6. You’re Not Prioritizing Your Sleep Sleep deserves attention and care. Poor sleep can worsen MS fatigue and other symptoms, says Hersh. But it’s not always easy to get enough sleep : About half of people with MS report sleep disturbances, such as insomnia. e60dc2a1-f33c-4a05-9b50-8e3e8e597629a90e467b-1e69-4aa8-a5c1-f55fd1fe027b And that can present a problem, as these sleep disturbances are associated with MS-related cognitive impairment, depression, and fatigue. Sleep problems are also commonly undiagnosed. To improve sleep, Hersh advises patients to maintain a consistent sleep-wake routine and practice good sleep hygiene habits. The sleep hygiene recommendations that apply to everyone can also make a big difference in your MS. Those include, she says, sleeping in a dark, cool, and quiet environment, limiting screen time 30 to 60 minutes before bed, avoiding caffeine in the afternoon and evening, limiting alcohol, exercising earlier in the day, and following a relaxing bedtime routine.
7. You Haven’t Considered Mobility Devices and Support Walking challenges are common with MS. Canes, crutches, motorized scooters, walkers, and wheelchairs are all mobility aids that can help you move safely if needed.e60dc2a1-f33c-4a05-9b50-8e3e8e597629ae3a330b-4aea-4918-8bd8-0295d4e39f8c Some people may view using a mobility aid as a failure or a sign of giving in to their disease, but in reality, mobility aids can be empowering, helping you maintain your independence.e60dc2a1-f33c-4a05-9b50-8e3e8e5976297298099e-25ee-477f-9d3d-0cf6c5cdfb87 There are other aids and resources that are often unexplored, says Harrington. For example, if you have foot drop , a physical therapist who specializes in MS might recommend a nerve stimulator device rather than a foot orthotic that you find bulky. Or, you may benefit from Botox injections to loosen muscles and reduce spasticity , eliminating the need for an assistive device, says Harrington. Or, an occupational therapist may help you outfit your car with adaptations that help you drive safely. What’s right for you will be individual, but the point is to explore these other resources and professionals who can help. In addition, Harrington also recommends looking into whether there’s an assistive device clinic available to you. These places can evaluate you for aids needed for vision or mobility. “A lot of these subspecialties are overlooked in management, either in terms of devices that can be used or other strategies that improve mobility or day-to-day management of symptoms,” Harrington says.
The Takeaway MS management requires a comprehensive treatment plan that addresses your MS, non-MS health conditions, mental wellness, and more. Your lifestyle habits play a big role in how you feel day-to-day, as well as disease progression. Healthy diet and exercise and good sleep have been shown to improve quality of life and MS symptoms. Beyond medication, assistive devices and support like physical or occupational therapy are critical in helping you maintain safe mobility and remain independent. It’s important to be open and communicative with your healthcare providers, keeping them informed of any symptoms and concerns you may have.
2. You Aren’t Open About Your Goals Research suggests that doctors and patients often place a different emphasis on what is important when it comes to quality of life and treatment goals. One study found that people with MS prioritized mental health while physicians were more focused on physical disability; from the perspective of doctors, workplace adaptations were more significant to quality of life, while patients preferred faster access to healthcare.e60dc2a1-f33c-4a05-9b50-8e3e8e597629d3e32e8f-d651-4849-a123-bd25add48f60 Another study found that goals for patients included achieving independence and avoiding fatigue, vision loss, disabling relapses , and bladder and bowel issues, while providers more broadly prioritized preventing disability and inflammation.e60dc2a1-f33c-4a05-9b50-8e3e8e59762906ad3b33-8941-48c5-88e9-3fd54e1e6d6c It’s important to be open with your healthcare team about your specific treatment and lifestyle goals. When you’re in your appointment, Dr. Harrington recommends being open about your overall goals in care, as well as your fears (for example about side effects of medication), and other factors, like your access to or ability to afford medical care. “Being up front is helpful so that, as a patient, you are not getting recommendations that are not in line with your goals and values,” they explain.
