Connect with others who understand.

sign up log in
About MyMSTeam

Managing MS Muscle Weakness

Updated on September 30, 2020

Article written by
Kelly Crumrin

Medically reviewed by
Dr. Amit Shelat

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.

How Does Muscle Weakness Affect People With MS?

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 ways MyMSTeam members reported 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, not being able to open a bag of chips without using scissors, or wringing 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 dropping 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, drop foot, 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

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.

Damage to the Nerve Fibers (Demyelination)

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 can be counterproductive. Attempts to build muscle can result in increased feelings of weakness and tiredness.

Muscle Weakness as a Side Effect of Medications

Some people experience muscle spasms as a symptom of MS. To treat this symptom, doctors may prescribe medications such as Lioresal (Baclofen), Cyclobenzaprine (Flexeril), 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). 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?

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 helped them.

Work With a Physical Therapist or Occupational Therapist

A physical therapist (PT) or occupational therapist (OT) can help identify the best exercises for an individual, as well as 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 recommended finding a physical therapist who understands 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 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 U.K.-based MS Society has some suggestions for simple exercises to manage balance and fatigue.

MyMSTeam 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:

  • “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 mid-thigh 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 and I'm so much stronger. I still have my MS issues with balance etc., but it's made life far easier now.”

Address Fatigue

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 reported improving their fatigue with prescribed medications, including Symmetrel (Amantadine), Provigil (Modafinil), Adderall (Amphetamine/Dextroamphetamine), Ritalin (Methylphenidate), and Concerta (Methylphenidate). Other members have shared that dietary changes or taking certain supplements has helped with MS fatigue. Read more about how MyMSTeam members manage 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.” Read more about how MyMSTeam members manage leg weakness.

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 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 150,000 who understand exactly what you’re going through. Living with muscle weakness is one of the most popular topics of conversation.

Here are some conversations about muscle weakness:

Here are some question-and-answer threads about muscle weakness:

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.

References

  1. Weakness — Multiple Sclerosis Trust
  2. Weakness — National Multiple Sclerosis Society
  3. Muscle atrophy — MedlinePlus
  4. Demyelinating disease: What can you do about it? — Mayo Clinic
  5. Spasticity and spasms — Multiple Sclerosis Trust
  6. Disease-Modifying Therapies for MS — National Multiple Sclerosis Society
  7. Simple exercises — MS Society
  8. Fatigue — National Multiple Sclerosis Society

Kelly leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.

Amit Shelat, D.O. is a fellow of the American Academy of Neurology and the American College of Physicians. Learn more about him here. Review provided by VeriMed Healthcare Network.

A MyMSTeam Member said:

Me too all I have to do having a bad day just seems worse everything not wanting to work

posted about 1 month ago

hug (1)

Recent articles

Mht ad dr boster qa part 2 v02.015
Back by popular demand! Dr. Aaron Boster joins MyMSTeam cofounder and COO, Mary Ray, for another...

How To Manage Your MS Symptoms and the Side Effects of Treatments With Dr. Boster

Back by popular demand! Dr. Aaron Boster joins MyMSTeam cofounder and COO, Mary Ray, for another...
Mht dr boster internal ad post event carousel
Medically reviewed by Aaron Boster, M.D. Dr. Aaron Boster brought his characteristic energy and...

Dr. Boster Gets Real Answering Your Top MS Questions

Medically reviewed by Aaron Boster, M.D. Dr. Aaron Boster brought his characteristic energy and...
Mht mymsteam resourcecenter article3 carousel managing ms leg weakness
Article written by Kelly Crumrin Medically reviewed by Dr. Amit ShelatLegs like jelly or noodles,...

Managing MS Leg Weakness

Article written by Kelly Crumrin Medically reviewed by Dr. Amit ShelatLegs like jelly or noodles,...
Mht mymsteam resourcecenter article1 carousel ms fatigue how to fight fatigue with ms
Article written by Kelly Crumrin Medically reviewed by Dr. Amit ShelatFatigue is a very common...

MS Fatigue: How to Fight Fatigue with MS

Article written by Kelly Crumrin Medically reviewed by Dr. Amit ShelatFatigue is a very common...
Screen shot 2020 03 04 at 2.57.32 pm
Article written by Laurie Berger Medically reviewed by Dr. Amit ShelatThe MS hug is a painful...

The MS Hug Explained: Description, Symptoms, and Causes

Article written by Laurie Berger Medically reviewed by Dr. Amit ShelatThe MS hug is a painful...
Scale 403585 1920
Article written by Alison Channon Medically reviewed by Dr. Amit ShelatMaintaining a healthy...

Weight Gain and MS

Article written by Alison Channon Medically reviewed by Dr. Amit ShelatMaintaining a healthy...
Brain lesions in ms
Article written by Nyaka Mwanza Brain lesions in multiple sclerosis are caused by an abnormal...

Brain Lesions in MS: What You Must Know

Article written by Nyaka Mwanza Brain lesions in multiple sclerosis are caused by an abnormal...
Mht video ms   covid 19 an interview  with  dr. aaron boster vertical04 carousel
Article written by Eric Peacock Medically reviewed by Dr. Aaron BosterAccording to Dr. Aaron...

MS Treatments and COVID-19: What to Discuss With Your Neurologist

Article written by Eric Peacock Medically reviewed by Dr. Aaron BosterAccording to Dr. Aaron...
Mht covid19 essentialupdates carousel
During the COVID-19 pandemic, MyMSTeam will provide summaries and links to articles of importance...

COVID-19 and Multiple Sclerosis (MS) Essential Updates

During the COVID-19 pandemic, MyMSTeam will provide summaries and links to articles of importance...
Signs and symptoms of spms
Article written by Nyaka Mwanza Secondary progressive multiple sclerosis (SPMS) is diagnosed in...

Signs and Symptoms of Secondary Progressive Multiple Sclerosis (SPMS)

Article written by Nyaka Mwanza Secondary progressive multiple sclerosis (SPMS) is diagnosed in...
MyMSTeam My multiple sclerosis Team

Two Ways to Get Started with MyMSTeam

Become a Member

Connect with others who are living with multiple sclerosis. Get members only access to emotional support, advice, treatment insights, and more.

sign up

Become a Subscriber

Get the latest articles about multiple sclerosis sent to your inbox.

Not now, thanks

Privacy policy
MyMSTeam My multiple sclerosis Team

Thank you for signing up.

close