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Karen Burroughs just couldn't bounce back from a bout of the flu. The Orlando, Florida, personal trainer knew that something was seriously wrong. Previously able to do leg presses with 200 pounds, she could barely move a broom across her kitchen floor. "I was so exhausted. No matter what I tried to do, it felt like pushing a stroller through sand," she says. Plus she had achy joints, digestive problems, heart palpitations, and panic attacks. "Concentrating long enough to balance my checkbook or follow a simple recipe was impossible. Even watching TV was tough because I couldn't keep track of the plot of a show." Burroughs called her doctor, who ordered numerous tests that showed nothing abnormal. Finally he gave her a prescription: Get a hobby. "To hear such a flippant response from someone who had known me for years made me furious," she says. "My symptoms were not psychological." Still, it took a year and five doctors for Burroughs to get a diagnosis: chronic fatigue syndrome (CFS).
That was 16 years ago. And while these days it's possible to find a doctor with a less dismissive attitude, people with symptoms like Burroughs's still face big challenges as they try to get an answer to the question "What's wrong with me?" Experts estimate that at least a million people in the United States suffer from CFS, most of them women ages 40 to 59. But studies show that only 16 to 20 percent of CFS patients have sought medical care and received a diagnosis, according to the CDC. On top of that, there is no cure.
Some CFS advocates blame a medical establishment that fails to take women's complaints seriously for the fact that the disease is so misunderstood. "Patients often tell me that their previous doctor said they'd feel better if they dyed their hair or got a new boyfriend," says Nancy Klimas, MD, a professor of medicine at the University of Miami's Miller School of Medicine who specializes in CFS. "This is a very real illness and unless you have it, you can't understand how incapacitating it is."
To be fair, it's a complex disease. The symptoms are numerous and vague and mimic those of other conditions. The primary sign? A deep exhaustion that remains steady or waxes and wanes for six months. "This isn't everyday tiredness. It's profound fatigue that severely impacts your life," says Lucinda Bateman, MD, director and founder of the Fatigue Consultation Clinic in Salt Lake City. And nothing seems to help -- not sleep, stress management, or a vacation.The Diagnosis Dilemma
For a CFS diagnosis, you need that degree of fatigue plus four of the following symptoms for at least six months: substantial difficulties with memory or concentration, severe headaches, muscle and joint pain, chronic sore throat, feeling wiped out after even slight exertion, unrefreshing sleep, and tender lymph nodes. Some people may also experience trouble speaking, dizziness, and irritable-bowel issues.
The severity of the symptoms varies from person to person, although even those with mild CFS can struggle with normal activities like walking up a flight of stairs or reading a novel. And they often feel worse after making the effort. For about 25 percent of people the disease is disabling -- they're unable to leave the house or even get out of bed. "I feel like I'm under heavy sedation," says Cherice David, 40, who lives in Davis, California, and has been housebound for much of the eight years that she has had the disease. "You hear about brain fog, but for me it's more like brain mud."
People with CFS are also often put in the position of justifying why they can't just snap out of it, perhaps since the name of the condition makes friends and coworkers think that all they need is more sleep. "Since everyone's tired and they're still able to go to work and function, they wonder why you can't," says Jane Luft, a former billing manager in a St. Louis ophthalmology office who got sick 13 years ago at age 35. "I constantly had to explain that this is different. I felt one step away from a coma."
One of the main reasons doctors miss or misdiagnose CFS is quite simply that experts don't know what causes it; there are no scans, blood tests, or other ways to positively identify the disease. "Chronic fatigue syndrome remains an illness defined by a set of symptoms," says Dr. Bateman. Determining if someone has CFS is a time-consuming process that involves ruling out other conditions, such as depression, lupus, rheumatoid arthritis, sleep apnea, and underactive thyroid.Searching for a Cause
Over the years experts have pointed to many possible triggers for CFS: viruses such as Epstein-Barr, Lyme, and West Nile; hormonal system disorders; even psychological factors. They were all pretty much ruled out. Then two years ago a study in the journal Science linked CFS to a retrovirus called XMRV, giving patients and doctors hope that a test, and maybe even a cure, were imminent. But this spring three carefully designed studies showed that there is no connection.
All three reports suggested that the results of the original study were likely due to lab contamination, and the two studies that looked for XMRV in CFS patients' blood failed to find any trace of the virus. "The question is now completely settled, and we should move on and find a real cause and good treatment for CFS," says Jay A. Levy, MD, professor of medicine at the University of California, San Francisco, who is a researcher involved with one of the recent studies. He believes the answer may lie with the immune system. "When you have a cold or the flu, it's not the virus that makes you miserable, it's the by-products your immune system produces as it fights against it. If that becomes chronic, you have something that feels very much like CFS," he says. "Many different agents -- like a virus, an allergen, or a toxin -- could cause this response." It's likely that in CFS patients, the immune system continues to overreact, causing symptoms even after the trigger is gone. And there is still tremendous scientific interest in whether viruses, either known or waiting to be discovered, are possible triggers, says Dr. Klimas.
