Chronic fatigue and fibromyalgia are diseases of exclusion, Dr. Charles Lapp, M.D., told a Roanoke audience. Diagnosing them means first ruling out any other reason for the symptoms.
In 1984, 65 members of the Raleigh (N.C.) Symphony had a flu-like illness. The majority recovered, but six were left with the debilitating symptoms of chronic fatigue and fibromyalgia syndrome.
Why didn’t all get chronic fatigue or fibromyalgia?
No one knows, although there’s evidence that some people are just susceptible to the illnesses, Dr. Charles Lapp of Charlotte, N.C., told an audience Saturday at Carilion Roanoke Memorial Hospital. Lapp treated the Raleigh musicians.
Research shows that the illnesses can run in families, he said.
Although chronic fatigue syndrome and fibromyalgia are considered separate by many doctors, Lapp said they are manifestations of the same problem. Chronic fatigue and immune dysfunction syndrome, or CFIDS, relates to the loss of memory and ability to think and to severe fatigue symptoms; fibromyalgia syndrome, or FMS, defines the condition when it involves muscle pain but not the cognitive problems, he said.
Some patients have told Lapp that sometimes while driving they can’t remember whether a red light means stop or go or they forget how to drive, he said. He’s also had patients whose skin even hurts.
No one knows why people get the diseases, and no one knows how to cure them, Lapp said.
Most of the nearly 200 people gathered at Roanoke Memorial to hear Lapp suffered from chronic fatigue syndrome and fibromyalgia or were relatives of sufferers. The lecture was sponsored by the Roanoke area Chronic Fatigue & Immune Dysfunction and Fibromyalgia Support Group and sold out almost immediately after it was announced several weeks ago.
The support group brought Lapp to the Roanoke Valley because so many patients felt medical professionals in the area needed to know more about the illnesses, said Cinda Crawford, support group leader. Lapp is Crawford’s doctor.
Lapp is medical director of Hunter-Hopkins Center in Charlotte, which is nationally known for treatment of the illnesses. He has researched the diseases for more than a decade and is among doctors testing new drug treatments for them.
Diagnosis a problem
It is difficult to diagnose CFIDS and FMS, he said. There are no specific physical manifestations and no specific lab tests for them, and the symptoms overlap with those of many other diseases.
For example, the symptoms sound like Mediterranean flu, multiple sclerosis, mononucleosis, sick-building syndrome or a persistent viral infection, he said. Symptoms also can be almost undetectable, or as conspicuous as large swollen glands in the neck.
“Doctors don’t recognize the illnesses,” Lapp said.
About 1 million cases have been identified, but it’s suspected that there are as many as 4 million cases, he said. By comparison, the United States has 477,000 AIDS cases, he said.
Lapp said the illnesses are identified in 2,000-year-old writings. Fibromyalgia was even given a name — fibrositis — as long ago as 1894. For many years, however, the illnesses’s source has often been considered mental rather than physical.
They’re real, though, Lapp said. Brain scans of people with CFIDS show diminished blood flow to areas that control thinking and sleep, he said. Other research shows that CFIDS sufferers have what’s called “awake sleep.”
The research subjects were awake and repeating numbers backward and forward, but they had the brain waves they should have when asleep, he said. When they slept, they had the “alpha brain wave intrusion that wakes people up,” Lapp said.
In 1994, the Centers for Disease Control in Atlanta ruled that a diagnosis for CFIDS would be reasonable if a patient has had six months of debilitating fatigue and all other plausible conditions that could cause the symptoms have been ruled out, Lapp said.
The centers ruled that fibromyalgia could be the diagnosis for someone who has had undefined muscle pain for at least three months and who has tenderness in at least 11 of 18 classical tender “points” or areas in the body, he said. Included are areas in the neck, back, knees and near the elbow.
Research indicates that about 72 percent of cases with CFIDS symptoms are caused by infection and maybe 1.7 percent by stress, he said. Other causes are physical trauma, including childbirth, and even allergies. About 50 percent of the cases with fibromyalgia symptoms occur after accidents, Lapp said.
