In people with multiple sclerosis (MS), muscle weakness can become so severe that it’s difficult to stand, open a jar, or turn a doorknob. Along with fatigue and headaches, weakness is one of the top three most common symptoms of MS. More than 43,000 MyMSTeam members have reported weakness as a symptom.
Muscle weakness requires special care and management. Weak muscles can have a huge impact on your quality of life, affecting day-to-day living and interfering with activities such as working, driving, or taking pets for walks.
In people living with MS, muscle weakness is a major contributor to challenges around walking, mobility, balance, and disability progression in general. Some research suggests that up to 70 percent of people with MS experience muscle weakness.
Here are some of the ways MyMSTeam members report that muscle weakness affects them:
For many with MS, problems caused by muscle weakness make it difficult to maintain independence and self-reliance. Leg weakness, in particular, can be a major factor in losing mobility. Other MS symptoms — such as depression, foot drop, chronic pain, and muscle spasms — can contribute to feelings of weakness and fatigue, especially during flare-ups.
According to the National Multiple Sclerosis Society, the two primary causes of muscle weakness in MS are deconditioning of the muscles and damage to the spinal cord or brain. In some people, weakness may be caused by certain medications or worsened as a side effect.
Muscle deconditioning occurs when muscles aren’t used regularly, leading to a reduction in muscle mass and strength, a process known as muscle atrophy. This is a common challenge for many members of MyMSTeam, as MS symptoms such as fatigue, heat sensitivity, and mobility problems can make it difficult to stay active and exercise regularly.
MS is considered a demyelinating disease — it involves damage to the myelin sheath, the protective covering that surrounds nerve fibers in the central nervous system (CNS), including the spinal cord and brain. When the immune system attacks and demyelinates these nerves, it disrupts the communication between the brain and muscles, leading to symptoms such as muscle weakness, stiffness, spasms, pain, and loss of coordination.
Even when muscle weakness is caused by demyelination and nerve damage, exercise remains important. However, it must be carefully modified to avoid overworking the damaged nerves.
Some people experience muscle spasms as a symptom of MS. For some, medications intended to treat spasticity (involuntary tightness, stiffness, or muscle contractions) can increase weakness as a side effect.
One MyMSTeam member said, “I find it difficult to turn doorknobs or open jars, as my hand strength has left me. I’m not sure if this is the MS or the high dose of baclofen I take to reduce spasticity.”
Weakness is also listed as a potential side effect of several disease-modifying therapies (DMTs) for MS. Weakness associated with these medications is usually temporary and often associated with other side effects such as flu-like symptoms.
However, DMTs can also help by reducing how often MS flare-ups happen, making them less severe, preventing new damage to the nervous system, and slowing down disability over time.
Talk to your healthcare provider if you think a medication you’re taking may be contributing to your muscle weakness. They may be able to recommend a change in dosage that can minimize side effects.
Because muscle weakness in MS can have multiple causes, what works to manage it differs from person to person. MyMSTeam members often discuss ways to manage muscle weakness and share what has worked for them.
Through physical therapy (PT) or occupational therapy, a professional can help identify the best exercises for you and supervise your exercise routine. A physical therapist focuses on improving your strength, mobility, and overall physical function, while an occupational therapist helps you develop the skills needed to perform daily activities and maintain independence in your everyday life.
“I’m now doing PT after an awful fall that left me in a wheelchair,” one MyMSTeam member said. “But keep working to make your muscles stronger.”
Another member said they found a physical therapist who listened to their concerns. “Between him and me, we came up with exercises I could do that would help me with muscle strength — exercises that target upper body, core, and leg muscles,” they shared. “I use light weights and just increase reps or sets that coincide with my ability.”
Another MyMSTeam member recommends finding a physical therapist who specializes in neurological conditions: “Look for a PT place that specializes in working with people with neurological diseases, like MS or Parkinson’s, and with stroke victims and other brain injuries.”
For those whose muscle weakness may be worsened by deconditioning and muscle atrophy, exercise can be helpful. Physical activity can also help prevent comorbidities (related health conditions) that are more common in people with MS, such as high blood pressure.
Not everyone has the means or opportunity to work with a physical therapist, but plenty of safe exercises can be done at home. The Multiple Sclerosis Society has suggestions for simple exercises to manage balance and fatigue.
Members acknowledge that exercising with MS can be hard. Overcoming fatigue, finding the time, and not knowing how to exercise safely all present different challenges. Members encourage each other and share tips to help stay active and motivated.
“When I stopped exercising, I felt weaker, and my doctor had some good advice,” one MyMSTeam member said. “On the days I feel weak, I just do five minutes of exercise. That way, you are still doing something. I find once I get started, I can usually do more than I thought I could!”
Another MyMSTeam member said that an activity monitor helped them keep up with exercise: “I have got one of those footstep counters. I try to do as much or even more than I did the day before.”
MyMSTeam members who are able to incorporate more exercise often report improvements in muscle weakness:
Fatigue is the most common symptom reported by MyMSTeam members, and it’s possible that fatigue contributes to muscle weakness. One member told others about their experience with muscle weakness: “I also suffer from terrible bouts of fatigue. One minute I am walking about my bungalow, then I collapse with no notice, absolutely shattered.”
If fatigue seems related to your muscle weakness, talk to your neurologist (a doctor who specializes in diagnosing and treating problems with the nervous system) about how to manage the fatigue from MS. Addressing fatigue may help manage muscle weakness.
Some MyMSTeam members report improving their fatigue with prescribed medications. Others have mentioned that making changes in their diet or taking certain supplements has helped with MS fatigue.
According to MyMSTeam members, rollators, crutches, and canes can help on days when muscle weakness affects mobility. “Like everyone else, I just keep moving!” one member said. “I used to walk a lot. Now I use a walker with wheels and love it! I can still walk with help.”
MyMSTeam members often face challenges related to MS, which can be a debilitating and burdensome condition. Treating depression, finding support on MyMSTeam, and trying to keep a positive outlook are a few of the ways members get through hard times.
A sense of humor can be helpful, too. One MyMSTeam member made light of their limitations: ”My ‘get up and go’ just got up and went.” Another said, “I expect to drop so much — I think I’m getting good at catching.”
On MyMSTeam, the online social network for people living with MS and their loved ones, members come together to share their stories with others who understand life with MS.
What have you found that helps with your muscle weakness? What coping strategies have worked for you? Share your experiences in the comments below, or start a conversation by posting on your Activities page.
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