MS tend to have periods of new or worsening symptoms followed by periods of partial or full recovery. This is called remission. Symptoms can strike at any time and throw a wrench in your routine or schedule.
It took quite a bit of strategy and effort on Reilly’s end to adapt to living with MS: prepping for occasional flare-ups and dealing with the constant fatigue. “During that time, I really learned how to manage my energy with being a college athlete and a student, and then also learning how to live with a chronic illness that’s so unpredictable.”
Reilly also credits exercise for helping her stay fit, healthy, and active. In fact, her passion for exercise and its impact on her well-being led her to become a certified personal trainer. She teaches modified exercises for people within the MS community.
MS is an autoimmune condition, which means the body’s immune system attacks its own tissues. Its exact cause is unknown, but it happens when the immune system becomes disrupted and destroys the fatty substance called myelin sheath that coats and protects nerves in the brain and spinal cord, which makes up the central nervous system. This causes communication problems and confusion in the messages transmitted between the brain and the rest of your body.
Depending on the location of the attack, it may produce different neurological symptoms in each person. This is what makes “MS highly individualized” says Robert Bermel, MD, director of the Cleveland Clinic Mellen Center for Multiple Sclerosis.
MS symptoms can vary widely and range from mild to severe. Fatigue and mood issues seem to be the most common complaints. These “invisible symptoms” can be disabling, make it hard to do daily tasks, and can affect productivity at work or home.
Research shows that the socioeconomic impact of MS is high. For people living with this condition, reduced work hours, sick leave, poor work performance, and early retirement are common. The lack of energy carries over when you’re trying to run errands and balance the demands of your home life, too. Sometimes, you may just not have enough energy to get through your to-do list for the day.
“I think that the symptom of fatigue can be described as sort of like a gas tank with limited fuel in it. It’s like once you use it up, you’re sort of wiped out,” Bermel says.
Common MS symptoms include:
Less common symptoms include:
While MS symptoms can definitely disrupt your mood and your day, symptoms may vary in intensity, and not all of them are concerning. This is especially true if you’ve been newly diagnosed with MS.
“The most important things to figure out from the get-go is helping patients with MS to differentiate symptoms of a new MS relapse versus fluctuations of existing symptoms, which can certainly come and go and have good days and bad days. And those sometimes turn into ‘pseudo relapses,’ but I like to call them symptom fluctuations,” Bermel says.
If it’s a symptom you’ve never had before, it’s normal to feel anxious about it. But Brian Barry, MD, a neurologist and director of the MS clinic at MedStar Washington Hospital Center in Washington, DC, says it’s better to wait around 24 hours to see if the symptoms get better or worsen.
“Anybody can have numbness when they sleep on the wrong arm wrong or something that goes away after a few minutes or so. But if you’re having a new symptom, something you’ve never had before, or something that’s worse than you’ve ever had before, and especially if it’s lasting for more than a day, that’s definitely something that I would encourage people to talk with their neurology provider,” Barry says.
Certain things can also trigger a flare-up and make you feel worse. This can include things like stress, fever, urinary tract infections, overheating, or viral infections. Your symptoms may ease when the trigger subsides.
Experts say it’s best to wait and feel it out. This way, you don’t have to drop everything on your schedule on a moment’s notice. This can save you the hassle of a trip to your doctor’s office each time you notice a flare-up.
The unpredictability of MS can be frustrating and may complicate your day-to-day life. But there are things you can do to manage your physical and emotional health in the long run. They include:
Conserve your energy. When you start your day, you may have limited energy. Use it earlier in the day and for tasks that are on top of your priority list. And Reilly says it’s OK to cut yourself some slack if you’re not able to hit everything on your to-do list.
“I think it’s important to give yourself permission to slow down, to say no. I think that’s super important to give yourself grace. Like maybe today I can’t do laundry, cook dinner, and meal prep or whatever,” she says.
Take rest when you need to. “We can manage it just by setting aside 15 minutes every 2 hours for physical and mental rest. That can be very helpful in avoiding things like overheating and dehydration,” says Barry.
This can help you feel recharged to get through your next task.
Get some exercise. Reilly notes that exercise not only boosts her physical health, but her thinking skills as well. She also stresses doing neuromotor exercises. This type of exercise can help with hand-eye coordination, agility, and balance — all of which help people with MS.
Doing this can be as simple as throwing and catching tennis balls, Reilly says. “Everyone can do it.”
Eat healthy. Eating a balanced and healthy meals regularly can get you the nutrition and energy you need to get through your day. But it’s best to avoid hot or spicy meals that can trigger a rise in body temperature.
If you’re not sure how to get started, talk to a dietitian to help you come up with a meal plan that works for you.
Communicate your limits at work. As MS can affect your productivity at work, it’s important to clearly communicate any limits you may have to your manager or co-workers. This can help manage expectations.
Barry says this can include “strategies that work to arrange for accommodation to have more frequent breaks.”
It can also include options like talking to your human resources department about remote work to accommodate your needs.
Don’t hesitate to ask for help. Chores around the house or other daily tasks may seem too much when you’ve barely got any energy. Ask your family and friends for help when you really need it.
“If you’ve got kiddos, maybe start having them help you around the house to help with some chores or really communicating with your spouse. It’s super important to let people know where they can help and step in,” says Reilly.
Find the treatment plan for you. While there’s no cure for MS, disease-modifying medications and other treatment plans can help you manage the condition. Ask your doctor what’s right for you.
“[If MS is] affecting someone’s quality of life, we have medication that we commonly use for their pain, if it’s difficulties with walking, then we’ll recommend the trial of physical therapy,” says Barry.
Occupational therapy is another option. Occupational therapists work with any limits you may have in terms of work or home life and can help find ways to adapt to living with MS in the long run.
But it’s important to keep in mind that MS affects each person differently. What works for one person may not always work for you. It’s best to work with your health care team to find solutions to manage your schedule.
“You can’t write the rules of someone else’s MS; you really have to personalize the approach and the management of it. That’s one of the things that’s really challenging about MS — the unpredictability and the heterogeneity of it. It’s a little bit different in everybody, and everybody makes their own story with MS,” Bermel says.
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