While the XMRV studies haven't provided patients or their doctors with the missing piece of the puzzle, they have put CFS back in the spotlight to help make the disease "real" to physicians. In fact, a study last year from the CDC found that 41 percent of health care providers had made a diagnosis of CFS. And while 20 percent still agreed with the statement "I believe CFS is only in the patient's head," three-quarters of them disagreed with statements such as "CFS is not as big a deal as the media makes it out to be" and "CFS patients are just depressed."
New research also shows that counseling and graded exercise (activity that starts slowly and increases gradually) can help CFS patients feel better. One British study compared how well CFS patients responded to either cognitive behavioral therapy to help them cope with their symptoms, graded exercise, or specialist treatment alone. The results were encouraging: Fifty-nine percent in the therapy group, 61 percent in the exercise group, and 45 percent in the specialist group showed significant improvement. Of course, these treatments aren't cures, and the findings do not suggest that people with CFS are simply depressed or just have to get in better shape. Instead, they're tools that can be used as part of an overall treatment strategy in much the same way they're used for other chronic conditions, like heart disease and diabetes.
"There's no one-size-fits-all solution," says Dr. Bateman. "If you're diagnosed with CFS, the best you can do is try to get ahead of it with a program that eases pain, boosts stamina, and reduces stress." Finding a knowledgeable doctor to help you figure everything out is crucial. "A good primary care physician can diagnose CFS, or you can go to an immunologist or an infectious disease specialist," Dr. Klimas says. You can often get a list of doctors in your area from a local CFS support group; contact the Chronic Fatigue and Immune Dysfunction Syndrome Association of America at cfids.org. Joining a support group is a good idea, too. "The disease is isolating," says Kimberly McCleary, president and CEO of CFIDS. "When you connect with people who understand where you're coming from, it can make all the difference."
Treatment for CFS usually starts with exercise, therapy, and a balanced diet. Depending on the person, it may also include immune-boosting supplements, such as the antioxidant CoQ10, omega-3 fatty acids (found in fish oil), and vitamin B12. Nonsteroidal anti-inflammatories like ibuprofen may help reduce pain, and antidepressants can make sleep more restorative. A drug called Ampligen, intended to jump-start the immune system, is on the horizon. It's not specifically for CFS but clinical trials show it reduces fatigue and increases energy. The manufacturer has applied for FDA approval.Responding to Treatment
A CFS diagnosis doesn't mean all hope is lost: Five to 10 percent of patients go into total remission and 40 to 60 percent improve to the point where they can return to work and other activities, according to the CDC. But setbacks often follow periods of improvement, as was the case for DeAnn Starling. When she first got sick in college, she could barely walk from her bed to the bathroom. But with treatment the Murfreesboro, Tennessee, resident began to have more good days than bad. While it took her longer than normal to finish school, she graduated, went to law school, passed the bar, and worked as a lawyer. Then she started a family, raising two children and working on legal projects when she felt up to it. "I found a terrific doctor who helped me figure out when to push through the pain and when to stay in bed," says Starling, 47. Though the illness forced her to table work and cut back on daily activities for now, she has an upbeat attitude. "I think if my family feels loved, it doesn't matter if the dishes are dirty, the laundry piles up, or we have sandwiches again for dinner," she says. "I've accepted the fact that only half of what I plan to do will ever get done."
Shanley Crutchfield, a former athlete from Baltimore, has fared better. "I was a zombie at first," says the 25-year-old. "I took uppers to wake up and sleeping pills to fall asleep, painkillers for migraines and muscle pain, and antidepressants." With the help of a new doctor she got on a more tolerable and effective treatment plan and slowly began to improve. Today she works full-time in an engineering office, coaches youth soccer twice a week, and takes classes one night a week. "I'm one of the lucky ones," says Crutchfield. "I have to pace myself because when I do too much, my body knows it immediately. But I got my life back."
It's only 3 p.m. but you're so tired that you feel as though you could lie down now and sleep until tomorrow afternoon. Don't panic: Even exhaustion that extreme isn't necessarily a sign of chronic fatigue syndrome. "For most people, fatigue is due to stress, overwork, or lack of exercise or sleep," says Anthony Komaroff, MD, professor of medicine at Harvard Medical School and a CFS researcher. "Just 2 to 5 percent of people who seek medical care because of feeling tired actually have chronic fatigue syndrome." How can you tell the difference? Answering the following questions may yield important clues.
If you've answered yes to question 1 and at least four of questions 2 through 7, see your doctor. You may have chronic fatigue syndrome or another condition that requires medical attention.
Originally published in Ladies' Home Journal, September 2011.