Ask some physicians to explain fibromyalgia, and they will tell you it is a condition that exists in the minds of hysterical females; others will claim it is an unidentified health problem that requires additional sleep and an occasional pain reliever. A growing number of medical professionals, however, will tell you what the American College of Rheumatology (ACR) determined in 1990. They would confirm it is an actual medical syndrome that affects all four body quadrants, causes widespread pain for at least three months, and involves at least 11 “tender points” among 18 sites on the body. The sites are overly sensitive to stimuli that typically would not cause pain.

Fibromyalgia is a real condition creating real problems for people of all ages and ethnic backgrounds and can be experienced concurrently with hepatitis B and C. Viral infections often appear in the medical backgrounds of those suffering from fibromyalgia. It is not known how the occurrence of a viral disease, such as hepatitis, is specifically linked to the condition. Studies have explored various potential triggers of the syndrome, including trauma, stress and hepatitis infections. For example, research findings published in a 2005 study suggested having chronic hepatitis B appeared to increase the risk of FM and its associated symptoms.

According to the ACR, the American Medical Association, the National Institutes of Health, the Food and Drug Administration (FDA), and the American Pain Society, this condition is real. So why does it take an average of five years for a patient to get an accurate diagnosis? Unfortunately, as powerful as fibromyalgia can be, it is just as elusive. It does not show up on a blood test or X-ray. It doesn’t have a defining hallmark of symptoms but has generalized ones that can fit the parameters of other conditions.

“Fibromyalgia has no specific physical abnormalities to see, just elevated tenderness,” explains Dr. Philip Mease, director of Rheumatology Research at the Swedish Medical Center in Seattle, Washington.

Dr. Jacob Teitelbaum, medical director of Fibromyalgia and Fatigue Centers and author of “From Fatigued to Fantastic,” adds that there is no fancy test for the condition. “Doctors will say it doesn’t exist,” he notes. “If your physician tells you this, just say ‘goodbye,’ and walk out the door. You don’t want a doctor you have to educate.” 

Head to Toe

The name fibromyalgia means pain in the muscle fibers. From mild annoyances to completely debilitating, the pain element only paints a limited picture of this pervasive condition. There are numerous other common complaints associated with fibro. (See Common Complaints.)

A thorough medical history is the best way to discover most of these issues, although some doctors will order thyroid panels and complete blood counts to look for abnormal numbers. Dr. Eric Braverman, director of the Place for Achieving Total Health, has been working with fibro patients for more than 20 years.

“Technology has come a long way, so we have more effective ways of finding and treating fibro,” he says. “There have been more cases of fibromyalgia in recent years because of lack of health care in the U.S. Many people are finding they can’t visit their doctors as often so it goes untreated.”

Any combination of these symptoms can play havoc with a person’s life, not only physically, but also emotionally, socially and mentally. As Teitelbaum describes it, “Imagine you’re a busy mother of several children and suddenly you experience brain fog, so people see you as dumb. You gain the typical 32.5 pounds, your libido drops the typical 73 percent, you have no energy and you feel like you have a toothache throughout your entire body. Your medical tests come back normal—so now your friends, family and doctors think you’re crazy.”

Braverman agrees. “Physically, the pain can be excruciating and force a person to the confinement of their beds. Mentally, fibro has been proven to cause depression due to the pain and anguish that people experience. Socially, it definitely has an effect. Many people find that they cannot go out as much as before, to run errands, go to dinner, or attend social gatherings. It is an all-encompassing disease.”  

Searching for an Answer

Scott, a former education student and now author of a children’s book called “Johnny the Phoenix” knows this feeling. He was diagnosed with the condition in 2006, after searching for an answer for two years. Constant headaches had resulted in four sinus surgeries and a battery of neurological tests. Nothing helped. Then a friend handed him a book about fibromyalgia. After a sleep study that showed apnea, he went to a new doctor and was diagnosed immediately.

A husband and father, Scott’s days often depend on the weather. “I find that barometric pressure has a large impact, as well as extreme heat and cold,” he says. “I get as much sleep as possible, usually over nine hours. I look ahead to what needs to be done, and I try to use no more than 90 percent of the energy that I have available. It is a very frustrating disease, because there is no way to plan for good or bad days.”

Today, Scott is on disability because it is impossible for him to work. “If you find that you have severe fibro as I do, fight for your disability,” he advises. “Sit down and take stock of what you have left. For me, it is my ability to tell stories, so I write. Just because you have fibromyalgia doesn’t mean that your life has ended. It simply means you need to go to your back-up abilities.”

