Christine Ortmann, RN, remembers bemoaning that she was sick with a fever 12 years ago on one of her rare four-day weekends. The budding nurse had no idea she would never fully recover.

Ortmann, then 26, continued to run a low-grade temperature and noticed that her heart was beating fast. One doctor gave her medication for chronic bronchitis, but her symptoms persisted. She had her thyroid checked, but tests showed it was normal.

Ortmann, who lives in Elgin, Ill., told her cardiologist that she was exhausted every night, but couldn’t sleep.

Even after a day of extreme fatigue, her mind wouldn’t shut off at bedtime. When her doctor suggested she might have chronic fatigue syndrome (CFS), Ortmann accused him of making up the name.

She is one of 1,088 out of every 100,000 nurses who suffer from CFS, according to a study published in 1998 by Leonard Jason, Ph.D., a professor of clinical psychology at DePaul University in Chicago.

People with the disorder often have trouble sleeping and experience severe fatigue following exertion. They also may have tender lymph nodes, frequent fevers and muscle pain.

Although the symptoms can be debilitating, there’s no clinical test that patients can take to prove they have the disorder. Doctors are not sure what causes it, and there is no known cure.

Nurses who experience the same symptoms as Ortmann say that the ambiguity surrounding the syndrome only exacerbates their struggle with the sickness.

Family members and co-workers may pass it off as laziness, and grow frustrated when the symptoms lag on for years.

Ortmann admitted she was thrilled when doctors suspected she might have lymphoma in the neck. At least she would understand why she was sick. But they found no cancer.

Quality of life
"I said, ‘You can’t tell me I have chronic fatigue syndrome, send me home and not know what to do,’ " Ortmann remembers when she was first diagnosed. "At least people are more sympathetic with cancer because you get sick and die or get better. With CFS, you don’t get better. You just have some good days and some bad days."

Jill Anderson, Ph.D., RN, a clinical assistant professor at the University of Illinois in Chicago, studied the quality of life for this often-dismissed disorder.

She asked 110 individuals to rate their satisfaction in 34 aspects of life and compared these results to data from people in other illness groups who had taken the same test.

Patients with CFS scored lower satisfaction ratings than people in all other disease groups. People with CFS averaged a score of 12.6, compared to 18.6 with HIV patients, 19.1 for people with narcolepsy and 22 for those with cancer (post-chemotherapy).

"With cancer, you get legitimized. At least no one questions that you have it," Anderson said. "People question if CFS really exists."

She said nurses have a particularly difficult time when they have CFS.

They are productive workaholics and feel bad when they can’t handle a job because of fatigue, she said.

Duane Carlson, MD, a gastroenterologist at Valley Medical Center in Renton, Wash., said that the mystery surrounding the disorder also is difficult for physicians.

"I believe in my heart of hearts that there is an organic basis for it, but doctors can’t help but wonder if it’s a real entity when there’s no test for it and no reliable therapy," he said.

Although much is unknown about CFS, researchers have made some discoveries in recent years.

They’ve found that many people with the disorder begin to experience the symptoms after catching a viral infection.

David Bell, MD, who specializes in CFS at Medina Memorial Hospital in New York, said the body fights the infection and then somehow the immune system never turns off.

The overactive immune system may release chemicals that cause the fatigue and other symptoms.

The disorder is twice as common in women as men, and victims are usually between ages 25 and 45, according to Harrison’s Principles of Internal Medicine.

The Chronic Fatigue and Immune Dysfunction Association of America estimates that 800,000 people nationwide have the disorder.

At greater risk
Nurses seem to be at greater risk of developing CFS, Jason said.

He found that the prevalence rate was twice as high among nurses compared to the general population.

Nurses may be more susceptible because their jobs can involve shift work that disrupts the body’s sleep patterns, Jason said.

Working in the hospital environment also exposes nurses to more infections.

Ortmann stopped working for six months to recover from the disorder. When she didn’t improve, she decided to return to work despite her constant fatigue. She cut her hours to two night shifts a week, but she was sometimes so exhausted that she would fall asleep standing up.

She said fellow nurses were supportive in spite of her limitations, but then she also began to suffer from fibromyalgia—a disorder often associated with CFS.

Fibromyalgia patients feel pain in the joints and muscles, and may experience an array of other symptoms, including cognitive confusion, irritable bowel syndrome, fatigue, chemical sensitivities, dry eyes, low-grade fever and influenzalike symptoms. Ortmann continued to work for 18 months before she resigned.

Fibromyalgia is four to five times more common in women than in men and most prevalent in women aged 50 and older, according to Harrison’s Principles of Internal Medicine.

It is more common than CFS, with 6 million to 12 million sufferers in the United States.

Although there is no formal diagnostic test for fibromyalgia, in 1990 the American College of Rheumatology created a list of criteria for diagnosing the disorder.

The guidelines state that patients must experience a history of widespread pain in five specified parts of the body, and also feel pain in at least 11 of 18 tender points.

Cause of pain
Carol Landis, DNSc, RN, an associate professor in the department of biobehavioral nursing and health systems at the University of Washington, is zeroing in on at least one potential cause of pain in fibromyalgia patients.

She recently studied night hormone patterns in middle-aged women with fibromyalgia.

Landis discovered that those women with the disorder had lower levels of growth hormone in their systems at night than did those women who did not have fibromyalgia.

Growth hormone improves muscle function and strength, which may explain why people with fibromyalgia feel achy.

Landis said that because she is one of many researchers studying CFS and fibromyalgia, it is a sign that the disorders are more accepted than in past years.

"This shows that women are being taken more seriously and that’s the most positive thing that can happen," Landis said. "The fact that there’s more research means there’s hope of understanding these conditions."

Other research suggests that fibromyalgia patients also have low levels of serotonin, one of the body’s natural painkillers. This may explain why many patients feel less pain when they take antidepressants that enable the body to maintain higher levels of serotonin.

Jaynie St. Pierre, RN, has found another way to treat her discomfort from fibromyalgia.

St. Pierre, who lives in Monroe, La., said it is crucial to stay active to keep the pain at bay.

St. Pierre decided to go to nursing school in her late 30s in order to get out of the house and educate others about the disorder.

Some of the people she educated were fellow nurses.

When she first started working, St. Pierre said some nurses seemed frustrated when she didn’t want to push a stretcher because of the pain.

But once they understood that she would do a better job if she avoided certain tasks, the nurses were helpful, St. Pierre expained.

As the leader of fibromyalgia self-help groups, St. Pierre preaches to others the secrets she’s learned.

"You have to get your mind busy doing something," she said. "You don’t want to stop because when you sit down, you’ll feel the pain."