You're tired. Really tired. Here's what to know about chronic fatigue syndrome

I frequently receive emails regarding mysterious medical conditions like fibromyalgia, illnesses that seem to fall through the cracks and are not taken seriously by many members of the medical community. Another example is chronic fatigue syndrome, an unfortunate name that allows it to be easily dismissed as everyone has experienced fatigue, but it's really so much more.

The technical name for CFS is myalgic encephalomyelitis, a long-term illness that can negatively impact many systems of the body. The number of folks who suffer from this illness is not known, but estimates range up to 2.5 million Americans. One reason for the uncertainty is the difficulty in diagnosing the problem. For example, there may be severe fatigue, but that can be caused by many things. The same is true for sleep problems, muscle and joint pain, dizziness, trouble concentrating, etc.

What is chronic fatigue syndrome?

CFS is something I encountered first-hand back in the early 1980s, and it makes for an interesting story. My former wife, Joy, who died of cancer, was a much-loved professor at the University of Louisville, teaching those seeking to become Special Education teachers. She also was very active in promoting the causes of those with disabilities, locally and nationally. In a nutshell, she was vibrant, highly active, and dedicated, and would go to any lengths to fight the good fight when it came to protecting the rights of others.

Then one day she awoke with an odd feeling.

She spoke of overwhelming tiredness, a degree of tiredness she had never experienced. In addition, she had trouble moving her left shoulder. This was odd as she normally awoke with great optimism and a long list of things to accomplish, plus she never complained. I wrote it off as her working too hard and she simply needed a break from the many “hats” she was wearing that spread her too thin.

But things got worse. The sense of tiredness and fatigue increased and she could barely get out of bed in the morning. Then she was struck with severe flu-like symptoms that lasted about two weeks. We thought this might be the cause of the fatigue. Not so, as the flu ended but the fatigue persisted.

Then the flu returned a few weeks later, stronger than ever, and lasted another two weeks, plus her shoulder was still partially frozen.

So, what was happening?

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How does chronic fatigue syndrome impact one's life?

Obviously, she needed medical attention and went to a trusted doctor she had known for years. He offered a sympathetic ear but could find no "medical reason" for her condition. She tried to keep teaching, but could not continue, and was forced to take a medical leave. When the flu returned a third time, she went to a specialist who ran blood tests and concluded she had mononucleosis that would run its course and she would feel better in the months ahead.

He was wrong.

This roller coaster ride of ups and downs continued for several more months and she went to another specialist, who offered the same result from blood tests – mononucleosis. She was again told that it would run its course and would gradually begin to feel better. When she explained to the doctor what she had experienced for nearly a year and that this couldn’t be mononucleosis, he shrugged and told her to go home and take a hot bath.

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She went to another highly respected specialist from out of state with similar results. This time he took the stance that she was trying to get out of work and wanted medical disability, but he could find no reason to support this. This was the peak of absurdity as Joy loved teaching and was desperate to return.

Finally, the flu-like illness went away, but the extreme fatigue stayed and was overwhelming, as was the frustration with medical professionals. Despite her fatigue, Joy took it upon herself to investigate the issues. She was brilliant and had nearly total recall of everything she read, and she read constantly.

Finally, she uncovered information that suggested she could be suffering from a bizarre and rare disease tentatively called chronic fatigue syndrome, an odd name. She dug and dug trying to find out all she could, but information was limited.

I went to my former editor at the Courier Journal and pitched a story about this disease, hoping to uncover others out there who may be suffering in a similar way. The story ran on the front page of the Sunday Features section and the response was overwhelming from folks who had been suffering for years and who encountered similar problems with medical professionals. This provided Joy some relief, knowing she was not alone, and it gave her a new battle to fight.

As she got stronger, she started giving talks all over the country, telling her story and getting the word out that CFS isn’t all in your head, and that you are not a hysterical female needing to calm down and relax in the bathtub. I might add that although the vast majority of sufferers are middle-aged women, it can strike men as well.

How does one test for chronic fatigue syndrome?

Thankfully, after several years, Joy overcome her illness and returned to her "normal" self.  How and why CFS started and stopped remains a mystery to this day, 40 years later. But at least CFS is recognized today as a serious problem, and not dismissed out of hand.

Unfortunately, and in fairness to medical professionals, a diagnosis is quite difficult. It is essentially made by default, ruling out other medical conditions, plus the presence of chronic tiredness lasting more than six months, and four or more symptoms (as cited above) are evident.

Regarding treatment, there is nothing specific, other than promoting the healthiest lifestyle possible, getting plenty of rest, dietary and herbal preparations, being somewhat physically active but not pushing it, and treating symptoms as best you can. In addition, psychotherapy or group counseling is strongly recommended for depression, plus it is very helpful to know that you are not alone in your suffering and that your condition is real.

Reach Bryant Stamford, a professor of kinesiology and integrative physiology at Hanover College, at stamford@hanover.edu.