Let’s face it: Modern American life can be exhausting. Our datebooks are crammed with commitments, lists of errands, to-do lists. And if you’ve got kids, you’re doubling-or even tripling-the whammy, as you drive that minivan on an endless round of swim meets, dance performances and piano lessons.
As a result, most of us spend an inordinate amount of time grousing about our energy levels. We might even be in a slight competition with our spouses, for example: “God, I’m tired.” “Oh, yeah? Well, I’m tireder.” And with tiredness comes a host of other nebulous symptoms: neck and shoulder pain, stomach upset, headaches and-somewhat ironically-bad sleep. You’re not really dying, you presume, but sure feel like you’ve been hit by a truck. At what point, you think, do I stop kvetching and see the doctor about this stuff?
It’s safe to say that there is a lot of controversy surrounding the two most common fatigue disorders-chronic fatigue syndrome and fibromyalgia, both of which usually include symptoms of irritable bowel syndrome. But one thing experts agree on: It’s probably not in your best interest to diagnose these on your own. “It’s important to rule out other conditions,” says Steven Orkand, M.D., chief of rheumatology for Kaiser Permanente. For example, he says, you can feel achy and tired because of thyroid problems, rheumatoid arthritis, multiple sclerosis and lupus. Simple fatigue can also be caused by mononucleosis, depression, sleep apnea and acute infections-to name but a few. And more serious things that can affect your gut are inflammatory bowel diseases-like ulcerative colitis and Crohn’s disease-or even colon cancer.
Whoa, whoa, whoa, you say, cancer?! And indeed, many people with these types of nebulous disorders initially arrive panic-stricken in a doctor’s office, fearing the worst. “These cases are complicated because often patients are worried about cancer,” says Walt Trudeau, M.D., clinical professor of medicine at UC Davis. “Also, they end up receiving Herculean work-ups, because there are so many diseases that can cause [these symptoms]. There are a lot of things to rule out.”
Making it worse is that there are presently no definitive lab tests to confirm the existence of CFS, fibromyalgia or IBS. Instead, the diagnoses are most often made after an exhaustive round of negative tests, careful health histories and physical exams. And getting to that point can sometimes take months-or even years. Which is not to say, however, that physicians make these diagnoses in lieu of checking the box, “who knows.” “I’m a scientist,” says Stanley Naguwa, M.D., clinical professor of rheumatology at UC Davis. “And I follow the CDC (Centers for Disease Control) definition of chronic fatigue syndrome and the ACR (American College of Rheumatology) criteria for fibromyalgia. Sometimes I have to tell patients-who think they have one of these disorders-that they don’t fulfill the criteria.”
But the lack of conclusive lab tests also doesn’t mean these disorders are fictitious. “Fibromyalgia is not a psychosomatic illness people wish upon themselves,” says Orkand. “It’s a real physical condition.” And it’s possible research will soon better validate this belief for both patients and their physicians. “In five to 10 years, we’re going to start to develop better tests, and the cause of these disorders is going to be more obvious,” says Michael Powell, D.O., a rheumatologist with a private practice in Sacramento, who compares these mystery disorders to the early research stages of tuberculosis or HIV/AIDS.
And interestingly, it’s important to realize none of these disorders is “new”-conditions with similar symptoms have been perplexing medicine for hundreds of years.
Cracking the Mystery
Medical professionals are either irritated or intrigued by the wax-and-wane nature of fatigue syndromes and IBS. “Most physicians don’t like dealing with [these disorders],” says Trudeau, “because the patients are often difficult and take a lot of time. Patients are also frustrated with the medical community, because there is no magic bullet, no specific test. And there seems to be a big association with stress-so it takes time to sort that out, see how it relates.”
On the other hand, there are those who see cracking this mystery as their life’s work. “It’s the greatest who-done-it in medicine,” says Powell.
Most of the current thinking on the subject of fibromyalgia, for example, seems to be that it is a central nervous system abnormality that results in pain amplification. “There’s strong evidence these people have an increased sensitivity to pain-their nerve cells are also more sensitive to light, sound, heat, cold, touch,” says Orkand. Similarly, multiple lab studies have suggested the central nervous system plays a role in CFS. Physical or emotional stress-often reported as preceding the disorder-activates the hypothalamic-pituitary adrenal axis, leading to increased release of cortisol and other hormones. Finally, the lining of the colon is affected by the immune and central nervous systems. In IBS patients, the colon responds strongly to stimuli-such as foods or stress-that wouldn’t bother most people.
