Coping with Chronic Fatigue Syndrome
by Tina Coleman
While no cause or cure has yet been found for chronic fatigue syndrome, it is treatable--and some lifestyle adjustments can be made to help patients cope with this chronic illness.
You're exhausted. You find yourself unable to perform more than half the tasks you could complete easily just six months ago. You're experiencing sore throats, swollen glands, mild fever or chills, unexplained muscle aches, and weakness. You're having difficulty sleeping and you find yourself confused and unable to concentrate.
You may have chronic fatigue syndrome (CFS), a potentially debilitating, yet treatable, chronic illness that affects patients physically, emotionally, and socially. Depending upon the country, CFS is known by different names, such as myalgic encephalomyelitis, postviral fatigue syndrome, and chronic fatigue and immune dysfunction syndrome (CFIDS).
The typical CFS patient is female and in her mid-twenties to late forties. However, this condition doesn't discriminate. All ages, races, and socioeconomic groups have been affected. The U.S. Centers for Disease Control and Prevention estimates that CFS occurs in a minimum of four to 10 cases per 100,000 adults ages 18 or older.
How do you know if it's CFS?
Because there is no test for CFS and because its cause has not yet been determined, a diagnosis of the syndrome can be made only by process of elimination. "Before one assumes they have CFS, there are a number of other common medical conditions which must be ruled out," says Dale Michels, MD, a fellow of the American Academy of Family Physicians and a diplomat of the American Board of Family Practice.
If you are experiencing symptoms, visit your health care provider. He or she will review your history, perform a physical examination, and perhaps order tests, looking for a medical cause for your symptoms. If you are diagnosed with CFS, Michels says, there is currently no one medical specialty more able to treat the syndrome than another. "Family physicians are probably more uniquely capable of managing CFS because of the variety of systems involved," says Michels. "Also, a family physician generally has more awareness of the psychosocial aspects of CFS as they affect a patient."
Is this a new illness?
CFS is nothing new. It has been described in medical literature since the 1930s, and case reports of similar illnesses go back for centuries. More recently there have been reports linking CFS with the Epstein-Barr virus, HIV, environmental factors, etc., but no connections have been reported consistently, or have been identified as typical of CFS. According to information from the National Institutes of Health, the syndrome is generally not a progressive illness. Its symptoms are often most severe in the first year or two, after which they may wax and wane. The course of CFS in a patient is not predictable, but no long-term health risks have been associated with the syndrome.
While CFS sometimes begins following an illness or an emotional or physical trauma such as surgery, many cases have no obvious triggering event. Regardless of its origins, CFS can be horribly debilitating. "The fatigue is aggravated by the fact that most CFS patients do not get good sleep," says Michels. "Their sleep patterns are different from those who do not have the syndrome."
Critical elements to coping with CFS
It's vital, Michels says, to focus your efforts on getting a good night's sleep. Certain antidepressants have been found to be helpful in promoting quality sleep, and may also help those experiencing muscle aches, he says. Exercise is also important. "If a patient with CFS can get into a stretching or exercise program, using their common sense, it can be a tremendous help," Michels adds. "People in good physical condition will generally have less discomfort."
Because it's estimated that anywhere from 60% to 80% of people with CFS experience associated psychiatric disorders (most commonly depression), Michels very often recommends psychological counseling. "The combination of medical and psychological counseling is better than either alone," he says. While it's not known whether psychiatric disorders result from CFS or vice versa, counseling can be extremely helpful, particularly since many people in the general population know little about the syndrome and may be unsympathetic towards those who are struggling with it.
Taking charge of treatment
Working closely with your health care provider to manage this illness is crucial, says Michels. There is a tendency among CFS patients to grasp at straws, he says, causing some to explore or seek alternative therapies or treatment processes that may be less than scientific, some of which could even be dangerous. "Communicate with your practitioner before trying alternatives so that at least he or she knows what you are doing, what potential roadblocks you might be facing, and how your current treatment may be affected," says Michels. "Also, if you experience a lessening of symptoms, do not stop taking your medications before you talk to your health care provider."
What else can you do? The American Academy of Family Physicians, in "Chronic Fatigue: Why Am I Tired All The Time?" recommends keeping a daily diary to identify the times of day when you have the most energy in order to better plan your activities. Keep up some level of activity and exercise in consultation with your health care provider. Give yourself permission to recognize and express your feelings, such as sadness, anger, and frustration; you need to grieve for the energy you have lost. Finally, seek emotional support. It's important in coping with a chronic health problem. Look for support groups or counseling in your community.
Resources
CFIDS Association of America
http://www.cfids.org/
The American Association for Chronic Fatigue Syndrome
http://www.aacfs.org/
"Chronic Fatigue Syndrome"
National Institutes of Health
http://www.niaid.nih.gov/publications/cfs.htm
"Chronic Fatigue Syndrome"
American Academy of Family Physicians
http://familydoctor.org/handouts/031.html
Last reviewed June 2000 by Medical Review Board
