Exercise Myths About Fibromyalgia and ME/CFS

Tired woman outside during a run
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It's basic physiology—when you feel sluggish, unmotivated and fatigued, getting up and doing some exercise causes changes in your body that boost your energy. Exercise also releases endorphins in the brain, and endorphins are great pain killers. So when people say those of us with fibromyalgia and chronic fatigue syndrome would feel better if we got "more exercise," there's something to it, right?

Actually, no. In normal, healthy people, yes—exercise creates energy. Problem is, we're not normal and healthy.

Exercise is a tough subject, whether you have fibromyalgia or chronic fatigue syndrome. However, it's not the same for both groups, so let's look at them separately.

Fibromyalgia and More Exercise

This myth is compounded by numerous studies showing that exercise lowers our pain levels and does, in fact, give us more energy. Doctors glance at the titles of these studies and tell the next fibromite who walks through the door to go to the gym. What they're missing is that the amount and type of exercise we need is far from what most people would even consider exercise.

If we exert ourselves to the point of exhaustion, we're probably going to trigger a major flare that lands us on the couch for days or even weeks. We all have different fitness levels so the exact amount of exertion we can handle varies greatly, but generally speaking, we should exert moderate effort for just a few minutes on a regular basis. There's ample clinical and anecdotal evidence to support that regular exercise, done with extreme moderation, helps us. That means, for us, an exercise regimen might consist of 2 minutes of gentle yoga per day. If you're in better shape, maybe you can handle a 10-minute walk or 20 minutes of aquatic exercise to start with.

A slow, steady pace is what we need. If all you can do is 2 minutes, try to be consistent about your 2 minutes. Eventually, you'll be able to handle 4. The key is not pushing yourself too far too fast, and expecting setbacks along the way.

Chronic Fatigue Syndrome and More Exercise

A key symptom of chronic fatigue syndrome is post-exertional malaise. It's a period of intense, often debilitating symptoms that follows any kind of exercise or exertion and lasts for a day or more (usually more.) Research actually shows abnormalities in the blood chemistry of people with chronic fatigue syndrome after they exercise, and those abnormalities could very well provide the long-awaited diagnostic test for this condition. Some preliminary research also shows abnormal heart rhythms during exercise, which could mean that exercise is actually damaging your health.

For years, some chronic fatigue syndrome doctors and researchers have touted a treatment called graded exercise therapy (GET). It's controversial to say the least, and while some studies have shown that it can help some people, the methods used to arrive at that conclusion are frequently called into question. Looking over the available research, it seems to me that GET is only recommended because it's more effective than most treatments that have been studied—and that's not saying a lot. However, it does help some people, as evidenced by the comment below from Dr. Donnica Moore, a well-respected expert who just signed on to work with the Whittemore Peterson Institute.

So what does all this mean about exercise and chronic fatigue syndrome? It really depends. There's clearly a reduced exercise tolerance, but you're the only one who can determine exactly what your body can tolerate. It all depends on your current fitness level and severity of your illness. We all know that being sedentary increases muscle aches and pains, so at the very least you might want to learn some simple stretches you can do while laying in bed. Because of the evidence suggesting heart abnormalities, you should talk to your doctor about testing your heart to make sure exercise is OK—here's a link to studies you can show your doctor, and they contain testing information: cardiac involvement in chronic fatigue syndrome.

What If You Have Both?

If you're diagnosed with both fibromyalgia and chronic fatigue syndrome, you're in a particularly difficult situation—the right kind of exercise may relieve some symptoms while exacerbating others. Again, you're the only one who can figure out the right level of exertion for yourself.

The Persistent Myth

The exercise myth is one that's not likely to go away—it's pretty firmly entrenched in the medical establishment, and a consequence of an uninformed public. What we need to do is know our own bodies, try to educate those who are receptive, and ignore those who aren't. We're not doing any good for anyone by overexerting ourselves and winding up in bed for a week.

Get tips for getting started with exercise, and then explore how you might incorporate yoga, tai chi, or warm-water exercise into your routine.

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