Fatigue in Multiple Sclerosis

This "Low-Grade Flu Feeling" Can Be Debilitating, but You Can Manage It

tired woman

By and large, the fatigue that comes with multiple sclerosis (MS) can be the most debilitating symptom. Imagine waking up in the morning with half the amount of energy you normally do, such as when you're sick or getting over a bad infection, and being expected to carry out a full day's worth of activities. That's a day in the life of many of us with MS. 

What Is MS Fatigue? 

Experts estimate that between 85 and 95 percent of people with MS experience fatigue, also referred to as "MS lassitude," and it is caused by the disease itself. You may also have secondary fatigue with MS, caused by sleep disturbances, some medications, the extra effort it takes to accomplish tasks if you have balance or gait challenges, and depression, to name a few. 

Often severe enough to interfere with daily responsibilities, MS fatigue can be both physical and cognitive in nature, meaning that you may at times feels heavy limbs or overwhelming physical exhaustion, and other times you may feel mentally "cloudy" or have difficulty engaging in a conversation. Sometimes, you feel both at the same time. Those days can feel very defeating. 

Making matters a bit more challenging, your friends and family who don't have multiple sclerosis may struggle to understand your fatigue and the ways it limits your activities. After all, they have never experienced the “special” nature of MS-related fatigue—so when you have to a cancel a dinner or can't make it to an event because you're just too painfully tired, they may not be as understanding of your problem as you'd hope for. Even though fatigue can be the most debilitating part of having MS, it is an invisible symptom unlike a limp or a tremor, so it is easy for others to overlook or minimize. This can be very upsetting to those of us coping with autoimmune disease

What Does MS Fatigue Feel Like?

While everyone experiences “being tired” occasionally, the fatigue associated with MS has certain characteristics:

  • It occurs daily.
  • It may be present in the morning, even after a good night’s sleep.
  • It worsens as the day progresses.
  • Heat and humidity aggravate it.
  • It may come on suddenly, causing you to immediately need rest.
  • It's more severe than normal fatigue and more likely to interfere with daily life.

For some people, there are additional related symptoms, including:

  • Feeling of heaviness in the arms and legs
  • Worsening of other symptoms, such as problems with balance or vision, or slurring speech
  • Difficulty concentrating
  • Vertigo or dizziness
  • Headaches
  • Feeling ill, like you have the flu
  • Depression

Is There Treatment Available?

If you're suffering from MS fatigue that is making daily life challenging, rest assured that there are steps you can take to improve your quality of life. First, I always recommend a full check up with your doctor to investigate any non-MS causes of fatigue that may be worsening your disease-related fatigue and putting you over the edge. Thyroid disease, anemia, and many others can be treated.

If it's your MS symptoms that are wearing you down, don't hesitate to let your doctor know that you are not doing well and she may need to reconsider your medications or prescribe others to get your pain and other symptoms more under control. There are also two medications on the market, Amantadine (Symmetrel®) and Modafinil (Provigil®) that are used to treat extreme fatigue in MS patients; you may want to ask your doctor about these. 

Lastly, and arguably most importantly, anyone with a chronic condition must learn energy-saving tricks and strategies to prevent over-exertion. Here are some to keep in your back pocket: 

  • Get to know your best times of the day—maybe your energy peaks at 11am and then goes downhill after that, so it's best to do grocery shopping in the morning.
  • Use any assistive devices your insurance will pay for that can help you (now is not the time to be prideful).
  • Take rests liberally and without embarrassment. Avoid scheduling too many tasks in one day; instead, spread them out over the course of the week.
  • Try to drop any shame you may feel about not being able to function as you used to; it will only mentally drain you. Conserve that energy instead. 
  • Do the very best you can to incorporate strength training into your life; the stronger your muscles and cardiovascular system, the more energy you will have. You may have MS, but you're still a human being, and all of us benefit from regular movement and exercise to get our blood flowing and build our physical strength. 
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Article Sources
  • Turkington, Carol. The A to Z of Multiple Sclerosis. New York: Checkmark Books.
  • National Multiple Sclerosis Society: Fatigue