The mean age of sufferers is 37, which means half of the sufferers are younger and half are older. Women are more likely the victims, but women also are more prone to other diseases involving the immune system, such as rheumatoid arthritis, Lapp said.
A typical patient would be a young female executive who is trying to be successful in many areas, he said.
“Charlotte is a banking town, so I talk to them about ‘energy dollars,'” Lapp said. “They have only so many energy dollars, and they have to decide where to spend them. If they spend them all at their job, they have none left to spend on themselves or their families.”
Chronic fatigue or fibromyalgia sufferers have to set priorities and gauge their energy capabilities, he said.
A variety of treatments
Oddly, complete bed rest is not a treatment for chronic fatigue and fibromyalgia.
“If they rest, they rust,” Lapp said.
Patients are encouraged to keep moving, but at a manageable pace, Lapp said.
The Hunter-Hopkins Center has a treatment structure that begins with education and goes all the way, in severe cases, to strong and even experimental drugs, he said.
“Our philosophy is that patients are too sick to know what treatment is best,” Lapp said. “We’ve tried to look at the research and pick the best treatments and guide the patients.”
Initially, patients are educated about the illness, he said. Next, they learn that activity must be balanced with rest. Along the way, they’re counseled in proper posture and proper breathing.
Often muscles in the neck and shoulders tighten, shoulders slump forward, the chin gets pushed out and the head is no longer balanced, Lapp said. That makes the person even more tired or sore, he said.
To test whether they’re breathing properly, they’re asked to put one hand on their chests and one on the belly button and take a deep breath. If the hand on the chest moves first, the person isn’t breathing properly by using the diaphragm, Lapp said.
“The belly hand should move first,” he said.
Breathing through the chest pushes the lungs up toward the neck and tightens muscles in that area, he said.
Patients are encouraged to do regular stretching, and to try yoga and tai chi or physical therapy, massage and even acupuncture. Hydrotherapy is a highly recommended treatment, Lapp said.
If a sufferer can find a pond or a pool with water about 84 degrees and float vertically in it 15 minutes three times week, it can improve the condition, he said.
Acupuncture also can be effective, Lapp said. But a person should try to find someone well trained and then get six sessions. If it helps, continue; it not, quit, Lapp said.
Patients also are told to eat lots of fresh fruits and vegetables, rice, pasta and potatoes and light meats and avoid tobacco, sugar, alcohol, coffee and Nutrasweet. Multivitamins, such as Theragram M and Centrum Silver, are part of the treatment plan as are vitamins E, B12 and magnesium malate, he said.
A simple but common treatment is salt, Lapp said. Patients who don’t have high blood pressure, can get relief from sweats and heart palpitations from extra salt, he said. He will have a patient drink eight glasses of water a day and take two teaspoons of salt, he said. A person shouldn’t do the treatment, though, without a doctor’s supervision.
Since chronic fatigue and fibromyalgia sufferers usually have sleep problems, Lapp said he sometimes recommends over-the-counter treatments such as valerian root, kava or melatonin or one of the “P.M.” products such as Tylenol P.M.
If needed, Lapp said, treatment also involves prescription drugs that help a person sleep or that control pain.
Since 1989, Lapp has been a researcher in the clinical trials for the drug Ampligen. The drug is in the final test phase before being eligible for approval by the Food and Drug Administration, he said.
Ampligen was first made as an anti-viral drug for use in animals. In that form, it was toxic to humans, he said. Now altered to eliminate the toxic part, it’s being used on humans with good results and no severe side effects, he said.
In 150 patients studied, 80 percent improved somewhat and 50 percent were able to return to work, he said. Ten centers administer the drug, with Hunter-Hopkins among them.
Total recovery elusive
Despite all the attention the illnesses are getting and the many treatments offered, there is no cure, Lapp emphasized.
Complete recovery from fibromyalgia is rare, he said.
Lapp said he doesn’t recall a patient in which the tender points totally disappeared. Recovery is more promising with the flu-like symptoms of chronic fatigue, he said.
Seventy-five percent of the people who do recover do so within six years, he said. Yet, Lapp said, he’s had two patients recover after 11 years and two others who became symptom-free after 22 years.