It's been called the "phantom disease" because it has defied the attempts of physicians the world over to treat it, much less cure it. The estimated 10 million Americans who suffer from the malady may also endure emotional stress because the people around them, including family and friends, may write them off as hypochondriacs.

The "it" is fibromyalgia, a chronic pain disorder that was first named in the late 1970s but whose history may actually stretch back to Biblical times. The National Fibromyalgia Association defines the disorder as being characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and regular sleep disturbances. Although fibromyalgia sufferers, most of whom are women, can experience chronic pain anywhere in the body, the most common sites include the neck, shoulders, pelvic area and hands. Fibromyalgia patients experience a wide range of symptoms that vary in intensity over time.

Fibromyalgia has been studied since the early 1800s. At different times, disease has been thought to be an autoimmune disorder and a muscle disorder. But better laboratory tests and brain-imaging technology have proven fibromyalgia to be a real physical disorder. Current research on fibromyalgia now classifies it as a malfunction of the central nervous system.

An Orangeburg woman, who wished to remain anonymous, said her battle with fibromyalgia proves the various levels of pain individuals with the disorder can experience. She said she had a debilitating experience in December 1998 while working at a local department store.

"I was under a great deal of stress because of my job and the fact I had just lost my mother to cancer," she said. "One day, we were moving so much merchandise around that my whole back and shoulders got almost to the point of immobilization. My doctor said I couldn't go back to retail because my back muscles were so bad. The medication she put me on was an anti-depressant because there was nothing else available, and it just wouldn't alleviate the pain.

"I went to an orthopedist, who started me into physical therapy, which put the pain into remission. I was able to cope with the pain, but later that same year, the chronic fatigue returned. The pain would still come periodically. I had another reoccurrence after I had surgery on my back muscles, but this time, I sought help immediately. I was given Lyrica for the pain, in addition to more physical therapy and psychotherapy.

"I'm still not completely pain-free, but I've come a long way. I tell people who experience the same kind of pain I have not to fool themselves into thinking that it's normal due to aging. Don't let it go -- get yourself examined and diagnosed."

The current standard for determining a positive diagnosis for fibromyalgia is an exam based on the standardized American College of Rheumatology criteria, which says the patient must exhibit widespread pain in all four quadrants of the body for at least three months and tenderness of pain in at least 11 of the 18 specified tender points, which include the base of the neck, shoulders, arms near the elbows, hips, etc., when pressure is applied.

Potential treatments for fibromyalgia are currently being studied at the Medical University of South Carolina in Charleston, one of a number of universities across the country that are engaging in research on the disorder.

Dr. Baron Short, an assistant professor in the Department of Psychiatry & Behavioral Sciences, has been heading up research on transcranial magnetic stimulation, funded in part by the National Institute of Arthritis.

"This is an investigational study," Baron said. "TMS uses magnetic energy through the skull to stimulate the brain. With fibromyalgia, there is mounting literature that patients with the disease are experiencing an abnormal processing of pain signals, causing them to perceive more pain in certain regions of the brain. With TMS, we stimulate those areas that affect pain perception and emotional regulation. TMS has previously been well studied in depression, and we are now applying it to fibromyalgia.

"For the last year, we have been using TMS on our study subjects for periods of 20 minutes a day for two weeks and then measuring the pain perception over time. Right now, we're trying to determine the right length and strength of magnetic signal booster sessions that will hopefully result in the optimal treatment procedure. The Food and Drug Administration also approved Cymbalta and Lyrica to decrease the amount of pain perception in fibromyalgia patients."

Another fibromyalgia treatment, the Guaifenesin Protocol, was developed almost a decade ago by the University of California, Los Angeles' Dr. R. Paul St. Amand, an endocrinologist who specializes in the disorder. Amand's Web site, www.fibromyalgiatreatment.com, says the protocol uses guaifenesin, an expectorant, that is found in non-prescription form in Mucinex and other similar over-the-counter medications because it has no side effects and is safe for children. Guaifenesin clears phlegm from the airways.

