Overcoming MS Fatigue

It’s one of the most common — and least understood — symptoms of MS. The latest research suggests that regular exercise and other lifestyle changes may be more effective than medication in addressing it.

For me and many others with multiple sclerosis (MS), fatigue is an all-encompassing symptom interfering with our ability to function in both our personal and work lives.

I feel fatigued physically, as full-body muscle weakness, and mentally, as intense tiredness with difficulty thinking. Poor sleep, exacerbation of weakness, heat, hormonal changes, and changing seasons all impact my level of fatigue.

Fatigue is in fact one of the most common symptoms of MS, occurring in about 80% of people with the disease. Some researchers consider fatigue to be one of the most debilitating and yet most poorly understood symptoms of the disease, as it’s difficult to measure and treat.

A 2021 review suggests that fatigue in MS is associated with a considerable decrease in quality of life as well as an economic burden. Fatigue can affect our employment opportunities, limit our ability to socialize and participate in many activities, and impact our mental health.

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What causes MS fatigue?

While the causes of MS fatigue aren’t fully understood, one theory is that it’s related to a constant activation of the immune system, similar to if you were fighting an ongoing virus. Fatigue may also result from the muscle weakness associated with MS. Another theory is that people with MS need to use a larger portion of the brain to accomplish certain activities than people without MS.

The MS Society UK categorizes MS fatigue as either primary fatigue, resulting from damage in the brain and spinal cord, or secondary fatigue, caused by living with MS symptoms.

What does MS fatigue feel like?

As someone who has been living with MS for many years, fatigue has impacted my life immensely. I’ve learned to adjust my life accordingly to prevent burnout. Going to sleep at a reasonable time and not over-scheduling myself are ways I compensate. I schedule important meetings earlier in the day and rest when a busy evening lies ahead.

When pseudo-flares set in — flares not caused by new central nervous system inflammation but from other factors, like stress, infection, exercise, warm temperatures, etc. — my fatigue levels worsen, often leaving me unable to continue my normal routine.

Volunteering in my children’s school, shopping for food, and driving long distances all pose a difficulty when I’m overly fatigued. Parenting is overwhelming to begin with, and fatigue makes routines like prepping meals, attending sporting events, and shuttling kids to activities even more difficult.

When my fatigue levels worsen, I rest often, allowing my body to find its way back to my baseline.

Fatigue levels often change from day to day and from one season to the next. A recent study found MS fatigue to be less severe during winter and more severe during summer. The researchers found that fatigue levels correlated with the monthly temperature trend. In my experience as well, heat makes fatigue worse, further decreasing my mobility, and even impacting my cognition during the summer months.

The latest research about treating MS fatigue

A recent survey of more than 4,000 people with MS in the United Kingdom found that only about a third of those who reported fatigue were offered a treatment for it. Thankfully, strategies exist for managing fatigue in MS and research has evaluated various options.

Medications

For some people, medications such as Adderall (dextroamphetamine and amphetamine), amantadine, Provigil (modafinil) or Nuvigil (armodafinil), Prozac (fluoxetine), Ritalin (methylphenidate) or low dose naltrexone may be helpful.

However, research regarding their efficacy in reducing MS fatigue has been limited and inconsistent. A recent study sought to address this and found that amantadine, modafinil, and methylphenidate were no better than placebo in improving MS-related fatigue and caused more frequent adverse events, though additional research needs to be done.

Your healthcare professional can discuss whether any of these medications might be useful for you.

Lifestyle modifications

Research does suggest that a variety of lifestyle adaptions can help reduce MS fatigue.

In a small clinical trial published in 2022, high intensity resistance training (HIRT) — or bursts of hard effort, with multiple repetitions of exercises on strength training machines, followed by rest periods — led to reductions in self-reported fatigue. Changes in plasma inflammatory protein markers provided additional evidence that HIRT may be an effective way to decrease fatigue in MS.

Further studies are needed to determine a recommended combination of duration, frequency, and intensity of exercise.

Similarly, a Danish study found that fatigue was likely to be higher in those who were more recently diagnosed with MS, those who smoke tobacco, and those who do not participate in regular physical activity. Researchers concluded that introducing or continuing exercise and quitting smoking are two effective ways to manage fatigue in MS.

In a 2021 review of studies, virtual reality (VR)-based therapy was found to produce a low to medium effect in reducing fatigue. It can also improve the quality of life, both physically and mentally.

VR therapy uses interactive simulations such as Nintendo, Wii Fit, and Oculus (now called Meta) to present users with environments that appear similar to the real world. Participants performed exercises through video games that can be adapted to account for the person’s state of fatigue. VR therapy is considered a safe technique with minimal adverse effects and can be completed at home.

For those of us with relapsing and remitting MS, a small study suggests that drinking cocoa (i.e., dark chocolate) and other flavonoid-rich beverages may have the potential to improve fatigue in MS. However, more research is needed to confirm this finding.

Research continues to look for effective ways to decrease fatigue in MS. The University of Washington is currently recruiting people with MS and chronic fatigue for a study examining the effectiveness of self-hypnosis and mindfulness meditation on decreasing fatigue levels. As research progresses, we will discover additional ways to lessen fatigue in our lives.

Tried-and-true crowdsourced tips

People within the MS community can be a wonderful resource. Members of an online support group for those living with MS suggest trying the following:

• planning ahead to account for diminishing energy levels throughout the day, including meal preparation, resting before events, and scheduling outings accordingly
• drinking plenty of water
• taking breaks as needed
• exercising
• breathing exercises
• drinking coffee
• getting adequate sleep
• remaining in air-conditioning as often as possible in summer
• using cooling devices, sun umbrellas, and fans in warm weather

The takeaway

When my fatigue becomes overwhelming, I remind myself that these episodes pass in due time. I know that missing personal and social events today means I’m more likely to participate again soon.

I’m thankful that research is being done to help those of us living with MS find effective strategies to lessen the impact of fatigue on our lives.