Multiple sclerosis (MS) symptoms can affect your quality of life and keep you from doing the activities that you enjoy and tasks that you need to accomplish. MS can get in the way of your ability to work, and you may need to apply for disability benefits. Even if you’re working, MS symptoms such as mobility problems and pain can affect your daily functioning and have an impact on your caregivers and family members too.
The type of MS you have may affect your symptoms. People who have relapsing-remitting MS (RRMS) — the most common type — go through periods when they don’t experience symptoms, known as remission. They then have relapses, with new or worsening symptoms each time.
The progression of RRMS can lead to secondary progressive MS (SPMS). People with SPMS experience symptoms of some kind at all times. About 15 percent of people with MS have primary progressive MS and never experience remission.
Even though MS itself isn’t a disability, symptoms of any type of multiple sclerosis can cause deficits in functioning. The following four effects of MS can have an impact on activities of daily living and cause disability.
Multiple sclerosis causes the immune system to attack the central nervous system. Rogue immune cells attack both nerve cells and the myelinprotective nerve coverings () during a process called demyelination. Nerve damage makes it harder for the brain to send messages through the nerves to communicate with different parts of the body. This lack of communication can affect the muscles and cause weakness, spasticity (muscle stiffness), and pain.
Dysfunction caused by nerve damage can cause disabling mobility impairment, affecting your legs and your walking ability, including your gait and walking speed. One study reported that more than three-quarters of people with MS experience walking impairment. Nerve damage also can make it difficult to use your arms and hands, so even simple tasks like opening a door or holding a cell phone are challenging. Difficulties like these can keep you from working.
Nerve damage pain can also be disabling. From 25 percent to 90 percent of people with MS report experiencing pain. Types of nerve damage pain include:
This nerve pain can be severe and life-changing. One MyMSTeam member said, “I feel like there’s a snake around my abdomen squeezing me.”
“When my trigeminal neuralgia is most vile, I can’t feel my face if I touch it. It feels like everything from my cheekbones on down are on fire,” another member shared.
One way to help offset the effects of nerve damage and participate in daily life is to address the residual weakness with physical therapy and, if needed, mobility aids and assistive devices. Using a mobility aid, such as a cane or wheelchair, may make some people feel like the disease is “winning.” However, in reality, these aids can be liberating — they allow you to save energy, avoid the onset of fatigue, and prevent falls. Pain management can also improve function and quality of life.
MS fatigue is incredibly common — up to 95 percent of people with MS experience it. Fatigue is described as being much more tired and exhausted than you might expect to feel from your effort. The fatigue caused by MS can be disabling. “Today has been a struggle. I’ve been so tired — not done a single thing,” said one MyMSTeam member.
Another shared a frustrating experience: “If I do anything while I am fatigued, the symptoms get worse. But if I do just a little before the fatigue starts, I can’t accomplish enough.”
Researchers aren’t sure what exactly causes MS fatigue. The symptom could be a side effect of nerve damage or of the underlying immune system issues that cause MS. Medication side effects can also lead to fatigue. Your health care provider can help you find the best strategies and medications to help you reduce your fatigue and regain some energy.
Together, nerve damage and fatigue can make it difficult to keep physical activity in your regular routine. Over time, this lack of movement can cause a medical condition called muscle atrophy. This can become a vicious cycle, because atrophy makes it even more difficult to exercise and move — and further lack of exercise can worsen MS symptoms and accelerate disease progression.
The good news is that MS-related muscle deconditioning can often be stopped or even reversed, restoring some physical functioning. Exercise, physical therapy, and an improved diet can help rebuild muscle.
MS can take a toll on your mental health. Dealing with the limitations of an MS diagnosis can have psychosocial effects and lead to mental health conditions, such as depression. In fact, half of people with MS may experience depression, which can lead to feelings of sadness, irritability, and hopelessness.
Depression also can worsen MS symptoms such as brain fog and fatigue, sometimes making it hard to tell them apart. “I am exhausted — absolutely drained, not sleepy. I would be too tired to make it through a meal. Can MS bring depression?” asked one MyMSTeam member.
A tool called the Expanded Disability Status Scale (EDSS) measures disability level, including some of the disabling effects of MS on both body and mind. A 2020 review study found that worse symptoms, as quantified by EDSS, were associated with diminished quality of life. The study also found depression had a negative effect on quality of life.
Taking care of both your mental and physical health is important when you’re living with MS. Your neurologist or other health care provider can help you find ways to manage depression. Treatment options may include therapy and medication. “Depression often accompanies MS. Mental and emotional health is key, and antidepressants work,” said one MyMSTeam member.
Be sure to tell your doctor about the ways MS affects your mobility and function. They can help you find the best approaches to keep you as active and engaged as possible while living with MS. For example, clinical trials have shown that disease-modifying treatments (DMTs) can slow the progress of MS toward disability. Talk to your MS specialist about your treatment goals and what plan can best help you reach them.
MyMSTeam is the social network for people with MS and their loved ones. Here, more than 213,000 members come together to discuss life with multiple sclerosis. Members frequently discuss the disabling symptoms that are part of living with MS.
Have you experienced walking problems with multiple sclerosis? Share your stories or advice in the comments below or by posting on your Activities page.
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I have poms I can barely walk have problems standing and walking unassisted
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