 |
Illustration by Casimir Krupinsky.
|
|
Body Dimensions: Chronic Fatigue Syndrome
The Mystery of Chronic Fatigue Syndrome
Imagine the feeling of exhaustion after running the New York City Marathon—your body begs for rest, but the pain of sore muscles keeps you from doing so. Now imagine waking up every morning in this same state, to a world where sleep, when it happens, is merely a short break from daily debilitating fatigue. While 60-year-old Donna Bedits is far from running any marathons, for her, each moment feels like she just crossed the finish line—tired, sore and lucky to get a few hours of activity in a day.
It was the mid-80s and Bedits, a type A personality who says she always “wants things done yesterday,” was enjoying a successful career as a registered nurse when she began to experience unexplained fatigue. Her diagnosis: “You’re in your 40s now,” as one doctor put it. Then in 1992, Bedits had a severe episode of what appeared to be the flu, exhibiting a high fever and extreme body aches, but strangely no congestion, sore throat or coughing. “I couldn’t even lift my head off the bed for three days,” she says. When the condition subsided, the comparatively mild fatigue she had previously experienced was now a full-fledged disabling illness. After years of tests, Bedits was diagnosed with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), also known as Chronic Fatigue Syndrome (CFS).
At this point in her story, you might expect Bedits to receive treatment for her condition and continue with life as normal, but there’s only one small problem with that scenario—there is no cure for CFIDS. In fact, no one even knows what causes the syndrome. “I was forced to re-learn how to live my life, something I still haven’t fully embraced,” says Bedits whose mysterious condition isn’t as rare as you might think.
Bedits is one of over a million Americans who have been diagnosed with CFIDS. Yet research conducted by the Centers for Disease Control and Prevention (CDC) indicates that less than 20 percent of those who have CFIDS in the U.S. have been diagnosed. And the economic impact of the syndrome is severe, estimated to be $9.1 billion in lost productivity annually in the U.S., according to a 2004 independent study.
It’s staggering statistics like these that motivated the CDC and the CFIDS Association of America to recently team up and launch a four million dollar public awareness campaign. “It’s the first national CFS awareness campaign in the history of the illness,” says Marcia Harmon, Director of Communications for the CFIDS Association of America. Harmon and others hope the campaign will not only increase the nation’s diagnostic rate of CFS, but also educate family members and physicians about the debilitating illness.
More Than Being Tired
At some point, most of us have felt exhausted after a long day, but there’s more to CFIDS than just feeling tired. “If you go to the mall and ask people if they’re tired, probably about 70 percent will say ‘yes,’ but it’s not the same,” says Dr. Mark Lupo, a local endocrinologist who has tested many possible CFS patients for thyroid disease, a condition which shares similar symptoms. The fatigue must not only be severe, meaning incapacitating, but also chronic, lasting at least six months he says.
Those who suffer from CFIDS also have difficulties with memory and concentration. “I remember being on the phone at work one day, and after holding for several minutes a woman came on the phone to answer my call. I went to introduce myself and I drew a blank. I literally had forgotten my own name. We both laughed, but after I hung up the phone, I put my head down and cried,” says Bedits who thought she was experiencing an early onset of Alzheimer’s.
The most notorious pattern seen in CFIDS is when a person suddenly comes down with a flu-like illness that doesn’t go away. These viral or bacterial infections can suppress the body’s master gland, the hypothalamus, which leads to yet another common symptom, unrefreshing sleep. The body confuses its day/night cycles causing people with CFIDS to have trouble staying in the deep, restorative stages of sleep that “recharge their batteries.”
Other characteristics of the syndrome include persistent muscle pain, joint pain (without redness or swelling), headaches, tender lymph nodes and a sore throat. And if a CFIDS patient overexerts themselves either mentally or physically, they cannot just sleep it off like most. Instead they will experience a relapse or worsening in their symptoms, which requires an extended recovery period.
Diagnosing a Mystery
While the signs of CFIDS are clear, the problem is that literally hundreds of diseases share a similar spectrum of symptoms. And unlike many conditions where a simple blood test can provide all the answers, a diagnostic test does not exist for CFIDS. “A diagnosis of CFS is a diagnosis of exclusion,” says Lupo.
After testing for seven years before she was finally diagnosed with CFIDS, Bedits says she must have undergone hundreds of tests to rule out other options. “Sometimes I wish doctors would have found something like Lyme disease or MS, because at least then I would have answers,” she says.
Today, after all other possibilities have been excluded, physicians rely on the 1994 case definition of CFIDS to make a diagnosis. This criteria calls for four out of the eight major symptoms to be present along with fatigue that interferes with physical, mental, social and educational activities. Both the fatigue and symptoms must have occurred for at least a six month period.
Trying to Find Answers
Perhaps the biggest mystery surrounding CFIDS is why it happens. Despite an intensive, nearly 20-year search, the exact cause remains unknown. Much of the ongoing research centers on the roles of the immune, endocrine and nervous systems, and more recently the interactions among these factors.
In April, the CDC released a report at the conclusion of the largest clinical trial ever to focus on CFIDS. The study strengthened the idea that the mysterious ailment is actually a collection of five or more conditions with varying genetic and environmental causes, but pointed to one important common feature in particular: The brains and immune systems of those with CFIDS do not respond normally to physical and psychological stresses. Though the results are weak, the study’s scientists suggest that CFIDS may be the result of a predisposition to handle physical or emotional stress poorly.
