Multiple Sclerosis Self-Care Secrets for Thriving Every Single Day

We're not going to tiptoe around the truth here: Living with multiple sclerosis (MS) is hard.

In the long term, your life completely changes once you receive an MS diagnosis. Suddenly, seeking help and listening to your body become mandatory, all the while managing day-to-day issues like fatigue and flare-ups.

So when you hear the term "self-care," it's easy to dismiss it as a luxury that doesn't apply to you. Nothing could be further from the truth. If you're living with MS, then you deserve to engage in self-care. It may look different from occasional spa days and weekly bubble baths, but it's no less critical to your survival.

What self-care actually means when you have MS

Engaging in self-care, especially if you have MS, isn't a selfish act. Quite the contrary, it's a vital part of managing your disability, which in turn will allow you to thrive.

Brenda Snow, a patient advocate living with MS and author of Diagnosed: The Essential Guide to Navigating the Patient's Journey, says that self-care "always starts with what my body is telling me." It's also important to acknowledge that MS will look different depending on the day, and how you are feeling will determine what your self-care looks like, whether it's physical and/or emotional.

On a day-to-day basis, Snow focuses on "getting adequate, quality sleep, conserving my energy, exercising, and, when I have the strength for it, dancing every day." Dancing brings her joy, which is part of her overall self-care. "I do my best to find the joy in every day, even when I do have a flare-up. It's that positivity that reminds me that I am not my disease. I have MS, I am not my MS."

Does exercise help multiple sclerosis?

Yes, exercise does help multiple sclerosis, but it's common for people with MS to feel tired and weak, which can discourage them from staying active. Snow eventually developed a workout routine that includes reformer Pilates (an example of an adaptive exercise — a workout that can be adapted to people with physical limitations, like chair yoga), strength training, and walking one to three miles a day.

According to the Mayo Clinic, the key to exercising with MS is moderation, and working with either your healthcare provider, a physical therapist, or a fitness professional to help create a workout routine with adaptive exercises. Several factors to keep in mind are the rise in core body temperature, which can exacerbate MS symptoms, and the amount of time spent exercising. Swimming and water aerobics are recommended for people with MS because there is less risk of overheating.

Above all, exercise works for people with MS only when they listen to their bodies: "One day, I may walk three miles," says Snow. "Another day, it may look more like one mile. The point is, I move my body while respecting its boundaries. You'll know what you are capable of."

Diets to help multiple sclerosis

According to the National Multiple Sclerosis Society (NMSS), there isn't yet enough evidence to prove that any specific diet directly benefits MS. However, eating healthy can still help people with MS, as maintaining a well-balanced diet is essential for long-term nervous system health. NMSS experts generally recommend home-cooked meals built around colorful produce, lean proteins, healthy fats, and whole grains, while limiting processed foods and added sugars.

Snow, for example, shifted her diet to focus on "higher intakes of lean proteins, vegetables, and whole grains." As for popular eating trends like the Mediterranean diet, which emphasizes plant-based foods and healthy fats, she says she has friends with MS for whom it "worked wonders."

There's also the very real truth that MS fatigue can often get in the way of meal prepping. "The key is to follow a plan that won't deplete you of your energy," advises Snow. Instead of bouncing from fad diet to fad diet while managing a chronic illness, one of the best things you can do is work with a dietitian who understands MS. These nutrition professionals can help you meet your diet and health goals with methods tailored to your own needs.

Does a gluten-free diet help multiple sclerosis?

As already established, no one diet can directly help MS, and that includes a gluten-free diet. According to a study published in the January 2019 issue of Multiple Sclerosis and Related Disorders, there is no conclusive evidence that gluten affects MS, though that doesn't mean going gluten-free can't have a positive effect. There just isn't enough data on the subject yet.

Does Ozempic help multiple sclerosis?

This is a complicated question, especially given the rise in popularity of GLP-1 weight-loss drugs, and the fact that obesity has been linked to worsened symptoms for people with MS. According to the NMSS, extra weight can contribute to chronic inflammation, immune system changes, and co-existing conditions like hypertension, diabetes, and cardiovascular disease. At the same time, GLP-1s are considered safe and tolerable for people with MS, and can help with weight loss.

"The GLP-1s are gamechangers for MS patients who have gained a lot of weight from their medications," observes Snow. "Regardless, I always recommend that patients have one-on-one conversations with their doctors to discuss their health concerns and determine if these therapeutics will help manage or improve their MS symptoms or the side effects of their medications."

However, there is not enough research available designating GLP-1 medications as a treatment for MS. If you have MS and your healthcare provider recommends a GLP-1 like Ozempic for Type 2 diabetes or weight management, that's one thing. But at this moment, GLP-1s are not suggested treatments for MS.

Does weed help multiple sclerosis?

Going the cannabis route can help alleviate certain common MS symptoms, specifically pain, spasticity (where certain muscles contract all at once), sleep issues, and bladder problems. According to a May 2022 study on the efficacy of cannabis on MS-related symptoms, CBD, one of the active ingredients in cannabis, has been shown to reduce stiffness, discomfort, inflammation, exhaustion, and depression in MS patients, resulting in increased mobility. The study also found that CBD has pain-regulating and anti-inflammatory effects.

THC, another ingredient of cannabis, is the psychoactive component that causes the intoxicating "high" synonymous with marijuana. This element can help treat chronic pain due to its anti-inflammatory nature as well.

