Chronic Fatigue

Chronic Fatigue
Syndrome

Sorting through the Symptoms

You're exhausted. Your head aches, your muscles hurt, your memory's shot, and you can't seem to shake that cough you got when you had the flu last month.

You know you're going to feel better soon. After all, it was just the flu. But imagine waking up and feeling that way every day for the rest of your life. What would you do?

That's exactly the question that women with chronic fatigue syndrome (CFS) ask themselves every morning, says Anthony Komaroff, M.D., professor of medicine at Harvard Medical School and director of the Chronic Fatigue Syndrome Research Center, funded by the National Institutes of Health, in Boston.

"They're perfectly fine and then one day they come down with a bad cold or the flu. They have a fever, aching muscles, sore throat, maybe a cough. And instead of getting over it like they did with every other flu they've ever had, they never do."

They're not contagious or overtly ill, but the fatigue forces them to reduce their normal activities by 50 percent and rest whenever possible. Many women also have difficulty thinking and concentrating, or they may become forgetful, confused and excessively irritable. They may also have aching muscles, a sore throat, mild fever and swollen glands.

One thing they are not, however, is depressed.

Some researchers had initially suspected that CFS was "all in the head" and that the disease was actually a form of depression, says Dr. Komaroff. But "the majority of our patients at the research center, even though in some sense their lives have been ruined, are not depressed.

"It's amazing," he adds. "If from out of the blue I suddenly couldn't work, if I couldn't play ball with my kids, if I didn't have the energy to be a vigorous social partner to my wife--if all of those things happened and I was suddenly disabled--I would be depressed. But the majority of our patients are not."

Looking for Some Answers

Chronic fatigue syndrome is still a mystery, says Ann Schluederberg, Sc.D., former chief of the virology branch in the Division of Microbiology and Infectious Diseases at the National Institute for Allergy and Infectious Diseases in Bethesda, Maryland. Since the mid-1980s, scientists have discussed what symptoms are actually caused by CFS, how many people it might affect, whether it affects more women than men and which laboratory investigations might actually lead to the cause.

"Laboratory tests suggest that an overly active immune system might be important in how the disease gets started," says Dr. Schluederberg.

"Although no one knows the cause of CFS, research has been able to make two observations," says Dr. Komaroff. "One is that the immune system looks as though it's chronically turned on, as though it's fighting a war against something. The second observation is that certain immune system cells, perhaps because they're constantly fighting this war, simply aren't functioning at normal levels. They're not knocked out completely as they are in AIDS, but they're clearly not working as well as they should." It's almost as though they're suffering from a case of battle fatigue, he adds.

Sleep Interference

Most people with CFS have difficulty sleeping, says Dr. Komaroff. "Brain wave studies in sleep laboratories show that people with CFS simply don't get the deep, restorative sleep they need in adequate amounts. In fact, almost 90 percent of those with this illness say that even if they've slept well, they never get up in the morning feeling rested.

"All of us have those mornings," adds Dr. Komaroff. "But these people feel that way every morning of their lives."

Fortunately, a class of prescription drugs called tricyclics--such as Elavil, Tofranil and Norpramin--can improve the quality of sleep, says Dr. Komaroff. "Tricyclics have two uses in medicine," he explains. "When used in high doses, they're antidepressant drugs. When used in low doses--about one-tenth of the antidepressant dose--they improve the quality of sleep."

Doctors don't know how they work, but they do know that the benefits to those with CFS are more than just a good night's sleep. Whether it's the sleep or the medicine, people who take tricyclic drugs also seem to have fewer CFS symptoms--particularly the ones that affect thinking, remembering and concentrating.

Does tricyclic-aided sleep somehow rest the battle-fatigued immune system in someone with CFS?

Researchers aren't sure. "Throughout medical research there is now growing evidence that the immune system is different in certain respects during sleep and wakefulness," says Dr. Komaroff. "But although sleep and the immune system may be connected in some ways, we're just beginning to understand what's going on.

"My very sophisticated, scientific, medical belief is like my grandmother's when she said that if you don't get a good night's sleep you're going to catch things. Her perception was that poor sleep leads to some kind of immune problem, which leads to infections. I think that when we understand science better we'll prove that my grandmother was right."

Living with CFS

It's pretty difficult to do anything about a disease when scientists can't figure out what's causing it, doctors say.

But the fact that CFS is so much a mystery is the very reason that it's important for people who suspect they have the disease to see a doctor, says Orvalene Prewitt, president of the National Chronic Fatigue Syndrome and Fibromyalgia Association in Kansas City, Missouri. Many different diseases--such as cancer, anemia, depression and hepatitis--can cause the same type of overwhelming fatigue that occurs in CFS. And without constant medical monitoring, these conditions could go undetected.

What's more, people who have CFS should see their doctors every six months, adds Prewitt--just to make sure that their CFS isn't hiding the symptoms of some other, more treatable disease.

Until there is a treatment for CFS, here are several strategies that have helped those with CFS get through the day. Most work by dealing with particular symptoms of the syndrome, such as fatigue, pain or disrupted sleep.

Slow down. "As a general rule, maintaining an even, throttled-down pace--to the extent that life allows you to do it--will protect you against the physical, emotional and intellectual stresses that can just consume someone with CFS," says Dr. Komaroff. But if you're forced to go all-out on one particular day or another, make sure you rest the next. Give yourself a break.

Be inventive. Jill Anderson, R.N., Ph.D., a clinical nurse specialist at the University of Illinois in Chicago who is studying women with CFS, has found that people with CFS are good at figuring out how to save energy.

For instance, a teacher Dr. Anderson interviewed uses a luggage carrier--the kind flight attendants use to haul their bags around airports--to move her briefcase, books and other teacher-type paraphernalia from one classroom to another. She also naps in her car at lunch.

A second woman with CFS has a machine answer all her calls, then returns them as she has the energy. A third woman who finds reading exhausting orders books on tape from her local library.

Other women use paper plates to cut down on kitchen work, order stamps by mail to avoid a trip to the Post Office and buy clothes from a catalog to avoid shopping. Still others have groceries delivered and tape TV programs on a VCR, then replay them when they can concentrate.

Get connected. Dr. Anderson also found that women with home computers have logged onto the Prodigy on-line computer service to access the Medical Support Bulletin Board. This electronic bulletin board allows subscribers to network with people with various medical concerns, says Dr. Anderson. Once connected to the bulletin board, women can select the CFS option from the menu and read messages organized by subjects like "ask the doctor," "advice needed," and "CFS and insurance."

Without expending any more energy than it takes to sit and type, someone connected to the Medical Support Bulletin Board or on-line services can learn how others feel about having CFS, how they handle family relationships and the tricks they use to cope with life.

Listen to your body. Some people with CFS find that various foods--especially those containing caffeine, alcohol or sugar--aggravate the syndrome, says Dr. Komaroff. Others say that foods have no effect.

"I tell people to listen to the wisdom of their own bodies," he says. If it bothers you--if you feel even more fatigued in the hours after eating something than you usually do--then don't put it in your mouth. If it doesn't bother you, have a ball. Interestingly, 97 percent of all Dr. Komaroff's patients have become teetotalers since the onset of their illness.

Use painkillers. "The headaches, muscle pain and joint pain should be treated with nonsteroidal anti-inflammatory medications like aspirin and ibuprofen," says Dr. Komaroff. Check with your doctor regarding the appropriate dosage.