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Living With MS Fatigue

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David Spero, RN - Blogs
By David Spero, RNSeptember 23, 2021

Fatigue is more than feeling tired after a long day.  It’s an ongoing feeling of exhaustion that often does not go away even after a nap.  Fatigue is one of the most common and most disabling symptoms of MS. 

I can testify to the disabling part.  I’ve had weeks when I could barely get out of bed. Others agree. One user of our Facebook page commented, “I have just slept for 3 days with only 1- to 2-hour gaps. So fatigued it’s not funny. Can’t even eat without it draining my energy.”

Causes of MS Fatigue

MS fatigue has many causes.  Inflammation from the immune system’s attack on nerves is one. Nervous system struggling to adjust to myelin damage is another.  MS-related sleep problems or muscle weakness, urinary problems, pain, anxiety, and depression can all cause fatigue.

Fatigue often varies with our environment and behavior. When I get too warm, I can’t even sit up at my desk. After eating a big meal, I just want to fall asleep. If I overdo activities, I might pay for it with hours or days of fatigue.  I can avoid all these attacks by avoiding the triggering behaviors.

How Fatigue Affects Our Lives

MS is often called an invisible illness, and fatigue is the least visible part.  Family or friends might want us to do something, and all we can say is, “I’m not up to it.” They might think we’re making excuses, or they might stop asking, even though at other times we’re good to go.

For years, I noticed that I would get tired after eating, to the point of needing a nap. Then I found out about thermogenesis, the way the body heats up after eating.  I’m one of the many MS patients whose symptoms are worse when I’m warm, so thermogenesis can knock me out. Now I eat smaller meals and don’t have that problem. Protein raises body temperature more than other foods, so I never eat much protein at one time.

Warm air temperatures also exhaust me, like many people with MS.  I stay out of the sun on warm days and carry a little fan with me if I have to go out.  I make sure to stay hydrated, because bad things happen to me if I get warm or dehydrated. I might fall and not be able to get up.

It took me years to figure out that mental fatigue can be as dangerous as physical. I notice that when I’m warm or tired, I’m prone to misjudgments and stupid mistakes. I might try to reach something on a high shelf or trip over a shoe on the floor, things I would never do when not tired.  I might think I can carry something heavy, maybe something I could carry at my best but shouldn’t try when fatigued.  I’ve learned never to make important life decisions while fatigued.

Like most people with MS, I have good days and bad days.  On a good day, there’s a strong temptation to do all the things I couldn’t do on bad days, to live a month of life in a day.  When I do that, I pay with days or weeks of fatigue.  Sometimes we can accept that trade-off for a special occasion, but in general it’s important to keep some energy in reserve.

Physical therapists say it’s crucial to keep moving our bodies. Keeping still all day can add to fatigue.  Sometimes it’s hard to move, but you should try to find some way to exercise lightly.  Stretching and strengthening exercise make it easier for me to move.

There are medications for fatigue that work for many patients. The easiest one is caffeine. A cup of coffee or tea might pick you up. Green tea works for me. I hear from patients that prescription medicines such as Provigil can be great boosters.

At Least It Doesn’t Hurt

The good thing about fatigue is that we can be comfortable with it, as long as we have a good place to sleep.  It doesn’t hurt. Fatigue can be terribly depressing, though, keeping us from doing things we really want to do or need to do. Don’t be afraid to seek help from your doctor or a therapist or to take medicines for depression or anxiety if your MS is taking you there.

Don’t forget to breathe and to relax, meditate, or pray. Tension and stress can wear us out, and being at peace is the least tiring way to live.  For almost everyone, fatigue eventually goes away. For me, as long as I keep cool, it no longer bothers me, and I’m very thankful for that.
 

To connect with other people living with multiple sclerosis join our  MS Facebook Support Group .

 

Photo Credit: Eric Audras/PhotoAlto Agency RF Collections via Getty Images

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About the Author
David Spero, RN

David Spero, RN, became a writer and health coach after being diagnosed with multiple sclerosis in 1989. He writes books and blogs about living with chronic illness and the social causes of illness. A married father of two and grandfather of one, Spero is active in causes including health care, peace, and the environment. See his books; follow him on Medium or Twitter.

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