Since the FDA hasn't approved cannabis as medicine, but many states have made cannabis use legal, you will need to research your state's laws regarding marijuana before exploring this treatment option. If cannabis is legal where you live, speaking with your doctor about obtaining medical cannabis for symptom management and dosing guidance is a good place to start.

Does red light therapy help multiple sclerosis?

Red light therapy, also called photobiomodulation, is an emerging treatment primarily used to treat certain skin conditions using low levels of red light. In recent years, research has suggested that it can also help reduce MS-related inflammation, as it increases cell production by stimulating the mitochondria, which can help promote healing and lessen inflammation.

Snow not only uses red light therapy but "highly recommends" it. "Not only has it helped with my MS, but it's also improved the quality of my skin and mental health," she says. A July 2022 study in the Journal of Lasers in Medical Sciences concluded that red light therapy can be considered a "novel and promising treatment" for MS patients. It's always a good idea to check with your healthcare provider before beginning any new treatment, and worth noting that red light therapy is typically out-of-pocket — so discussing whether it's the right fit before investing makes sense.

Multiple sclerosis help at home: Building your support system

You know what's one of the best forms of self-care for someone living with MS? Accepting help. And not just physical help — "emotional support teams are just as important," says Snow, "and they don't have to be with someone in your house." Whether they're like-minded patients you can share experiences with, or friends and family members you can be open and vulnerable with, these people will make the difference between merely surviving and truly living.

"Remember," says Snow, "leaning on these people for support isn't a bother. It can actually be a gift and an incredible way to build a connection with people that goes beyond your diagnosis."

On the practical side, if you qualify for any at-home services funded by your state, healthcare plan, or community, it's worth researching — it never hurts to ask, and doing so could save you significantly. Snow also encourages saying yes more often when friends and loved ones offer to help. "Not only can saying yes to others deepen your connections with family, friends, and your community, but you can also save yourself from spending unnecessarily."

If you find yourself in a position where you cannot manage without professional assistance, Snow suggests "prioritizing what will help you live a better quality of life and start there."

Energy management: The ultimate MS self-care skill

MS fatigue is no joke, which means energy management needs to be a key element of your self-care plan. One way to manage your energy is a pacing strategy known as the spoon theory: spoons represent units of energy, and every task of the day costs a spoon or more. Say you start the day with 10 spoons — you then determine how many each task requires (getting out of bed = 1 spoon; taking a shower = 2 spoons) and plan accordingly.

"The two best ways to manage your energy with MS are to set boundaries and listen to your body," advises Snow. "Your body's signals will let you know what you are capable of doing, and that can fluctuate from day to day." And sometimes, no matter how well you conserve your energy, the only task on your schedule will be rest — because rest is just as productive as crossing everything off your to-do list. This is the time to embrace the art of saying no and focus entirely on your physical and mental well-being.

Mental health self-care with MS

Depression and anxiety are quite common among people living with MS. While this is not due to any personal failure, it is critical that "MS patients build mental fortitude and make that their superpower," says Snow. "If you don't get a hold of your thoughts, you'll easily slide into the 'no hope, no choice' category."

Obtaining mental health services can help build that fortitude, which Snow says can "train your thoughts toward a hopeful narrative." Mental health treatment, she adds, "can help with the physical effects of MS, too. When I didn't prioritize my own mental health, it usually caused MS flare-ups."

If you're not sure where to look for MS-competent therapists or peer support groups, Snow recommends starting with the National Multiple Sclerosis Society. "They're a great resource that can help people connect with support groups, online communities, and medical and emotional support."

Creating your personalized MS self-care toolkit

No one's MS self-care toolkit will look — or should look — identical. Snow generously shared her own as a starting point:

Boundaries: "It's essential to set physical and mental boundaries to optimize your energy. MS strips you of energy, but it's within those boundaries that you can protect your energy and show up for the things that matter most."

Music: "I dance every day! I turn the music on in my house and dance, and that reminds me that yes, I have MS, but I still control my body, my mind, and my joy."

Humor: "Humor is so powerful; it prevents the heavy, dark emotions from eating away at your soul. It adds levity and lightens the burden so that the cross you bear doesn't feel quite so intense. Of course, it's a balancing act — plenty of times, the situation is serious, requiring your full attention. But other times, your self-deprecating humor can help you embrace the irony in awkward situations and put your companions at ease."

When self-care isn't enough: Advocating for medical support

While self-care is a vital component of living with MS, it is not a replacement for medical treatment. You can engage in self-care daily, but none of that will matter if you have crippling fatigue and unbearable pain. That's when you need to contact your neurologist.

"You, as a patient, need to advocate for yourself, with whatever energy you can muster," says Snow. "Listen to your gut and raise your voice. It's your right."

Snow emphasizes that living with MS "means you have to embrace being a squeaky wheel and demand the level of care you need." If all you're being offered is a telehealth appointment, but you're dealing with extensive flare-ups, it's time to push back and call until you get an in-person appointment. As neurologist Dr. Mark Gudesblatt explains: "When self-care isn't enough, if the symptom is important for you to discuss with the neurologist, it is important for them to listen and address your concerns. Proactive evaluation of concerns, identifying root causes, and addressing them is critical."

Unfortunately, the only patient advocate available within the healthcare system these days is you. "Because if you don't show up for yourself," says Snow, "no one else is going to show up for you."

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