There also is interest in the role of sleep-specifically, researchers have long pondered if poor sleep is a symptom or a primary cause. “Way back when, there was a study done at the University of Toronto,” says Naguwa. “And it looked at whether nonrestorative sleep affected cognition. They hooked up college student volunteers in a sleep lab, then administered low electric shock-not enough to wake them, but it interrupted their sleep. When they woke, volunteers’ cognitive abilities were impaired, but they also complained of musculoskeletal pain.” And at least anecdotally, many fatigue and IBS patients say their symptoms get worse with poor sleep, then improve when sleep is better.
Other theories receiving local attention-although not well-documented in medical literature-involve common infectious organisms that can overgrow in certain individuals during times of stress. “One of the stealth infections we find overgrown in most fibromyalgia patients is Chlamydia pneumoniae,” says Powell, who has begun treating some patients with low doses of combination antibiotics.
Figuring Out Treatment
If diagnosis and causes are hard to pin down, treatment is no easier. In fact, there are no clinically accepted cures for CFS, fibromyalgia or IBS, and treatment is mostly aimed at relieving symptoms. These can include sleep medications, analgesics (such as Tylenol) and antidepressants-all of which might improve sleep and/or control pain. (Interestingly, anti-inflammatory pain relievers-such as aspirin or ibuprofen-are often not helpful with these disorders.) Changes in diet-particularly avoiding caffeine, sugar and alcohol-are key for some patients.
But many professionals suggest that treatment needs to be multidisciplinary-and individualized to the patient. “What’s really needed are more CFS/fibromyalgia specialty clinics,” says Powell, who runs a small one himself on University Avenue. Kaiser pioneered fibromyalgia clinics in Sacramento, too, and currently offers patients group appointments, as well as classes co-taught by rheumatologists, behavior medicine specialists, pharmacists and physical therapists. “The most critical aspect to this is educational,” says Orkand, adding that Kaiser staff emphasizes the flawed signals being sent out by patients’ central nervous systems. “The problem with a chronic pain syndrome is its tremendous impact on factors such as behavior. If you’re hurting and you’re fatigued, you worry about it. You also are relatively inactive-you don’t want to move. Even though it’s not dangerous or life-threatening, you feel quite debilitated. But if you can understand the relationship between your symptoms and behavior, you can wake up and say, ‘I know I can get up and do this.'” He even suggests some patients can eventually begin to ignore their symptoms. “I have one patient who says, ‘Oh, that’s just my fibro acting up,’ and gets on with his day,” he says.
In fact, many studies show vast improvements in fatigue patients who keep moving-especially those who engage in aerobic conditioning programs. “It was right there in that first study with the college students,” says Naguwa. “The one group of volunteers who didn’t complain of muscle pain after the interrupted sleep were long-distance runners-people in top physical condition.” Exercise-particularly swimming and walking-has also been shown to improve IBS symptoms.
Finally, even without a magic bullet, medical literature suggests that many patients get better over time-particularly if they are able to make lifestyle changes. And none of these disorders appears to shorten life spans or make people vulnerable to other, more serious disease. “It’s not crippling,” says Orkand. “It’s not life-threatening.”
Chronic Fatigue Syndrome-CFS is a fairly common disorder. The Centers for Disease Control and Prevention estimate it affects one in 50 Americans, or about 500,000 people. CFS has been defined by the National Center for Infectious Diseases as a disorder characterized by profound fatigue that does not improve with bed rest and may worsen with physical or mental activity. A clinical diagnosis is made when a patient: (1) has chronic fatigue for six months or longer and other fatigue-inducing medical conditions have been ruled out, and (2) has four or more of the following symptoms: substantial impairment of short-term memory or concentration, sore throat, tender lymph nodes, muscle pain, muscle-joint pain without swelling or redness, headaches of a new type, pattern or severity, nonrefreshing sleep, and malaise following exertion that lasts more than 24 hours.
