Fatigue is one of the most common symptoms of multiple sclerosis (MS) and can be a disabling and frustrating symptom with a huge impact on quality of life. Between 75 percent and 95 percent of people with MS experience fatigue.
In this article, we’ll share what MS fatigue feels like, what causes it, and six ways to manage fatigue to reduce its impact on your daily life and help you feel more like yourself.
Fatigue in MS is different in many ways from the tiredness people may experience as the result of a long day at work or a late night out. Fatigue is also different from sleepiness, although staying in bed may be the only thing that seems to help at times. According to the National Multiple Sclerosis Society, people with MS commonly experience fatigue that persists daily, even after plenty of sleep, and worsens as the day goes on.
When fatigue affects people with MS in these ways, it may also be referred to as lassitude. MS fatigue is typically more severe than normal fatigue and may interfere with work, school, and tasks of daily life. In fact, MS fatigue is a primary reason people with MS have to reduce work hours or stop working altogether.
Members of MyMSTeam describe chronic, profound fatigue that does not usually improve with a nap or a cup of coffee. Here are some descriptions of MS fatigue from members in their own words:
MyMSTeam members also discuss how MS fatigue affects their relationships with friends, family, and romantic partners. Members describe disappointment and resentment from loved ones who do not understand how severe and unrelenting their fatigue from MS can be.
Researchers are not yet certain what the causes of fatigue are in people with MS, but a recent review indicates that inflammation, other immune system processes, and lesions in the gray matter of the brain all likely play a role in MS-related fatigue. In MS, myelin (insulation that protects nerves) is damaged, causing disruptions to connections in the central nervous system (the brain, spinal cord, and optic nerve). As a result, in someone with MS, it takes more effort for the brain to relay messages and coordinate movement. All of these factors are believed to play a role in MS fatigue.
Of course, people with MS can also experience fatigue from other causes. For instance, fatigue can be a side effect of some medications. When the body is fighting an infection, fatigue is often a consequence. About half of people with MS experience depression at some point, and depression can worsen MS fatigue as well as directly cause fatigue. Other MS symptoms, including leg weakness and muscle weakness, can add to the burden of MS fatigue.
Some people with MS can improve their MS fatigue by using medications or other management strategies, such as increasing exercise or using energy-conserving techniques. Fatigue management can be a part of your everyday routine.
There are several types of medications that are sometimes prescribed to help manage fatigue in people with MS. Members of MyMSTeam report varying degrees of effectiveness. Like all medications, drugs prescribed for MS fatigue can also cause side effects.
More than 2,400 members of MyMSTeam indicate that they have taken amantadine (Symmetrel). This medication is used to treat influenza and Parkinson’s disease, and researchers are unsure how it works to manage MS fatigue. Modafinil (Provigil) is a wakefulness-promoting drug often prescribed for those with narcolepsy. Armodafinil (Nuvigill) is a very similar medication that is usually taken once a day.
Stimulants like amphetamine/dextroamphetamine (Adderall) and methylphenidate (sold as Ritalin and Concerta) can also be used to treat MS fatigue — although there is no good evidence that these work long term.
Exercise can have many benefits for people with MS. It may include improving fatigue as well as strength, flexibility, balance, cognition, mood, and bladder function. Tai chi, yoga, and water-based exercises are among the types of physical activity suggested for people with MS. Remember to stay hydrated and exercise in a cool room, if possible, or outside during cooler parts of the day. Always talk to your doctor before beginning a new exercise regimen. As the National Multiple Sclerosis Society recommends, “Start low and go slow.”
Some people with MS find that fatigue worsens with heat. Keeping cool as much as possible may help with MS fatigue. Some people with MS find cooling equipment such as scarves, fans, and vests to be helpful. The Multiple Sclerosis Association of America offers a program to distribute cooling equipment to some people with MS for free.
Some members of MyMSTeam report worse fatigue when they smoke cigarettes. According to the National Multiple Sclerosis Society, smoking can also affect the way MS medications work and hasten the progression from relapsing MS to a progressive type of MS. If you smoke, talk to your doctor about support with quitting, not only for your lung health but also to help your MS.
Some MyMSTeam members say they feel better when they take nutritional supplements, such as vitamins or herbal products. Before adding new supplements to your diet, talk to your doctor first. Some supplements can cause dangerous interactions with medications.
Many people with MS fatigue learn to use energy-conserving techniques while performing their daily activities. The Multiple Sclerosis Association of America recommends energy-saving tactics including:
Although these techniques may seem like small things, little bits of energy saved throughout the day can make a difference. Eventually, these tactics may become habits that save you more energy over time.
On MyMSTeam, the social network and online support group for those living with multiple sclerosis, members share advice, answer questions, and talk about life with MS.
Is a daily struggle with fatigue part of your life with MS? How do you manage your MS fatigue? Share your experiences with fatigue in the comments below or by posting on MyMSTeam.