Chronic Fatigue Syndrome: An Elusive Disease
A normally healthy women suddenly becomes ill. She is so tired she can barely lift her head off the pillow, but no one can diagnose her symptoms, other than to attribute them instead to menopause or nerves. Is this a figment of her imagination?
The patient is usually a Caucasian woman in her mid-thirties. She's active and busy trying to manage a family and a job. Once healthy, both medically and emotionally, she suddenly comes down with a flu-like illness, in which she has a fever, swollen lymph glands, and a sore throat. She experiences an extreme fatigue that is so debilitating she can no longer perform her daily tasks; getting out of bed is even a chore.
But the symptoms don't go away like they do with the flu. They wax and wane for months or even years. Her doctors find no cause for her symptoms. Finally, she is told she has chronic fatigue syndrome, a condition about which little is known or understood. According to Benjamin Natelson, MD in his book Facing and Fighting Fatigue , this is the story of a typical patient suffering from chronic fatigue syndrome.
A Chronic Condition
Chronic fatigue syndrome (CFS) is a debilitating condition characterized by extreme fatigue that doesn't go away with rest. Other common symptoms of CFS include weakness, muscle pain, impaired memory, and sleep disorders .
The Centers for Disease Control and Prevention (CDC) reports that CFS affects more than one million people in the United States. And although no one knows exactly why, it is diagnosed two to four times more often in women than in men. It may be that women are genetically predisposed to CFS, as they are with lupus. Or it may be that women report their symptoms to their healthcare providers more frequently than men do.
A Difficult Diagnosis
CFS is extremely difficult to diagnose. There are no laboratory tests to identify the condition, and CFS shares many of its symptoms with treatable illnesses, often being confused with:
- Sleep apnea
- Chronic mononucleosis
- Eating disorders
- Autoimmune disease
- Substance abuse
- Mental illness
In fact, CFS is diagnosed only after these diseases are ruled out and no other cause for the symptoms is found.
The first step in diagnosing CFS is to obtain a detailed medical history and perform a complete physical exam, followed by a standard battery of tests. If any of the tests suggest a possible explanation for the symptoms, additional tests are conducted to confirm a diagnosis. If no cause for the fatigue is identified, the doctor moves toward a diagnosis of CFS.
Despite its reputation as a vague disorder, the diagnosis of CFS is structured and is made only if a patient meets all of the following criteria:
- Long-term fatigue: severe, unexplained chronic fatigue lasting six months or longer that is not due to ongoing exertion, is not relieved by rest, and results in a substantial reduction in previous levels of activity
- A unique collection of four or more symptoms occurring at the same time, including:
- Impaired short-term memory or concentration
- Sore throat
- Tender lymph nodes
- Muscle pain
- Multi-joint pain without swelling or redness
- Headaches of a new type, pattern, or severity
- Unrefreshing sleep
- Post-exertional malaise that lasts more than 24 hours
These symptoms must have lasted or recurred during six or more consecutive months and must not have occurred before the fatigue.
The cause of CFS remains unknown. Scientists have not been able to find any single marker for the condition. Rather, current research suggests that CFS is the result of many factors.
In an article in New Jersey Medicine, Richard Podell, MD, states one common hypothesis, "CFS starts with an acute viral infection. We speculate that there are immune system abnormalities that activate metabolic systems that normally are triggered when a person, for instance, fights a flu. But then the body forgets to deactivate them." This, in turn, causes an imbalance that is characterized by the typical symptoms of CFS.
Just as there is no known cause for CFS, there is no known cure. There are, however, treatments that may be somewhat helpful.
Stress is known to worsen the effects of CFS and is thought to provoke relapses. Patients can avoid stress through the following behavioral modification programs.
- Develop a daily routine. A regular, manageable routine helps to avoid the fatiguing "crash" that follows the "high" experienced by periods of good health. Without a regular routine, people with CFS tend to overexert themselves when their symptoms lessen, but then suffer from extreme fatigue caused by the overactivity.
- Initiate proper sleep habits. One of the most effective ways to manage CFS is to eliminate stress factors that cause a disruption in sleep. Doctors recomned having a regular bedtime, avoiding too much alcohol and caffeine , eliminating sedatives, and avoiding eating late.
- Lose weight. Extra weight means extra work to move around. Extra girth around the neck can block air passages during sleep, which can lead to sleep apnea. Doctors advise patients to start a weight loss plan with the help of a dietician.
- Start an exercise program. Pacing is critical in managing CFS. Doctors encourage slowly starting physical activity. This can mean something as simple as a walk, stretching, tai chi, or yoga.
- Therapy. Trained rehabilitation therapists can help patients set goals and design strategies for saving energy and improving function.
- Counseling. Cognitive restructuring is one effective technique that teaches patients how to gain control over their emotions. It stresses the importance of eliminating negative thoughts. Natelson explains in his book, "The treatment offers the CFS patient new and effective coping mechanisms to confront the often self-defeating option of staying in bed. And just the thought of taking control of one's life makes any chronically ill patient feel better."
Drug therapy is used to relieve specific symptoms. Currently there are several prescription medications being used to treat CFS patients. They include:
- Medications to improve sleep (such as Ambien and Lunesta)
- Antidepressants to treat accompanying depression and possibly to increase energy, for example: Prozac (fluoxetine), Zoloft (sertraline), Paxil (paroxetine), Effexor (venlafaxine), Desyrel (trazodone), Wellbutrin (bupropion)
- Anti-anxiety agents, such as Xanax (alprazolam), to treat panic disorder
- Nonsteroidal anti-inflammatory drugs to relieve pain (such as ibuprofen or naprosyn)
Natelson offers the following tips for coping with CFS:
- Find an understanding healthcare provider.
- Question the miracle cure or curer.
- Enlist the help of a coach to develop coping strategies.
- Develop a strong support network.
- Have a positive attitude.
The course of CFS varies from patient to patient. While some people spontaneously recover, others continue to have symptoms that come and go. However, some improvement over time is the rule, rather than the exception. To help cope with what seems to be an incurable condition, Natelson advises his patients to laugh. He says, " Laughing is positive, whereas weeping is negative. Putting more ticks on the positive side makes coping easier and reduces symptoms."
CFIDS Association of America
The Chronic Syndrome Support Association
International Association of CFS/ME
Chronic Fatigue Syndrome
Women's Health Matters
Chronic fatigue syndrome. Clinical practice guidelines—2002. Med J Aust. 2002;176(suppl:S23).
Kim E. A brief history of chronic fatigue syndrome. JAMA. 1994;272:1070.
Natelson B. Facing and Fighting Fatigue: A Practical Approach. New Haven, CT: Yale University Press; 1998.
Schmidt M. Tired of Being Tired: Overcoming Chronic Fatigue and Low Energy. Berkely, CA: Frog, Ltd; 1995.
Last reviewed May 2008 by Marcin Chwistek, MD
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
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