Activity Intolerance—A Hallmark Symptom of Fibromyalgia and ME/CFS

You are tired, worn out, and never feel energetic. Your friends, loved ones, even your doctor, says, “You just need to exercise, and you’ll feel better.” This is some of the worst advice for someone in the middle of a fibro flare or someone who has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). A hallmark symptom of these diseases is called “Post-Exertional Malaise,” a fancy name for not being able to recover from exercise, either mental or physical.

For people with these chronic illnesses, exercising affects their bodies in an unusual way. They are not able to bounce back from physical or even mental exertion. For most of us, we exercise and we’re sore or feel tired, but we recover in a few days. Exercise helps us feel more energetic, and we’re soon ready for another round. However, for people who have fibromyalgia, ME/CFS, or some other chronic illnesses, their body is just not able to recover in the same way. They exert themselves, then spend days or weeks recovering. Sometimes, they don’t recover. Exercise actually makes their symptoms worse and never better.

In the second video in her series of patient education videos, Dr. Lucinda Bateman explains this phenomenon. She discusses the concept of meeting a personal “threshold” each day. This threshold can be physical or mental exertion (or both), but it’s something that each person with these conditions needs to find personally, then make sure they do not exceed that threshold to stay in the best possible health. Dr. Bateman talks about the “push/crash” cycle, where someone is feeling pretty well, so they push through to accomplish their daily goals, which is then followed by a crash, where that person needs days and days to recover. She shows how physical and mental exertion affect bodies differently, using markers that can be seen in blood and other types of testing.

Dr. Bateman encourages her patients to use the concept of “pacing,” which she describes as having a certain amount of energy to spend each day. If you think of the amount of energy you have each day as a dollar, how will you choose to spend that dollar? All at once, possibly even going into “debt,” and needing extra days to recover? Or you can spend your energy a quarter at a time, a dime at a time, even a nickel at a time, pacing yourself throughout the day to conserve energy in your bank to be used as necessary. You might even need to save up your energy to have enough “cash” to use for a special event!

Watch Dr. Bateman’s series of patient education videos (they are free!) to understand how to find your own energy threshold and how exercise affects you differently if you have a chronic illness. In addition to this video, she also discusses getting the right diagnosis, sleep, pain, mental fog, and orthostatic intolerance.

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