The Lyndonville Journal:

Living with CFS: The Loss of Flexibility

David S. Bell, MD, FAAP

Published in Lyndonville News, March 2001

One of the many small pleasures of life is spontaneity. The ability to make changes, to pick up and go, to be flexible. With CFS it is another one of life's gifts that can be lost. Persons with CFS, as a coping mechanism, become rigid and inflexible in an attempt to feel better. But while the loss of flexibility should be bad enough, in CFS it is compounded with the misinterpretation that the lack of flexibility is due to not caring or lack of desire. And in personal relationships, lack of love. All this from an illness that does not even get its own name.

Of the defining characteristics of CFS, the post-exertional malaise stands among the leading symptoms. This term refers to the fact that after some exertion, whether physical, emotional, or sometimes even cognitive, there comes a crash, where the exhaustion and other symptoms become worse. I have long felt that the severity and length of this crash, and the nature of the exertion, which sets it off, are indicative of the overall severity of CFS. In the milder cases, marked physical exertion can be followed the next day by a worsening of fatigue and pain, which lasts for a day or so. The irony here is that the exertion may not be so bad, or may even feel good at first. If patients with CFS were just lazy fruitcakes they would complain about having to do something, not worry that they would feel sick the next day. With more severe CFS even the exertion of emotional stress can cause a relapse. In the most severe cases, concentrating or cognitive stress can set off a bad spell. The worse the illness, the longer the relapse lasts.

Notice that I am using the term stress here. And before anyone becomes apoplectic, lets look at this term. In casual usage, we think of stress as having to do with emotions. As in, "We are weak people if we cannot cope with stress." But stress is more accurately described as any type of pressure; infections stress the body, weight stresses the muscles, exercise is a form of stress, even thinking is stress. While it may not be technically accurate, think of stress as anything that requires energy. What is unique about CFS is that with any energy utilization, there is a post-energy-expenditure penalty. You pay for it later. It's even worse than credit card debt.

Persons without CFS cannot grasp, or understand, this concept while persons with CFS understand it intuitively. Because of this, CFS patients tend to schedule their lives in a manner designed to avoid the excessive-exertion penalty. For example, Mrs. Thompson might agree to visit a friend for lunch next Tuesday, but not on Wednesday because she has a doctor's appointment later in the afternoon. A healthy person could easily do both and would not even think about it. But Mrs. Thompson must limit the exertion to a single outside event daily because of the severity of her illness. She has done it for so long it comes naturally.

Unfortunately her family and friends are unable to understand this. They see her as being rigid and unreasonable. If she can go out for lunch, she can also do something else the same day. In the extreme, this misunderstanding causes persons with CFS to lose their disability. Disability companies may assign a private investigator to follow a person to the grocery store and get it on tape. The CFS patient looks well and goes about getting the groceries and drives home. What does not show up on tape is that the CFS patient can only do this once a week; it is not a daily occurrence. And in order to do this, it requires several days of rest in the days to follow.

The real pity of this is that for some, the CFS patient must wait for a good day to go shopping for an hour or so. And that is what life is like. A good day is celebrated by going shopping. Or cleaning the kitchen. A bad day is spent in bed. It is actually amazing that not every patient with CFS is depressed.

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