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Living with Fibromyalgia
Part One - Detours Along the Way
By Jeff Durbin
Julia Baurichter will tell you all about the wrong turns taken over the years of treating her fibromyalgia.
The many years of detours have also been a long, if frustrating, medical education.
Baurichter was diagnosed with fibromyalgia in 1985, when it was called fibrositis. Even then, she tested 18 out of 18 for pain at the fibromyalgia tender points.
She suspects she may have had fibromyalgia much earlier, but her medical problems were a 500-piece puzzle with no picture to compare to.
"You wouldn’t tell the podiatrist you were having eye problems, so nobody ever put it together," Baurichter says.
That is one of the hallmarks of fibromyalgia -- widespread symptoms that can, according to the Centers for Disease Control and Prevention, include pain throughout the muscles of the body, sleep disorders, fatigue, headaches, and irritable bowel syndrome.
After the diagnosis it took Baurichter five years to acknowledge her illness to herself and others.
"For years, I was pretty passive about it," she says. "I was confused. Every person I went to gave me a different thing to do."
Actually, fibromyalgia patients today will still not find anything close to a consensus on treatment, medication, or the cause of fibromyalgia. But for the most part, awareness that there is a real condition called fibromyalgia carries with it research dollars and serious attention by physicians.
Keeping Track of Symptoms
Baurichter says changing doctors is scary for someone with fibro, but that she had good care. Her health problems were multiple. In her 20s she had viral meningitis and migraines, as well as severe temporomandibular joint disease (TMJ). She saw a chiropractor and podiatrist, and suffered eye and bladder problems. She also had pain that migrated from her hip to her wrist to her shoulder.
"It left me just confused, and I kept thinking this is great, but it’s not helping," Baurichter says. "I got in a stalemate about what to do right."
Baurichter also had a full life to deal with.
But along the way, she gradually learned to keep track of her symptoms and her medications, and inform each physician she saw.
Taking Time for Pain
"As a young mother with three kids, I was busy," she says. "I didn’t want to take the time for pain, and I didn’t."
Starting with her headaches in college, Baurichter had taught herself to work even harder when the pain struck.
"I consciously turned on adrenaline to do what I needed to do," she says. "That became a habit. To function, I had to turn on adrenaline. That raised my heart rate."
Years later, she found that pain was instead a cue to back off.
Exercising Properly
She also did not have the advantage of knowing, for example, how to exercise properly. Baurichter exercised, all right. But she worked her body so hard that she suffered even more injuries.
"I tried to exercise," Baurichter says. "That was frustrating. I kept feeling I was failing." Her husband, Steve, a physical therapist who encouraged her to exercise, could not understand, and neither could she.
Research with fibromyalgia and arthritis patients now shows that regular, gentle exercise is the best approach.
Baurichter also did not sleep well because of pain.
"I’d wake up in the morning feeling like I’d been run over by a truck," she says. "That overshadowed everything."
Monitoring Meds
Health-care providers now take more care to caution patients about the possible effects of drug interactions, especially with the surge in using herbal supplements.
Because Baurichter had so many symptoms - "I’ve been called the absolute classic case," she says - she took many medications. She took an anti-inflammatory for arthritic pain, a sleep medication, a migraine medication, something to keep her adrenaline in check, and beta-blockers to slow her heart rate. A few years ago she began taking herbs, with excellent success.
"Anything anybody’s says, I’ve tried," she says. "When you’ve had it as long as I’ve had it, you’ve heard everything."
But it may have been that open approach to medications that led to trouble.
"You keep stacking them up and taking more and more," Baurichter says.
Baurichter had surgery in January 2000 for two ruptured disks. Besides being another health obstacle to hurdle, new medications masked what was happening to her body.
Maintaining Hope
Baurichter became extremely ill in July 2000. She vomited for four straight days, and her heart pounded. She lost 20 pounds in a month.
"I feel I became toxic," Baurichter says. "I was taking so much stuff. They’re not long-term."
But that month turned things around for Baurichter.
"That was like an answered prayer to me," she says.
Part Two - Searching for Solutions
Part Three - Making a Life
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