Bhuta suggests asking your doctor about physical therapy, including water therapy, which research shows can help control pain and improve symptoms and quality of life among people with M.S.1 “I go to physical therapy more often than normal and it has helped me stay off the muscle relaxers,” Bhuta says.
Cubero says speech therapy, cognitive behavioral therapy, and occupational therapy have all been tremendously helpful in managing her fatigue and cognitive symptoms, but she says these therapies weren’t offered until she asked about them. “I’ve learned that in order to take control over my medical care, I had to advocate for myself,” she says.
Azure Antoinette, 39, says one of the most important things she’s learned in the past decade of living with M.S. is the importance of approaching symptom management holistically, factoring in things like exercise and diet, on top of choosing the right medication.
“I encourage newly diagnosed M.S. warriors to speak up—not only to discuss what medication may be best for you but also ask your doctor for tips and resources to help with everything else that comes with living with a chronic illness,” Antoinette tells SELF.
4. Can I exercise?
Staying active was a top concern for dancer Courtney Platt, 34, after her M.S. diagnosis. “Anyone going through this journey should ask whether they can stay active, if there are limitations they should consider, and the benefits of staying active for their health,” she tells SELF. Platt’s neurologist let her know she could continue dancing, and movement has played an important role in keeping her body, mind, and soul strong since her diagnosis.
Research shows that exercise benefits people living with M.S. in many ways, including helping with symptom management and improving quality of life.2 Exercise can help build strength, improve flexibility and mobility, and increase cardiovascular fitness, but you may need to adjust your exercise habits depending on your goals, abilities, and how you’re feeling on any given day.3
Platt encourages working with your health care team to determine how much movement makes sense for you, and to listen when your body tells you to rest. “Know when you need to push through and know when you need to pause,” she says.
5. Will anything make my symptoms worse?
Sometimes M.S. symptoms can be triggered by seemingly simple things like stress and heat. Bhuta used to be able to spend tons of time in the sun but now loses energy if she gets too hot. Knowing that heat is a big trigger for her, she now uses cooling towels and wears a big hat to block the sun and prevent overheating. “Ask your doctor about what is likely to trigger your symptoms and what you can do to alleviate them,” Bhuta says.
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At the time of Bordelon’s diagnosis, her job as a medical surgery coder required long hours and a ton of computer time. But she had no idea that all that screen time (and the eyestrain that comes along with it) and the increased stress of working long hours would make her M.S. symptoms worse. “Had I known that staring at the computer screen would cause additional stress on my body and ultimately worsen my symptoms, I would have scaled back on my workload while I was finding the right treatment to manage my M.S.,” she says.
6. Is there anything I can do to feel more prepared to deal with my symptoms on a day-to-day basis?
You’re not alone if you feel worried and overwhelmed after an M.S. diagnosis. To alleviate some of that anxiousness, ask your doctor what you can do to prepare for symptom flares and to manage your condition on a daily basis. “Are there ‘just in case’ medicines they can prescribe? Is there support equipment that you can have in your house, like shower chairs and handles, canes, and walkers? Whatever you need, ask for it,” Bhuta says. If you find certain tasks have become more difficult, let your doctor know, and ask them what might help.
7. How can I connect with others who have multiple sclerosis?
You may feel alone and isolated after being diagnosed with M.S., but there are many other people out there feeling the exact same way who are also looking for some support. Ask your doctor how and where you can connect with people who have M.S. There may be a support group in your area, or you can connect with people on social media or join an online support group.
“I highly recommend getting involved with the M.S. community because it will help you feel more normal and give you the comfort you need,” Bhuta says. “I spent a lot of time on the MS Society forums, and they will even pair you up with someone who has been diagnosed that you can talk to about your journey.”
Bottom line: Know that it’s completely acceptable to advocate for yourself and ask lots of questions. “You’re not in this alone and the only way people know how to help you is if you speak up,” Bhuta says. “You allow people to see what you’re experiencing only by vocalizing it. Speak up often—it will be your greatest ally.”
Sources:
- Evidence-based Complementary and Alternative Medicine, Hydrotherapy for the Treatment of Pain in People With Multiple Sclerosis: A Randomized Controlled Trial
- The Lancet Neurology, Exercise in Patients With Multiple Sclerosis
- Sports Medicine, Exercise and Multiple Sclerosis
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Source: SELF