Painful Disease Eludes Testing : Fibromyalgia Frequently Misdiagnosed, But as Many as 3 Million in U.S. Have It
Imagine that the skin on your hands has been slowly peeled off. Then imagine the raw tissue is exposed to the sun for hours.
This is how Patty Dicker, 41, of Newport Beach describes the pain caused by fibromyalgia, an often-misdiagnosed and little-researched disease from which she has suffered for 11 years.
Also called fibrositis, the affliction is most common to women (one male for every 10 female victims) and is one of the most prevalent, debilitating and painful forms of arthritis, afflicting an estimated 3 million people in the United States alone.
It is a rheumatic disorder with varied symptoms, ranging from sharp or burning pain to deep aching in the joints, muscle spasms, headaches, and even feeling bruised from head to toe--so bruised that even the touch of light clothing is agonizing.
And while it is not life-threatening, many victims say they have longed for death during a flare-up--a time when on a scale from 1 to 10, the pain is at a 10.
“Oddly enough, the pain can move and change within five minutes. It can go from your hands to your knee or neck, or all over the body,” said Dicker, a tall, willowy blonde who looks the picture of health. “You can feel no pain and go to open a door and pull back because the doorknob has hurt you. It’s like living in a mine field. You never know what’s going to hurt you. I look at myself and I look healthy. My hand looks normal and yet it’s burning with pain.”
Loss of energy is another symptom of the disease. Many sufferers don’t have the strength even to brush their own hair, let alone maintain a job or take care of children and household duties.
“I’ve always been very active,” says 58-year-old Amy Howard of Brea, who started having symptoms of fibromyalgia in 1984 after suffering a back injury at work. She has been to countless doctors and through hundreds of tests in the past four years. But the disease is undetectable by most medical tests and is often dismissed as “all in the head.”
“At times, I thought I was going crazy,” Howard said. “It was hard to explain the pain because it changed daily, sometimes hourly. I was exhausted all the time and as a result very depressed. I felt the doctors just thought I was a hypochondriac.”
More than once, Howard was told she should see a psychologist. Even her husband and children were skeptical at first.
“I felt so guilty about not being able to work or do housework. I could just lie around all day and when I heard my husband’s car in the driveway I would struggle up and pretend that I was doing something.”
She recently visited a rheumatologist who diagnosed her as having fibromyalgia.
“It was almost a relief. Now at least I know I’m not going crazy,” she said. “But I must learn to live with the disease.
“It’s very frustrating. I’ve always loved people, always loved to work. Now I don’t even have the strength to play with my own grandchildren.”
Being told it “was all in the head” is a common story among the afflicted because many doctors are unfamiliar with fibromyalgia (of about 500,000 physicians in the United States, only 3,000 are rheumatologists).
“Part of the Arthritis Foundation’s goal is to educate health professionals about it,” said Pat Atwell, spokesperson for the local chapter of the foundation, located in Santa Ana. “Fibromyalgia is new, within the past 15 years, as far as any research being done and even in naming the disease.”
Dr. Don L. Goldenberg of the Arthritis Center at Boston University said:”There were no scientific papers related to the syndrome presented at the annual meeting of the American Rheumatism Assn. in 1981, but there were nine presented in 1987.
“One of the ‘state-of-the-art’ lectures at the 1987 meeting was a review of fibromyalgia. At our annual meetings, the attendance at the nonarticular-rheumatism study group, largely devoted to fibromyalgia, has tripled in the past five years.”
There is no set definition of the disease. The symptoms are varied and vague. However, most North American rheumatologists seem to agree that patients with fibromyalgia have the following common features: widespread musculoskeletal pain (usually accompanied by stiffness that is worse in the morning); chronic fatigue and poor endurance; the presence of multiple tender points; a variation in symptoms depending on the weather, overexertion and stress, and a decrease of symptoms with heat therapy.
Two years ago, 58-year-old Norma Borie of Long Beach awoke feeling as though she had torn every muscle in her chest. The following day, the excruciating pain had spread to the rest of her body, so unbearable that she had to be hospitalized.
After finally being diagnosed, she said, “I remember lying in my hospital bed and hearing the nurses whispering about me in the hall as they looked at my chart. Only one of them had even heard of the disease. They were afraid to care for me because they didn’t know what the disease was.”
Borie says she made up her mind then that she would do everything in her power to help promote research and education for the disease and donated $300,000 to the Arthritis Foundation for just that purpose.
Because of her donation and others, word is spreading via telethons, literature distributed by the Arthritis Foundation and symposiums.
Recently, support groups have been formed for sufferers of the disease. FAN (Fibromyalgia Awareness Network) in Orange County had its first meeting a year ago. Sixty women showed up.
“It was a very emotional meeting,” recalled Betty Moriarity, a 62-year-old Long Beach teacher who was forced to take early retirement because she kept falling asleep in class.
“There was a lot of crying. It was such a relief to know that you’re not alone. Just to be able to communicate with others who could relate to the pain and psychological stresses you’ve been through brought a certain amount of serenity. I was amazed that there was such a large number of us.”
FAN meets every fourth Tuesday from 2 to 3:30 p.m. in the Plaza Classroom at the Medical Center of Garden Grove.
The group offers discussion sessions as well as speakers such as Dr. Bob Merlino from the Chapman Pain Clinic, who recently spoke on the control of pain.
A cure has not been found for fibromyalgia. Once diagnosed, patients are put on a combination of therapies to help control the symptoms. These include diet, antidepressants, exercise, cortisone shots at the trigger points, biofeedback, heat massage and pain-coping techniques.
Therapies and their effectiveness differ from patient to patient. Patty Dicker considers herself lucky. Her first therapy of medication left her pain-free for almost three years. Her next flare-up was not eased by the same medication, and a whole new combination of drugs was prescribed. She had two more years free of pain, although her trigger points never disappeared. She recently had another flare-up and began exploring a new medication therapy.
Norma Borie has never been free of pain. “I’m always in about a Level-7 pain. When I have a flare-up, I feel as though I’m going to die.
“I’ve always been a very physical, touch-oriented person. My husband used to lay next to me at night and hold my hand at first--but now the pain is too much even for that. The thought of someone touching me makes me cringe. I miss my hugs.”
