On a blustery January morning 20 years ago, Jim Magleby drove to Sears and bought himself a leather carpenter's belt with 12 pockets, the kind of belt a guy would need who was embarking on an important home-improvement project. Then he drove home and climbed up to his attic, excited to begin work. Looking back on it now, he thinks his illness began right then, at the moment he picked up a hammer and suddenly felt too weak to use it.
For Luana Kreifeldt, the first symptom was pain. She'd stir a pot of spaghetti sauce for a few minutes and feel as if she had spent the day stirring cement. Or she'd do a little ironing and end up with tightness from her arm to her neck.Magleby was eventually diagnosed with chronic fatigue syndrome, a condition characterized by exhaustion and excruciating pain. Kreifeldt's diagnosis was fibromyalgia, a condition characterized by excruciating pain and exhaustion.
Now there is growing suspicion that the two conditions may actually be the same illness. Some researchers even suggest that Gulf War syndrome may be another name for the same thing.
The real problem might not be sore muscles and low energy levels and a host of other hard-to-measure symptoms (mental confusion, irritable bowel, depression). Instead, the common denominator may be chemical abnormalities in the brain. The real problem might not be a virus or a toxin or a trauma but a bad gene. Or several bad genes.
These are just theories, though. After more than a decade of research into chronic fatigue and fibromyalgia, experts are only inching their way toward an explanation and are miles away from a cure.
Meanwhile, as scientists explore arcane neurochemicals like N-methyl-D-aspartic acid in the hope of understanding what chronic fatigue and chronic pain are all about, sufferers like Howard Beales keep redefining what it means to have a good day.
After all these years, Beales has become fluent in the language of his pain. He can describe dull pain and deep pain and squeezing pain and a kind of pain so intense it can bring him to his knees. And then there is the pain of cotton rubbing against skin.
On bad days, Beales can't even stand to put on a shirt. On a good day he might just feel like he has the flu.
Beales' original symptom was a fatigue so overwhelming that once, during a trans-Atlantic flight, his plane caught fire and he slept through the whole thing. He has also suffered from persistent infections and from problems with memory and thinking. At 34, he can't remember the details of his children's births. Reading just a verse of scriptures can tax his ability to concentrate and comprehend.
Eventually Beales also developed the diffuse muscle and "tender point" pain associated with fibromyalgia.
Whether a patient is diagnosed with chronic fatigue syndrome or with fibromyalgia often depends on which symptoms appear first, or what kind of doctor the patient visits. A rheumatologist, for example, might say "fibromyalgia" while an internist might say "chronic fatigue syndrome." A Gulf War veteran will get still another diagnosis.
"I'm not worried what we call it," says Don L. Goldenberg, professor of medicine at Tufts University School of Medicine and author of "Chronic Illness and Uncertainty."
"The best research is that the majority of people with fibromyalgia have chronic fatigue syndrome, and vice versa." At best, both names really only describe a set of symptoms; neither name even hints at an underlying cause. And of course the same can be said of Gulf War syndrome, a name that only suggests geography and Scud missiles.
Several leading fibromyalgia researchers are taking a look at Gulf War syndrome, including Daniel Clauw, a rheumatologist at Georgetown University Medical Center. Clinically, he says, the illness has "the exact same symptoms" as fibromyalgia and chronic fatigue syndrome.
Although it originally was believed to be caused by a virus - Epstein-Barr got the majority of headlines for a while - it is now suspected that both chronic fatigue syndrome and fibromyalgia may be triggered by a number of stressors. The flu might do it. Or exposure to chemical warfare in the Persian Gulf or maybe even a new carpet in your office. Surgery can be the trigger, or emotional trauma, or an auto accident, especially, for some reason, one involving whiplash.
But why do those triggers cause debilitating illness in some people and not others?
"The people who develop fibromyalgia have been vulnerable since birth," says Robert Bennett, professor of medicine at Oregon Health Sciences University. At some point, apparently, exposure to a stressor just becomes part of the body's biologic fate - and sets in motion a series of malfunctions of the central nervous system and the immune system.
Although chronic fatigue syndrome and fibromyalgia are often dismissed as a psychiatric illness or, worse yet, a character flaw, recent research points to biologic abnormalities.
Researchers like Laurence Bradley, professor of medicine at the University of Alabama at Birmingham, and Georgetown's Clauw, are looking into abnormalities in certain neurotransmitters - the brain chemicals that help relay electrical impulses from one brain cell to the next.
What they're discovering is that Howard Beales' cotton shirts may indeed feel, to him, like sandpaper.
