End Fatigue

Life In Pain: Chronic Fatigue is Still a Mystery

By: Cathey Bost SPECIAL TO THE JOURNAL

Date: Tuesday, September 3, 2002

Cheryl Mahan of East Bend will never forget Oct. 25, 1985. It was the day her world changed.

Mahan was 28 years old and, by her own account, healthy and energetic. While adjusting to life as a single woman recently divorced, she worked two jobs, one as a receiving clerk for a large grocery store and the other loading trucks for UPS.

On that fall afternoon, she went horseback riding with friends. She had grown up riding and over the years had learned to bounce back from falls from the saddle.

But this day would end differently. Mahan took a hard fall from her horse. Landing on her back, she was knocked unconscious for a few moments. Determined to keep up with her friends, she got up, dusted herself off and got back on the horse.

She couldn't say just what was wrong, but she knew that she didn't feel right.

On her way home, she experienced shooting pains in her neck, shoulders and upper back, so she bought a heating pad. She took it with her to bed, expecting that a good night's sleep would set her right.

Instead she woke up the next day and she felt as if she had been kicked by that horse.

"The pain and stiffness were so great that I was trembling," Mahan said. "I forced myself to go to work and found that my arms and fingers were growing numb. One arm felt as if it was going to sleep. The pain when I bent my head down to look at my desk was excruciating."

For the next six months, she said that she was in increasingly severe pain. "I had searing pain in the back of my head, neck and shoulders," Mahan said. "And over the months and years, the pain continued to worsen, spreading all over my body.

"It was like every nerve in my body was on fire: a maddening, burning sensation to the point where I couldn't stand to be touched.

"It felt like somebody had a hatchet buried in the middle of my back."

Mahan is now 43 and no longer works because of her pain and other symptoms that include profound fatigue, flu-like aching, numbness and tingling in her arms and fingers, and mental confusion known as "brain fog."

She has consulted several doctors over the years, including specialists in orthopedics and neurology, as well as osteopaths.

One doctor said that she probably had a severe cervical sprain as a result of the fall; even so, he pointed out, the X-rays he ordered looked fine. He reassured her that she did not have a life- threatening disease.

Still, the pain continued, and her search for a doctor who would take that pain away grew more urgent - she was missing weeks of work at a time, her life disrupted.

She collected an impressive number of prescriptions for muscle relaxants, anti-anxiety agents, antidepressants, non-steroidal anti- inflammatory drugs (NSAIDs), analgesics, drugs for asthma, allergy medications and pancreatic enzymes.

At one time she was taking 13 different medications.

"I was so tanked up I couldn't even think," she said. "It became a process of taking one medication to treat the side effects of the others."

Her symptoms also included difficulty in falling asleep and weight gain. After hearing her recurring complaints and conducting fruitless exams, one doctor made a remark that reduced her to tears.

"He told me that basically what was wrong with me was 'middle- aged, fat-woman' syndrome," she said.

Finally, in 1991, a doctor told Mahan that she had fibromyalgia, also called fibromyalgia syndrome (FMS), a mysterious and controversial set of signs and symptoms that is only now is getting the kind of attention from the scientific community that patients have demanded for more than 20 years.

FMS is associated with Chronic Fatigue Syndrome, also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), and with Myofascial Pain Syndrome (MPS).

Myofascial pain refers to pain that stems from the muscle fiber and the connective tissue.

Mahan is among the 6 million to 12 million Americans with FMS. The estimated number of people with FMS varies widely according to source: The complaints are so general, and bring to mind so many other medical disorders, that numerous people receive diagnoses such as arthritis before they are eventually found to have FMS.

In fibromyalgia (previously known as fibrositis), patients have many tender knots in the muscles. These tender knots are a major cause of the aching that FMS patients feel.

In the mainstream medical establishment there has been sympathy from some doctors, and skepticism and outright denial from others.

Mahan went six years before getting her diagnosis, and her frustrating story is not unusual. Other people with FMS who live in the Winston-Salem area have traveled to the Mayo Clinic, which has locations in Minnesota, Arizona and Florida, just to be told that they had no disease known to man.

Improvements in medical technology and an increasing body of research have given Mahan and others like her hope that the factors leading to FMS/CFS will be revealed, and that therapy can be appropriately targeted.

Increasingly, doctors and researchers are taking the syndromes seriously.

"Everybody has a pet theory about what's going on with these syndromes," said Dr. Sean Malone, an assistant professor of neurology in the rehabilitation program of Wake Forest University Health Services.