To Make Matters Worse

Just as the condition does not have a definitive test, it does not have a distinct cause or treatment either. Over 150 clinical trials are being conducted at any one time trying to determine the answers. So far, researchers have proposed that fibromyalgia may be an abnormality in brain chemicals. An imbalance in neurotransmitters, such as norepinephrine, serotonin and dopamine, directly affects how pain is experienced and how it is blocked.

“A person with fibro is like a house with a thermostat that is off kilter,” explains Mease. “There is an alteration in sensory processing in the individual. There is an excess of sensory input and a deficiency in the body’s ability to inhibit or block it. Too much comes in and not enough protects it.”  

Teitelbaum compares it to an energy crisis. “With fibro, the body blows a fuse,” he explains. “And that fuse is the hypothalamus.” Other theories are that fibro is a genetic condition (it tends to run in families) or that it comes along as a “fellow traveler” as Mease calls it, with other infectious or autoimmune diseases, such as hepatitis.

Regardless of the cause, what many patients want most, once they have their diagnosis, is help. Unfortunately, treatment is as complex an issue as the condition itself. Patients may take a variety of medications designed to battle specific symptoms, including pills to combat pain, diarrhea, and depression. They may need pills to increase energy or sleep at night. Prescription costs easily run into the hundreds or even thousands of dollars.

The FDA has approved several drugs for the condition including milnacipran (Savella®), duloxetine (Cymbalta®) and pregabalin (Lyrica®). As with most medications, however, there are side effects to consider. Other possible treatments include massage, acupuncture, chiropractic care and heat applications. Some fibro patients also have had trigger point (spots that are tender to palpation) injections in which an anesthetic is injected into the muscle, which is then gently stretched. The problem with this method is that the injections are usually quite painful, and it can take days for the patient to feel relief.

Teitelbaum recommends treatment through what he calls the SHINE Protocol. “Ninety-one percent of fibro patients show improvement after following these steps,” he says.

In the protocol, “S” stands for sleep. “It’s essential that the body gets at least eight hours of sleep, even if it means helping it by using herbs, medication or other techniques,” explains Teitelbaum.

“H” stands for hormonal support, as in taking supplements to support the thyroid and adrenal glands. “I” stands for infection because fibro patients often deal with a variety of infections. “N” stands for nutritional support, indicating the importance of a healthy diet, and “E” stands for exercising as able. While exercise typically helps, it is hard to do when dealing with intense exhaustion and muscles that are already complaining.

Cutting off Sleeves

Lee’s life hasn’t been easy for some time. After a full life as an educator and syndicated newspaper columnist, he began to experience health problems. In 1990, he was diagnosed with multiple sclerosis. Later, he developed several types of arthritis. Everything got worse in 1995 when a speeding semi-truck loaded with a payload of stone broadsided him, burying him under 75 tons of rubble.

 “The police thought I was dead,” he admits. He almost was. It took six hours to extricate him. He spent a month in intensive care and six months in the hospital. When he appeared in the courtroom, he was still in a wheelchair and hooked up to an IV. “I was so out of it, I had no idea what was even going on. I got absolutely nothing.”

It wasn’t until 2004 that Lee was diagnosed with fibro. Amazingly, after all his health problems, it is fibro that has had the most profound effect on his life. “This pain supersedes everything else,” he states. “There are spots on my arms that hurt so much I have had to cut off all the sleeves on my shirts. I can’t stand the touch of the fabric.”

Not much makes Lee feel better. He uses a massage pad in his chair but says he has to put several towels or blankets between the rollers and his skin or he can’t stand the pressure. Each month Lee’s medications cost $3,000. After being unemployed for more than 14 years, this is money he simply does not have so he stopped taking most of the medication.

“Each night I plan to do things the next day, but then it gets here, and I just can’t shake the exhaustion,” he explains. “I try to go out, but I can’t . . . often for days or even weeks on end. Fibromyalgia saps all my energy.”

Lee lives alone and depends on his friends and daughter to stop by and help with chores. He spends a great deal of time in bed. “Mentally, there is so much I want to do,” he says, “but physically, it isn’t possible.”

Fibromyalgia is an unwelcome visitor that creeps in the body. It brings pain, fatigue, fog, and insomnia. Noticing it doesn’t take long; identifying it can take what seems like forever. Treatment is often a hit and miss process. Eviction is rarely possible, but sometimes, with a skillful doctor and appropriate treatments, a truce can reached.