Pain is not just a matter of a stimulus and a response but is instead a complex chemical process. In patients with chronic pain, there appear to be several glitches at key steps.
Pain perception basically works like this: A painful stimulus (a toe striking a rock, for example) causes the brain to both release neurotransmitters that relay pain signals and to activate neurotransmitter receptors that can turn the pain signal off.
In people with chronic pain conditions there are increased levels of the chemicals that relay pain and lower levels of chemicals that filter out pain.
Patients with fibromyalgia, for example, have three times the normal levels of "substance P," a neurochemical that transmits and amplifies pain.
The problem may begin, though, with malfunctions of other neurotransmitters. Fibromyalgia sufferers, for example, also have lower levels of serotonin and norepinephrine - neurotransmitters that, when in great enough supply, work to control pain.
Patients with fibromyalgia have also been shown to have four times the normal amount of nerve growth factor, a neurochemical that stimulates the production of substance P.
In addition, chronic pain can itself cause changes in the central nervous system. In normal people, an acute pain might activate something called NMDA receptors, but after a short time these receptors would turn off. In people with chronic pain, though, the constant barrage of signals seems to activate the body's NMDA receptors and keep them turned on. These receptors then appear to branch out, activating more and more nerves.
In short, nearly everything hurts. And the pain never stops.
There is another, more controversial, theory about fibromyalgia and chronic fatigue syndrome. Its chief proponent is Harvey Moldofsky, professor of psychiatry and medicine at the University of Toronto.
The real culprit, he says, is bad sleep.
Fibromyalgia and chronic fatigue patients report sleep disturbances: both insomnia and a failure to reach levels of deep, restorative sleep.
First, Moldofsky studied the brain-wave patterns of sleeping fibromyalgia patients and discovered that they were essentially the brain waves of a person who is awake. Later he kept normal subjects awake for three consecutive nights - and discovered that they reported fibromyalgia symptoms.
That doesn't mean that bad sleep always causes fibromyalgia, says Moldofsky. But it does mean that a disregulation of the body's normal sleep/wake cycles can cause the kinds of hypersensitivity (pain, allergic responses, irritable bowel syndrome, migraines) that plague people with fibromyalgia.
It's in deep sleep, explains Moldofsky, that the body produces growth hormone, which is necessary for the repair of muscles and tissue. One study found that one-third of fibromyalgia patients had low levels of growth hormone.
Most researchers these days, says Georgetown's Clauw, no longer believe Moldofksy's theory. Bad sleep is just a symptom, says Clauw.
Meanwhile - as researchers debate, and look for grants, and tediously study tiny clues - Cecelia Morris lies on her couch.
As with most fibromyalgia patients, it took her years to get a diagnosis. Her pains started with what felt like a knife between her shoulder blades, then spread to the rest of her body. She remembers one particular low point: the day she and her children went to Fred Meyer on 3300 South and she had to shuffle up the slight incline, bent over like an old woman. She was 42 then.
Now's she 49 and she's tried most of what traditional medicine has to offer: anti-inflammatory medications, exercise and low doses of anti-depressants such as amitriptyline (which work by increasing serotonin levels and improving deep sleep). She's tried acupuncture and massage and nutritional supplements. Only water exercise and meditation have offered much relief.
Her pain can still make her sob. She's had to give up her job as an accountant. Although she once was an honor student, a girl who won spelling bees, she now keeps a dictionary handy for even the simplest words. Bright lights bother her. So do noises and crowds. The mall is a killer.
She retreats to her house, where she will often pull the blinds and hope that in the darkness and quiet she will find some relief.
And she keeps her complaints to herself. She knows how a person with chronic pain and chronic fatigue can sound like a chronic whiner. She knows that plenty of doctors still think of fibromyalgia as a "wastebasket term."
She knows that there are no simple bloods tests to prove what she has - or to prove how bad she feels.
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Additional Information
Saturday conference on pain and fatigue at U.
"Problems of Chronic Muscular Pain, Fibromyalgia and Persisting Fatigue," an all-day conference, will take place Saturday, May 17, at Orson Spencer Hall on the University of Utah campus.
The conference is presented by the University of Utah School of Medicine, the internal medicine department, the Pain Management Center and the College of Nursing, in conjunction with the Arthritis Foundation. Speakers will include Don Goldenberg, professor of medicine at Tufts University School of Medicine; N. Lee Smith, director of the U.'s Stress Medicine Clinic; Dedra Buchwald, director of the Chronic Fatigue Clinic at Harborview Medical Center in Seattle; and local physician Lucinda Bateman.
Enrollment is $35. For more information, call Continuing Medical Education at the University of Utah, 581-8664.