Victims tired of being told fatigue is in their minds

October 08, 1990|By Phyllis Brill | Phyllis Brill,Evening Sun Staff

WHEN SUZANNE Stenberg picked up the newspaper, she was shocked by the sensational headline: "Chronic Fatigue Syndrome linked to AIDS virus."

The headline summed up a recently released research study that suggests that the debilitating illness once referred to as "yuppie flu" could be caused by a retrovirus that works in a fashion similar to that of the AIDS virus.

The suggestion was not that the viruses are the same, but that they may be cousins in the same family of viruses that disrupt the body's immune system. Yet the mere mention of the deadly AIDS was enough to send a victim of the baffling CFS into a tailspin.

"My reaction was hysterical," says Stenberg, an executive travel coordinator from Bryn Mawr, Pa., who has suffered from CFS symptoms for a year.

The retrovirus theory is the latest piece of evidence that Chronic Fatigue Syndrome is a biological illness and not psychosomatic, as many patients have been led to believe. But while the findings may be scientifically encouraging, to the average sufferer of CFS they are just another piece of a puzzle that already has too many small, dissimilar parts to sort out.

Chronic Fatigue Syndrome, which is also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), consists of combination of symptoms that tend to be individualistic and to fluctuate in severity. The most common is persistent fatigue, preceded or accompanied by flu-like symptoms, including sore throat, mild fever, muscle pain and weakness and painful lymph nodes. Some victims experience memory loss or difficulty concentrating, headaches, dizziness and depression.

The symptoms can last for six months to two years or more, and some people never really seem to recover but just go into periods of apparent remission.

The illness, which has been estimated to affect more than 3 million Americans, has no known cause or cure. Its victims find themselves going from doctor to doctor in a desperate search for explanations for their lingering aches and pains.

"It's a difficult disorder to handle on your own," says Dr. Howard Hauptman, head of the division of rheumatology at the Greater Baltimore Medical Center, who has examined several patients with the syndrome, including Stenberg. "To always wake up and feel tired and not have answers to the questions of why . . . It can be wearing on you."

For a time, researchers blamed the syndrome on the Epstein-Barr virus, which causes mononucleosis, but later ruled it out as the direct cause. Research continues to focus on viruses, most recently those that weaken the body's immune system.

Yet there is still no test that confirms a person has CFS, and indeed some physicians still refuse to acknowledge the illness as any more than fallout from depression or a stressful lifestyle, says Hauptman, whose most recent lecture on the topic at GBMC was attended by 70 people.

The illness is frustrating in its elusiveness. Some victims are so debilitated by fatigue that they've had to quit their jobs. Others are merely operating at 50 or 75 percent of their normal energy level. Some have a low-grade fever, others just "always feel warm," Hauptman says. In some cases, one symptom disappears just as another comes into play.

"My doctor tells me I'm the sickest well patient he has," says Esther Rodman, of Pikesville, who has had CFS more than three years and has led a local CFS support group. "I can wake up in the morning and feel wonderful. But it can change from hour to hour, so you can't make plans."

"There are many things that mimic this illness -- from cancer to hepatitis to depression to a cold," says Hauptman, explaining that a diagnosis is basically arrived at after excluding other plausible disorders. The only way to pinpoint CFS, he says, is to obtain a complete history of the patient, make a careful %o examination and, unfortunately, subject the patient to a barrage of blood tests to rule out something that may be more serious.

"It just really gets you down," says Stenberg, 37, who has been to physicians in at least five specialties in the last year -- including internal medicine, infectious diseases, neurology, cardiology, and rheumatology -- looking for causes of her severe and chronic muscle and joint pain, swollen glands and heart palpitations.

"You get yourself into total paranoia," she says. "You look fine and you seem fine to your friends, but you're not, so you keep searching for an answer. I just hoped I could find a pill or a vitamin or something, because I knew I felt bad, even though the doctors told me that I was OK."

Rodman agrees: "When you know you're not well and your doctor says, 'I can't find anything wrong with you,' you begin to wonder yourself."

She says more than 200 people have attended the CFS support group that meets irregularly at Baltimore County General Hospital since it began in March 1988. In addition, Rodman says she has received more than 600 phone calls through the group's hot line.

"You have nothing to feel guilty about," she says she tells other people with CFS. "Unfortunately it's something without a cure. You have to accept the illness and learn to take one day at a time."

Baltimore Sun Articles
Please note the green-lined linked article text has been applied commercially without any involvement from our newsroom editors, reporters or any other editorial staff.