In people with multiple sclerosis (MS), muscle weakness can become so severe that it becomes difficult to stand, open a jar, or turn a doorknob. Along with fatigue and headaches, weakness is one of the top three common symptoms experienced by MyMSTeam members. More than 38,000 MyMSTeam members have reported weakness as a symptom.
Muscle weakness requires special care and management. Weak muscles can have a huge impact on MyMSTeam members’ quality of life, as they affect day-to-day living and interfere with activities such as working, driving, or taking pets for walks.
In one survey of 1,107 MyMSTeam members, 64 percent reported struggling with walking, mobility, or balance. Muscle weakness is a major contributor to these challenges and to disability progression in general.
Here are some of the ways MyMSTeam members report muscle weakness affects them:
Deconditioning of muscles happens when people stop using their muscles. When muscles are not used regularly, they become smaller (also called atrophy or muscle wasting) and weaker. This is a common struggle for many MyMSTeam members who find it harder to exercise and stay active due to symptoms of MS, like fatigue, heat sensitivity, and mobility problems.
MS and other demyelinating diseases can cause damage to the myelin sheathing around nerves in the central nervous system (the spinal cord and brain), along with the nerve fibers themselves. Demyelination attacks by the immune system affect the way the muscles work, causing weakness, stiffness, spasms, pain, and loss of coordination. When muscle weakness is caused by demyelination and nerve damage, exercise is still important, but it must be modified to avoid fatiguing damaged nerves.
Some people experience muscle spasms as a symptom of MS. To treat this symptom, doctors may prescribe medications such as Lioresal (Baclofen) or Zanaflex (Tizanidine). For some, medications intended to treat spasticity 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 for several disease-modifying therapies (DMTs) for MS, including Avonex (Interferon beta 1a), Betaseron (Interferon beta 1b), Extavia (Interferon beta 1b), Plegridy (Peginterferon beta 1a), and Rebif (Interferon beta 1a). Weakness associated with these medications is usually temporary, and is often associated with other side effects such as flu-like symptoms.
However, DMTs are also proven to reduce the frequency and severity of MS relapses, reduce the amount of new damage to the nervous system caused by MS, and slow the accumulation of disability.
Talk to your health care provider if you think a medication you are taking may be contributing to your muscle weakness. They may be able to recommend a change in dosage that can minimize side effects.
Since 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.
A physical therapist (PT) or occupational therapist (OT) can help identify the best exercises for an individual, as well as help supervise exercise. As one MyMSTeam member said, “I'm now doing PT after an awful fall that left me in a wheelchair. But keep working to make your muscles stronger.”
Another member said, “I found a PT who listened to my concerns, and 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. I use light weights and just increase reps or sets that coincide with my ability.”
Another MyMSTeam member recommends finding a PT 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 exacerbated by deconditioning and muscle atrophy, exercise can be helpful. Exercise can also help prevent the development of related health conditions (known as comorbidities) that are more common in people with MS, such as high blood pressure.
Not everyone has the means or the opportunity to work with a physical therapist, but there are plenty of safe exercises people with MS can do at home. The UK-based MS Society has some suggestions for simple exercises to manage balance and fatigue.
Members acknowledge that it can be hard to exercise with MS. Overcoming fatigue, finding the time, or not knowing how to exercise safely all present different challenges. Members encourage each other and offer tips for overcoming the challenges to staying active.
“When I stopped exercising, I felt weaker, and my doctor had some good advice,” said one MyMSTeam member. “On the days I feel weak 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 explained that an activity monitor has 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,” they wrote.
MyMSTeam members who are able to incorporate more exercise often report improvements in muscle weakness:
Fatigue is the most common MS symptom reported by MyMSTeam members, and it is possible that fatigue is contributing to your muscle weakness. As one MyMSTeam member described her 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 about how to manage the fatigue from MS. Addressing fatigue may be helpful in managing muscle weakness. Some MyMSTeam members report improving their fatigue with prescribed medications, including Symmetrel (Amantadine), Provigil (Modafinil), Adderall (Amphetamine/Dextroamphetamine), Ritalin (Methylphenidate), and Concerta (Methylphenidate). Other members mention that dietary changes or taking certain supplements has helped with MS fatigue. Read more about how MyMSTeam members manage fatigue.
According to MyMSTeam members, rollators, crutches, or canes can help on days when muscle weakness affects mobility. One MyMSTeam member said, “Like everyone else, I just keep moving! I used to walk a lot. Now I use a walker with wheels and love it! I can still walk with help.” Read more about how MyMSTeam members manage leg weakness.
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 his limitations by writing, ”My ‘get up and go’ just got up and went.” Another member said, “I expect to drop so much — I think I'm getting good at catching.”
When you join MyMSTeam, the social network and online support group for those living with multiple sclerosis, you gain a community of more than 168,000 who understand exactly what you’re going through. Living with muscle weakness is one of the most popular topics of conversation.
What have you found that helps your muscle weakness? What coping strategies have worked for you? Share your experiences in the comments below or directly on MyMSTeam.