In people with multiple sclerosis (MS), muscle weakness can become so severe that standing, opening a jar, or turning a doorknob is difficult. 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, as they affect day-to-day living and interfere with activities such as working, driving, or taking pets for walks.

How Does Muscle Weakness Affect People With MS?

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 muscle weakness affects them:

• “Sometimes, I fall and can’t even get up from the weakness.”
• “I have lost the strength in my hands, which has become very frustrating to me in trying to complete daily living chores. Even opening a water bottle has become a challenge.”
• “I held the phone the other day and my arm became weak suddenly, and I had to catch the phone with the other hand.”
• “I have noticed things like it takes both hands to turn a doorknob, and not being able to open a bag of chips without using scissors or wring a washcloth out thoroughly.”
• “Lifting an empty kettle is or can be a chore, and then I’m unable to undo the coffee jar or drop the milk to the floor because it’s a full or a new carton. And I tend to spill the full cup.”

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.

What Causes Muscle Weakness?

According to the National Multiple Sclerosis Society, the two primary causes of muscle weakness in MS are deconditioning of the muscles and damage to nerves. In some people, weakness may be caused or worsened as a side effect of certain medications.

Muscle Deconditioning

Muscle deconditioning occurs when muscles are not 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 symptoms of MS — such as fatigue, heat sensitivity, and mobility problems — can make it difficult to stay active and exercise regularly.

Demyelination

MS is considered a demyelinating disease, which means 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. This damage can also extend to the nerve fibers themselves. 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 overfatiguing the damaged nerves.

Medication Side Effects

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 for several disease-modifying therapies (DMTs) for MS. 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.

How Do MyMSTeam Members Manage Muscle Weakness?

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.

Work With a Physical Therapist or Occupational Therapist

Through physical therapy (PT) or occupational therapy, a professional can help identify the best exercises for you and provide supervision during 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.

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 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,” they shared. “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 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.”

Try To Exercise

For those whose muscle weakness may be worsened by deconditioning and muscle atrophy, exercise can be helpful. Exercise can also help prevent the development of comorbidities (related health conditions) 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 MS Society has suggestions for simple exercises to manage balance and fatigue.

Members acknowledge that exercising with MS can be difficult. 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 of 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, 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 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:

• “I’ve started swimming twice a week to hopefully help my muscle strength. I still have weakness, but I know I’m getting stronger because I’m able to swim longer with less pain.”
• “I had noticed some muscle weakness in my legs sometimes when I was walking my dog. I have since started going to a fitness club once a week, yoga once a week, dance class once a week, and all these have made a difference.”
• “My legs have been numb from midthigh down for years. Trying to maintain muscle strength has helped me to walk unaided so far most times.”
• “In my case, the reduced activity weakened me significantly. I got an exercise bike and put in some effort. Six months later, I’m so much stronger. I still have my MS issues with balance, but it’s made life far easier now.”

Address Fatigue

Fatigue is the most common MS symptom reported by MyMSTeam members, and fatigue may be contributing to muscle weakness. One MyMSTeam member described their experience with muscle weakness as follows: “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 help manage muscle weakness. Some MyMSTeam members report improving their fatigue with prescribed medications.

Other members have mentioned that making dietary changes or taking certain supplements has helped with MS fatigue.

Use Mobility Aids

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.”

Try To Keep a Positive Attitude

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 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.”

Find Your Team

On MyMSTeam, the online social network for people living with MS and their loved ones, more than 215,000 members come together to share their stories with others who understand life with MS.

What have you found that helps your muscle weakness? What coping strategies have worked for you? Share your experiences in the comments below or share on your Activities page.