Another theory (an extremely controversial one) is that CFIDS is nothing more than a psychological dysfunction caused by depression. “Doctors ask me if I’m depressed. Well you’re damn right I’m depressed. You would be too,” says Bedits. While there is no doubt that severe depression can cause most of the symptoms of CFIDS, there are many patients without depressive signs, suggesting that depression is not a direct cause of the symptoms. “It’s not the depression causing the symptoms, it’s the symptoms causing depression,” says local Dr. Carol Fisch, an emeritus adjunct professor of laboratory science for Michigan State who taught for 18 years before her condition as a CFIDS patient forced her to quit.
Other studied causes include viral triggers; nearly all of which, the most notable being the Epstein-Barr virus (the disease that causes Mono), have been excluded because of their relative commonness in the general population and the inability to link any pathogen to all cases, immune system abnormalities; none has emerged as a diagnostic marker, neurological irregularities, and endocrine dysfunction. Though researchers continue to find links, none are strong enough to be considered the single cause of CFIDS. “From what I have seen, the condition is a combination of a number of things, but most of the symptoms seem to be related to the immune system,” says Dr. Philip Nelson, a recently retired local physician who at one point had 400 CFIDS patients from surrounding areas, including his wife who was diagnosed in 1986.
Finding Help
Treating CFIDS can be as complicated as the ailment itself and it presents a significant challenge for patients and their physicians. Besides the fact that there is no cure and no prescription drugs developed specifically for CFIDS, there’s also the fact that symptoms can vary considerably over time. Treatment strategies must constantly be revised. “Very few physicians are interested, because either they don’t understand the illness, don’t want to take the time to treat it or think it’s just a psychological problem,” says Nelson.
But even among these challenges, Bedits says if there’s one thing she wants people to know, it’s that there is hope. Today, Bedits shares that positive outlook with locals as a co-leader of the Chronic Fatigue Syndrome/Fibromyalgia Support Group of Sarasota. The group, which now has over 100 members, meets monthly at Doctors Hospital to hear speakers and have discussions to help cope with their diagnosis. Those interested in attending a meeting can call Bedits at 941-378-0547.
Mindy Hellmann also a co-leader of the support group with Bedits says she cannot think of a single doctor who is accepting new patients with CFS in the area, and sends out a call to action. “I challenge any doctor to take new CFIDS patients in the area, and I guarantee their practice will be full within 48 hours.”
Generation Awareness: Combating Daily Fatigue
20s to 30s
Whether it’s working overtime to get the promotion at work, making sure the kids make it to school on time or dealing with the loss of a loved one, almost everyone has some kind of stress in their lives. And if you’ve ever felt like you needed an afternoon nap before lunchtime, you know that stress can be a major contributor to feeling fatigued, but it’s not the only culprit. “Often fatigue boils down to not taking care of yourself,” says Lupo who reveals that getting a good night’s sleep, exercising and eating a balanced diet are just as important as managing stress levels.
40s to 50s
While prolonged fatigue may be the result of an underlying medical condition, many women experience the symptom as a result of (surprise) a hormonal imbalance—i.e. menopause. Typically, the fatigue is a result of insomnia, which is caused by a decrease in estrogen. However, a lack of progesterone, the hormone that keeps women energized and accounts for their sexual drive, also leaves women feeling exhausted or sick. Men are also at risk for these symptoms as they go through their own form of menopause, known as andropause. If natural remedies such as exercise, maintaining a balanced diet and getting adequate sleep aren’t effective, consult your doctor about the possibility of hormone replacement therapy.
60s and Up
Growing older certainly involves a variety of life stressors that can lead to depression, one of them being loneliness. A study released last year by the University of Michigan found that nearly 60 percent of senior citizens age 70 and older experience some form of loneliness. But according to The Doctors Book of Home Remedies for Seniors, socializing can be a powerful weapon in the fight against fatigue—found to not only improve mental ability and mood but also the amount of deep sleep. Try joining a hobby group or doing some volunteer work to bring a whole new incentive to daily life.
LEARN MORE:
Whether you’re a patient, caregiver, student or CFIDS advocate, learn more about the syndrome by attending this year’s International Association for Chronic Fatigue Syndrome (IACFS) conference in Fort Lauderdale from January 10-14. Attendees will leave with well-proven tools and skills for improved management of this challenging health issue, as well as a better understanding of the syndrome itself. Speakers for the conference include the IACFS Board, internationally recognized leaders in various CFS healthcare fields and nationally recognized professionals in fields relevant to the CFS patient community. For more details or to register for the event, go to www.aacfs.org or call 847-258-7248.
FIBROMY-What?
Many who suffer from CFIDS share a number of symptoms with a similar condition called fibromyalgia, a chronic pain illness characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances. Research shows that between 50 and 70 percent of people with fibromyalgia also fit the criteria for CFS and vice versa. However, there are a few key differences. Whereas CFS tends to have a flu-like onset, fibromyalgia is often traced to an injury or physical or emotional trauma. Researchers have found that people with fibromyalgia may have abnormal levels of several chemicals, such as substance P and serotonin, used by the body to transmit and respond to pain signals. Also, people with only CFS do not have the same tender points as those with fibromyalgia. This is why it’s important to seek a physician who is knowledgeable about both conditions as it easy for patients with CFS to be wrongly diagnosed.
By Amanda Kanaan.
Read Next Acquire Feature
To access all SRQ articles, become a magazine subscriber today!
|
|