"It's unfortunate that there's not more science behind it, but there are people working quietly in the background. The National Institutes of Health (NIH) is beginning to support basic science research."

Meanwhile, Malone said that FMS, CFS and MPS are "true entities."

"I don't think they're psychiatric illnesses," he said.

Doctors with sophisticated specialties - virologists, allergist- immunologists and neuroendocrinologists - have entered the research field, hoping to pinpoint the triggers that lead to these pain and fatigue syndromes.

Among these researchers is Dr. Jacob Teitelbaum, the director of the Annapolis Research Center for Effective FMS/CFS Therapies. He spoke to the Winston-Salem Chronic Fatigue Syndrome, Fibromyalgia and Myofascial Pain Syndrome Support Group (Mahan is one of its 300- plus members) at its August meeting. More than 175 people attended.

Teitelbaum is the author of a book, From Fatigued to Fantastic! (Avery, 2001). In the book and at his Web site, www.end fatigue.com, he uses simple, basic language to chronicle research findings to date, including his own findings.

Although the pathophysiology of these pain-and-muscle syndromes is not well known, he said that there appear to be many triggers, or factors, that initiate the syndromes.

These factors include injuries, psychological stresses, physical stresses, medical illnesses and environmental toxins.

A key component of FMS/CFS is sleep, or lack of it.

"When we sleep, we usually have periods during which we stop moving and go into deep, very restful slumber," Teitelbaum said. "Unfortunately, the little muscle knots of fibromyalgia make it uncomfortable to lie in one position for an extended time, causing a return to light sleep.

"Because of this, people with fibromyalgia do not stay in the deep stages of sleep that recharge their batteries and during which the body produces growth hormone.

"Although a fibromyalgia patient may sleep for 12 hours every night, he or she may not have slept effectively for years."

In the 1980s, the researchers who took FMS/CFS seriously thought it was brought on by the Epstein-Barr virus.

Now clinicians have added many more possibilities for consideration, Malone said.

"The new frontier, and it's very controversial, has to do with the immune system and our response to many organisms in our environment, particularly viruses that everyone is exposed to," he said.

"These include herpes viruses, the chickenpox virus, cytomegalovirus (CMV) and others. They live dormant in our bodies and they sometimes break out. It may be that our bodies respond to these viruses in a way that our immune system is turned on, and we produce secondary chemicals that affect the central nervous system.

"These secondary chemicals seem to disable, but not destroy, as in the case of auto-immune diseases. It's probably many different viruses involved, and then the secondary immune response attacks the nervous system, causing the many and varied symptoms of FMS and CFS."

Automobile accidents and falls like Mahan's appear to be a common trigger in FMS, even when no serious injury seems to have resulted from the accident.

Another apparent trigger is giving birth.

"The problem is it's a very complex disease," Teitelbaum said. "But we have more pieces of the puzzle than ever before.

"We are starting to understand the common denominators more and more."

Mahan maintains an optimistic outlook most of the time, despite a daily life that sounds grim.

"I wake up every morning and I can't move," she said. "Basically I'm paralyzed. It takes from 45 minutes to two or three hours before I get going. A lot depends on the weather and what position I slept in. I get muscle spasms so severe I've had to get shots of muscle relaxants for the pain.

"Sometimes I can do some light activity for two or three hours, such as watering the flower garden or going to the grocery store. Other days I don't do a thing but get up to go to the bathroom and eat cold cuts straight from the refrigerator. It's very unpredictable."

She has found some relief by taking various vitamins and minerals. For reasons she doesn't completely understand, magnesium supplements have proven very helpful.

"(Magnesium) soothed my nervous system, and helped my stomach," she said. "It's one of the big keys that helped me."

The major turning point in her illness came this past March, when she raided her retirement account and went to Charlotte to see Dr. Charles Lapp, the director of the Hunter-Hopkins Center, which is dedicated to the treatment of those with FMS/CFS.

Patients who visit the Hunter-Hopkins Center, where research is under way as well as treatment, are expected to pay cash up front. (Fees at such clinics are said by members of the local support group to range from about $150 an hour to $600 an hour.)

Lapp prescribed antibiotics (apparently Mahan had contracted Lyme disease some years earlier), Vicodin for her pain and Ativan to help her sleep.

"These (drugs) have been more beneficial than any of the other stuff I was on," Mahan said.

Meanwhile, she doesn't blame the mainstream medical establishment for minimizing the significance of her illness.

"I don't blame doctors," she said. "They're trained to look for empirical evidence. If they can't find it, they don't believe it's there.

"But I know what pain is, and I promise you, this is real."