4. You’re Not Paying Attention to Your Mental Health Mental health challenges , such as depression or anxiety, are fairly common, affecting one-quarter to one-third of people with MS.e60dc2a1-f33c-4a05-9b50-8e3e8e59762901072ddb-160b-4dba-a6ad-46f274de3d8e MS can be overwhelming to manage, and it brings with it a lot of stressors: the diagnosis of the disease, progressive disability, and inflammation in the brain can affect your mental health. Side effects of medications can also make mood problems more likely.e60dc2a1-f33c-4a05-9b50-8e3e8e597629fd4aae74-5c04-4873-956e-278bbc8e712d While many people with MS are aware and concerned about their mental health, it’s important not to downplay or dismiss it. How you feel emotionally is just as important as how you’re doing physically. “I think it’s important to seek out help if mental health is affecting your quality of life or preventing you from doing things you want to do or seeing your doctor for care,” says Harrington. There are several ways you can assess this. “We have trained neuropsychiatrists who assess cognitive function if there are concerns about memory. This testing can tease out if there are underlying mood disorders contributing to these symptoms,” they explain. In addition, your neurologist may also be able to refer you to a therapist who can work with you in talk therapy to address negative thinking patterns.
5. You’re Not Putting Enough Emphasis on Lifestyle Habits Lifestyle management is important in MS treatment. “Routine physical activity, a healthy anti-inflammatory nutritional regimen , stress management, restorative sleep, and abstaining from unhealthy behaviors like tobacco use play a meaningful role in improving the overall MS disease course, symptom management, and quality of life,” says Hersh. Together, they can help support your mood, energy levels, and cognitive health, she says. A study of 850 people with MS looked at the association between healthy lifestyle behaviors — like not smoking, taking omega-3 supplements, vitamin D supplementation, exercise, diet, and meditation — and better health outcomes. Researchers found that engagement with four or more of these behaviors, especially diet and physical activity, was associated with a higher mental and physical quality of life, a 23 percent lower prevalence of fatigue, and a 56 percent lower prevalence of moderate disability.e60dc2a1-f33c-4a05-9b50-8e3e8e597629c4202b4f-f6d8-45d0-a228-64bac6d56666
1. You Don’t Report (or You Downplay) Symptoms People with MS may minimize their symptoms when talking with their doctors for a variety of reasons. Those who live with chronic pain may come to think of it as something of a new normal, not wanting to be seen as complaining to their practitioner. Or they may be concerned and anxious about having to initiate a new treatment.e60dc2a1-f33c-4a05-9b50-8e3e8e597629cacbe889-3915-4e2d-a320-3335da592a9c But with a wide variety of possible symptoms — bladder issues, vision problems, muscle weakness, tingling and numbness, dizziness, fatigue, cognitive changes — it’s important to let your physician know if you’ve developed new symptoms that might be related to MS, or if there’s been a change in your existing symptoms or their severity.e60dc2a1-f33c-4a05-9b50-8e3e8e5976298871cca6-efdf-44a8-86f3-f6dc19f3b791 “Patients sometimes underreport symptoms or don’t discuss non-MS health concerns, which can limit comprehensive care,” says Carrie Hersh, DO , a neuroimmunologist at Cleveland Clinic in Las Vegas. Dr. Hersh encourages patients to keep a symptom diary , prepare their questions before visits, and speak up about new or changing symptoms. Before an appointment, it may also help to brainstorm the three most bothersome symptoms that are impairing your daily life and prioritize talking about them during the visit, recommends Cole Harrington, MD, PhD , an assistant professor in neurology at the Ohio State University Wexner Medical Center in Columbus. It’s common to feel pressed for time during a visit, and this organization can help you get your main concerns out front.
Managing multiple sclerosis (MS) can be challenging, requiring you to pay attention to many different things at once: taking a disease-modifying therapy, treating symptoms, regularly seeing a neurologist, getting an annual MRI, possibly going to physical therapy or seeing other specialists, and more. And this disease is highly individualized — doctors can’t tell you outright that you’ll have certain symptoms or will experience them in a specific way, and it’s difficult to forecast how you’ll progress. With all that going on, and the effects of symptoms like fatigue , there may be important aspects of MS management that are falling by the wayside. Here are some common mistakes to avoid.
3. You Haven’t Seen Your Primary Care Provider Lately Having MS doesn’t insulate you from other, non-MS-related health concerns. In addition to regularly seeing a neurologist for your MS care, you should also have routine appointments with your primary care provider (PCP). “It’s important to manage high blood pressure , high cholesterol, your weight, and diabetes, as these conditions can impact brain health,” says Harrington. Your PCP or another specialist (such as an endocrinologist if you have diabetes) is the best person to direct this care, including managing any medications you are on, says Harrington. In addition, they can advise on vaccinations and other health screenings (such as cancer screenings) that you need to make sure that your whole body is being taken care of.