The worst part - there's no cure.
Sufferers of fibromyalgia don't have to imagine that nightmare. They live it. Daily.
The chronic pain syndrome, which manifests itself by widespread muscle pain, results from a chemical imbalance in the brain, causing sufferers to perceive pain differently than the average person, said Dr. Neal Shparago, a Jackson rheumatologist of 15 years.
"There are many physicians who do not believe fibromyalgia exists," he said. "I believe it exists and try to treat it - sometimes successfully and sometimes not."
Stress, sleep deprivation and traumas are triggers of fibromyalgia. It is a common malady, said Shparago, who has seen an increase in the number of patients diagnosed in recent years. Fibromyalgia and chronic fatigue are basically one and the same, according to Shparago.
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| Chinika Hughes-Hood walks along the water near the Canebrake subdivision in Hattiesburg, Miss. The stay-at-home mom suffers from fibromyalgia, a chronic pain syndrome. 'I'm in pain from sunup to sundown,' she says. Stress, sleep deprivation and traumas are triggers of fibromyalgia. |
An estimated 3 percent to 6 percent of the U.S. population has the debilitating disease, according to the National Fibromyalgia Association. Women are affected most, but men and children also fall victim to the condition that remains a mystery.
Chinika Hughes-Hood was a 25-year-old television journalist in Houston when her life took an abrupt detour. Sitting in a chair at work, she attempted to stand but couldn't.
"I thought I was just tired," said Hughes-Hood, now 31. "I thought, 'Girl, get up from this chair.' I went to the break room to try to regain some kind of energy, and my knees buckled. I made an appointment that day."
A rheumatologist soon diagnosed her with the early stages of rheumatoid arthritis. Despite medication, her symptoms - constant pain, swollen knees, fatigue, insomnia, burning sensations ("like sitting next to an oven"), memory loss - grew worse over time.
"I couldn't get any relief," said Hughes-Hood, who has since relocated to Hattiesburg, Miss., with husband DeCarlo. "I would hear, 'It must be in your head' because those symptoms were not a part of rheumatoid arthritis."
Hughes-Hood insisted something else must be wrong. Two years and three rheumatologists later, she was also diagnosed with fibromyalgia. The inquisitive journalist, who had left her job because of the unrelenting symptoms, had mixed feelings.
"The diagnosis was confirmation that it's not all in my head," said Hughes-Hood, who had learned just weeks before that she was pregnant. "But at the same time, I felt a tremendous sense of urgency because there is no cure. I looked at (the doctor) and said, 'So you mean to tell me I'll have to deal with this every single day or moment of my life?' "
Hard to treat
Fibromyalgia is a difficult disease to treat because there is no consensus among specialists as to its origin, or cause, said Shparago. Treatment is, therefore, a matter of trial and error.
The only Food and Drug Administration-approved drug is Lyrica, said Shparago. Tricyclic antidepressants and antidepressants such as Cymbalta are also commonly prescribed. Drugs can only do so much, however. Patients suffering from the chronic illness must go a step further.
"It is very possible the patient may return to normal, but I tell my patients that they will never completely be rid of the illness, and that they need to make lifestyle choices which will ease their discomfort," he explained.
Because stress is a trigger, Shparago said it is paramount that patients get adequate sleep. Exercise, he explained, is also critical because it causes the body to release endorphins, chemicals emitted from the brain that act as natural pain relievers.
Two years after Hughes-Hood's diagnosis, she is a stay-at-home mom to daughter Halei, who is almost 2, and creator of an online, talk show-inspired magazine at www.chinika.com, which allows her to be her own boss and work at her own pace.
Because she suffers from the two debilitating diseases, Hughes-Hood takes a nerve-deadening pill, which causes drowsiness; a narcolepsy pill to combat low energy; pain medication; and a sleeping aid at night.
"I'm in pain from sunup to sundown," she explained. "Like I've been run over by an 18-wheeler. I'm always on some level of pain. Sometimes it's a one or two on a scale of one to 10. Other days, it's a 10-plus. Most days, it's a six."
"I want to be pain-free as much as possible to manage the illnesses," she said. "To find that balance between illnesses, family and career. And a peace of mind to find that balance."
Sisters share pain
Some sisters share almost everything. It's natural, even expected.
Carol McCrackin, 50, wasn't banking on inheriting her older sisters' chronic illness, but it's something she knew was likely.
After Jacqueline Brown, 57, and Shirlene Miller, 53, both were diagnosed with fibromyalgia during their mid-40s, McCrackin began researching the syndrome. What she learned prepared her for what was to come.
"When I started having aches and pains (about 10 years ago), I went to the doctor with the attitude that I might have it because it runs in the family," said the Jackson, Miss., resident, who runs a business from home with her husband. "I was not surprised when I was diagnosed with it, too."
Jackson rheumatologist Neal Shparago said the medical community does believe there is a genetic link associated with the chronic disease.
"There are what have been called candidate genes that may be involved in the genetic link in family members," Shparago said. "These genes may lead to the chemical imbalances in the brain that lead to fibromyalgia."
When Brown, of Utica, Miss., the first of the siblings to be diagnosed, learned of her condition in 1996, she was shattered. The debilitating pain and fatigue, among other symptoms, had prompted her to take a three-month leave from work as a college instructor before the diagnosis. Unlike McCrackin, she was ill prepared.
"When the doctor told me it was fibromyalgia, it was the first time I had heard that word," she said. "The psychological part of it was devastating. It was like I ran into a brick wall and crashed."
Miller, 53, was initially in denial about the disease, and didn't even tell her sisters at first. A former firefighter with the Vicksburg Fire Department in Vicksburg, Miss., she had been extremely active. The fact she shares the syndrome with her sisters has helped the Brandon, Miss., resident cope with the illness.
Each of the sisters also has been diagnosed with at least one additional chronic illness, which occurs often in patients with fibromyalgia. McCrackin has lupus; Miller, who is disabled, has degenerative joint and disc disease and arthritis; Brown has chronic immune dysfunction syndrome.
Because of the ailments they share, and the miles between their residences, the three don't see each other as often as they'd like. But they share an even stronger bond than before.
"We're not just siblings; we're now close friends," McCrackin said. "We understand each other. Fibromyalgia has impacted our lives in a positive way."
"Fibromyalgia is not something that we discuss often, but we have compassion for each others' pain. Also, the three of us read and research the Internet and share solutions to the problem," Brown said.
And then there must be people with fibromyalgia that don't believe in physicians. I benefitted more from searching the Web and learning about the connection between fibromyalgia and sleep problems than I did from seeing doctors that were largely clueless about fibromyalgia and that suggested treatments that they themselves said didn't do much good.