Amand's protocol also uses a diagnostic tool known as fibromyalgia mapping, a process by which the doctor uses the fingers to detect swollen places within muscles, tendons and ligaments, known as fibromyalgia lesions. Their location, size and degree of hardness become a baseline for future comparisons.

Gretchen Parker of Lexington, who oversees the Lexington-Columbia Fibromyalgia Recovery Group, has followed Amand's Guaifenesin Protocol almost since its development.

"I was near death 10 years ago," Parker said. "My local physicians had no clue of what to do, much less what was wrong. It seems, due to a fairly common complication of fibromyalgia called reactive hypoglycemia, my weight had dropped below 98 pounds and was still sinking."

Parker said prior to meeting Amand online, she was housebound because of her illness. Nine months after starting his Guaifenesin treatment, she said she went back to work as a pediatric occupational therapist.

"Now, I attend Pilates classes, love to canoe and walk more than two miles almost every day for exercise. Most 61-year-old women would have trouble keeping up with me," Parker said.

Donna Smoak said she has suffered with fibromyalgia for much of her life and began the Guaifenesin Protocol recently, with Parker's guidance. The Orangeburg woman said the disorder had forced her to quit teaching and enjoying an active role in the Orangeburg Part-Time Players, but the changes she has seen since have been dramatic.

"I began experiencing pain in the fourth grade in the groin area," the 52-year-old said. "At that time, I was told I had arthritis. The pain eventually took over every phase of my life. One of the low points was last year, when my husband had to take me to class in a wheelchair. "Even though I've only been following Dr. Amand's treatment protocol for a month ... I'm understanding it so much more by living it and following it," she said. "My hair is growing, and I've lost 12 inches around the waist."

Smoak, who said she hopes to start a fibromyalgia treatment and support group in Orangeburg, said the treatment has also led to big emotional changes.

"Before, I had to search for reasons to live most days because of the pain, and I didn't feel like I had much hope," Smoak said. "But I don't have to search now because I'm living life. Plus, I don't think totally about myself now because I'm more focused on other people. I can enjoy time with my family and friends. I still have some physical problems, like my back, but living the new protocol is becoming more and more second nature. This also means learning new behaviors, like recognizing when to relax and not push so hard.

"This has made such a difference in my life, I just want to spread the word."

For more information on fibromyalgia, visit the National Fibromyalgia Association's Web site at www.fmaware.org.

T&D Staff Writer Phil Sarata can be reached by e-mail at psarata@timesanddemocrat.com or by telephone at 803-533-5540. Discuss this and other stories online at TheTandD.com.

Fibromyalgia

For many people who suffer from chronic pain, the question is whether an individual can tell if they have fibromyalgia by pinpointing set pain patterns. Unlike most disorders, fibromyalgia has no set symptoms, and many combinations are interwoven.

Those who have one or more of the following symptoms should consider consulting with a rheumatologist who specializes in fibromyalgia to be properly diagnosed. The general symptoms of fibromyalgia include:

Pain

The pain of fibromyalgia is profound, widespread and chronic. It knows no boundaries, migrating to all parts of the body and varying in intensity. Fibromyalgia pain has been described as stabbing and shooting pain and deep muscular aching, throbbing and twitching. Neurological complaints such as numbness, tingling and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning. Aggravating factors that affect pain include cold or humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress.

Fatigue

The fatigue of fibromyalgia is much more than being tired. It is an all-encompassing exhaustion that interferes with even the simplest daily activities. It feels like every drop of energy has been drained from the body, which, at times, can leave the patient with a limited ability to function both mentally and physically.

Sleep problems

Many fibromyalgia patients have an associated sleep disorder that prevents them from getting deep, restful, restorative sleep. Medical researchers have documented specific and distinctive abnormalities in the Stage 4 deep sleep of fibromyalgia patients. During sleep, individuals with fibromyalgia are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep.

Other symptoms

Additional symptoms may include: irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms and impaired coordination.

Information from the National Fibromyalgia Association, www.fmaware.org.

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