Fibromyalgia-Fibromyalgia also is a common condition; it’s estimated that it affects one in 50 Americans too, or about 3 percent of the population. It’s characterized by fatigue and muscle pain, specifically in the neck, shoulders, back, hips, arms and legs. Other symptoms are sleep disturbances, headaches and facial pain, heightened sensitivity and irritable bowel syndrome. The American College of Rheumatology’s criteria for clinically diagnosing the disorder includes: (1) widespread aching or pain for at least three months, and (2) 11 of 18 locations on your body that are abnormally tender under mild, firm pressure.
Irritable Bowel Syndrome-IBS is extremely common-likely one in five Americans have at least mild symptoms of this disorder, and it accounts for one out of every 10 doctor visits. IBS is characterized by abdominal pain, bloating and gas, and either diarrhea, constipation, or an alternating combination of the two. To meet the Rome diagnostic criteria for IBS, you must have these symptoms for at least three months. And, as with CFS and fibromyalgia, the diagnosis is given after other diseases are ruled out.
Fibromyalgia: A Patient Speaks
“When I was diagnosed with fibromyalgia in 1999, I didn’t believe in it-I thought it was a waste-basket diagnosis,” says Renee Ferdinand, 44, who is married and lives in Sacramento. “And that’s the way a good part of the community views it.”
In Ferdinand’s case, she developed symptoms of irritable bowel syndrome in her late 30s, diagnosed after an exhausting round of tests for other bowel diseases, all of which were negative. “The main reason I went back to the doctors is I started to have a lot of pain in my neck and shoulder area,” she says. After ruling out other causes, the fibromyalgia diagnosis was made. “For about two years, it didn’t disrupt my life much,” she says. But then she began missing work at her accounting firm, and had trouble handling her workload. “It was like my brain really started to slow-and the pain got worse,” she says. After three stints of disability, during which she “tried to get well,” she joined a support group. “So many people there were experiencing the same symptoms as I was,” she says. “It forced me to become a believer.”
Ferdinand returned to work for another year, but found even the simple acts of showering and driving to the office in the morning were exhausting. “I came to the decision-a really hard decision-that I was not able to work any longer,” she says. Now she has “good days and bad days,” and her major symptoms continue to be fatigue and pain. “I wake up exhausted,” she says, explaining fibromyalgia patients rarely get Level 4, or restorative, sleep. “And the neck and back pain is always there.” She also pays for simple exertion: “If I do some gardening-you know, really exert myself on any given day-the day after that, my energy level drops right out of the bottom.”
Because of her limited energy levels, Ferdinand has gone from being an active career woman-who also enjoyed camping and hiking on the weekends-to someone who can barely negotiate basic household chores. “Yesterday, I went to the store-sometimes that can be the only thing I can do on that day,” she says. Another component to the disorder that makes going out hard seems to be a heightened sensitivity to sound, light and activity. “We’ve talked about this at the support group-and most of us avoid places like the mall,” she says. “It just seems so overwhelming to be in an environment like that.” As she describes her symptoms, Ferdinand is still amazed at how much her life has changed. “I would have never believed in this illness,” she says, “if I hadn’t gotten it.”
Though she strongly believes a better understanding of fibromyalgia is critical-especially in the medical community, which she claims is still often unwilling to accept this disorder as a true physiological problem-Ferdinand is adamant she is not a whiner or a victim. In fact, she says to manage the various components of fibromyalgia, you must be “your own advocate,” requesting treatment, keeping copies of medical tests, and recording your daily activities to find clearly identifiable triggers or trends.
In her case, for example, she believes certain foods can cause a flare-up, and so she eats whole foods, avoids additives, sugar and wheat. She also makes an attempt to limit stress. “Those with chronic pain, fatigue, have enough stress to deal with on a day-to-day basis-anything above that can send you over the top,” she says. Mild exercise, meditation and yoga seem to help many patients, Ferdinand says, as can support groups, a sympathetic therapist and keeping a sense of humor. “Laugh as much as possible,” she says. Ferdinand also says it’s important to “listen to your body,” resting when you feel tired and pacing yourself, even on good days.
Finally, Ferdinand warns this disorder can make you desperate, anxious, depressed-and vulnerable to unscrupulous healers. “Keep up with research and be willing to try new things,” she says. “But don’t buy into a magic cure-all-it doesn’t exist.”
Ferdinand is not, however, without hope. “I’m bored out of my mind,” she says, with a laugh. “If I could just return to work, a lot things would come back for me-my self-confidence, my self-esteem.”