“I think the biggest discouragement is that many people still don’t believe fibromyalgia exists,” said DeAnn Starling, a Murfreesboro lawyer turned stay-at-home mom. She was diagnosed with fibromyalgia in the mid-’80s.
“People still just don’t understand. It used to be hardest to convince doctors. They thought I just had depression. I try and explain to people why I just can’t do mind over matter. I thought I could do it, too, but I can’t. It’s invisible. You can’t see it, so it’s very hard for people to grasp.”
According to the National Fibromyalgia Association, 3 to 6 percent of the United States’ population suffers from fibromyalgia, but some people still don’t acknowledge the condition exists.
“There’s been some controversy about it,” said Dr. Joshua Hixon from Family Practice in Smyrna. “It was thought to be a non-entity for a while and it took some time to gain standing. There are still people who believe it’s more of a psychological thing.”
However, the people who suffer from fibromyalgia know the pain is real. Starling described the sensation as feeling like she’s been poisoned, but said there’s more to it than that.
“It’s hard to explain,” she said. “You’re not just dealing with pain. You feel sick all the time when it flares up.”
Carol McCauley of Murfreesboro knows the pain exactly. She woke up one morning in 1983 and couldn’t move.
“I had extreme fatigue and muscle weakness,” she recalled. “I was finally able to move, but I had to concentrate really hard. There’s two main characteristics: widespread pain and fatigue and muscle weakness. I tell people it’s kind of like arthritis of the soft tissue.”
Dr. Hixon explained symptoms of fibromyalgia as chronic pain throughout the body and muscles, stiffness, fatigue and muscle soreness on specific points lasting at least three months. He said the syndrome is still complicated to diagnose, but doctors now have a sort of checklist of things they look for.
“There are 18 different points we check for tenderness,” he said. “You have to be tender in 11 of them. We put about 10 pounds of pressure with our fingers on the points to test.
“It’s often a diagnosis based on exclusions,” he continued. “Sometimes we look for other conditions first, rule those out and meet the criteria to get the diagnosis. Besides the focal points, there is no test.”
Hixon also pointed out that fibromyalgia seldom acts alone. Patients with fibromyalgia generally suffer from other ailments, such as Chronic Fatigue Syndrome, irritable bowel syndrome and depression.
“There seem to be a number of things that come with fibromyalgia,” said Hixon. “Pain is what they complain of, but when you delve into it, there are underlying things. You can’t prove pain. You can’t do a blood test or an X-ray, so it’s harder to believe. They’ve even taken muscle tissue under a microscope, but they can’t determine what causes it.”
R. Scott Weiskittel, director of physical medicine at StoneCrest Medical Center, described fibromyalgia as “a mystery to the medical field.”
“Studies have found that neurotransmitters may be involved with the condition,” said Weiskittel. “They communicate the sense of pain to the brain. They found patients have three times the amount of the substance that enhances the sensation of pain. If we go out and rake the yard, we might have muscle soreness. They feel that three times stronger.”
Other hormone irregularities include inadequacies in endorphins and serotonin.
“They have 50 percent less than in healthy folks,” said the director. “Endorphins give people a natural high that helps with pain. If you have less endorphins you will have more pain.”
Serotonin is the chemical that regulates mood and is released during the REM sleep cycle.
“Fibromyalgia patients have less serotonin, and that’s linked to headaches and depression,” explained Weiskittel. “So they treat it with antidepressants to relieve anxiety and headaches.”
Weiskittel continued to say that most fibromyalgia patients can manage the syndrome’s symptoms with a combination of medication and light physical activity, such as low-impact exercise, stretching, light strengthening exercises, sleep management and nutrition.
“There’s a lot of components to getting a person better,” he explained. “It’s just a matter of getting the person on board and into the right hands. The prognosis is better than it’s ever been.”
Seven steps to finding the right fibromyalgia doctor:
1. Define your specific requirements.
Ask yourself: Do I need a specialist? How far can I travel? Does my insurance restrict who I can see or where?
2. Make a list of potential doctors by contacting state and county medical societies, hospital referral services and support groups.
3. Make phone calls to find out which doctors are accepting new patients and office hours and locations.
4. Interview doctors to find out how many fibromyalgia patients they’ve treated previously and their general course of treatment.
5. Check credentials with the American Board of Medical Specialties at www.abms.org.
6. Speak with your insurance company to make sure the selected doctor is on the plan or if you need a referral to see him.
7. Choose the doctor you would like to try and schedule an appointment for a complete evaluation as a new patient.
(Information provided by The National Fibromyalgia Association.)
Originally Published May 6,2006 in The Daily News Journal, Murfreesboro, Tennessee