The audience for Dr. Shelley Killen's recent talk about fibromyalgia was a snapshot of its sufferers. Out of about 100 people who had come to hear her at Boniface Hall in Bismarck, fewer than 10 were men.
In fact, women, ranging in age from 20 to 60, make up 75 percent or more of fibromyalgia sufferers, Killen said.
Though fibromyalgia is the third most common rheumatic disorder in the U.S., behind osteoarthritis and rheumatoid arthritis, it remains one of the most misunderstood of conditions and controversial among physicians, said Killen, who practices physical medicine and rehabilitation at St. Alexius Medical Center.
The fact that lab tests can't detect it - X-rays, CT scans, MRIs and blood tests will come back normal - doesn't help the "it's just in your head" skeptics, she said.
What does nail the diagnosis, Killen said, are the existence of 11 or more "tender points," symmetrical points in all four quadrants of the body that hurt when pressed.
The reassurance she can give fibromyalgia patients is that it's not all "just in your head," she said.
Fibromyalgia is associated with a host of symptoms that affect the joints, muscles and tendons. For most people, that includes stiffness, fatigue and a diffuse aching that can migrate around the body from day to day. Depression is common; some people may also suffer from irritable bowel syndrome. And sleep disruption is almost universal, intensifying all the other symptoms, Killen said.
Fibromyalgia sufferers have been shown to miss the Stage 4 or REM (rapid eye movement) sleep that refreshes and renews. So although they may have a regular numbers of hours of sleep, they will still wake up exhausted. The absentmindedness that can accompany fibromyalgia is called "fibro fog," Killen said.
Fibromyalgia symptoms range from mild to moderate to severe; severe cases can leave a person totally disabled. Some people just stop moving altogether, she said. Symptoms can interfere, sometimes drastically, with quality of life. People can feel too exhausted to move, much less exercise.
Others may become fixated on the condition, letting it run their lives to the point of becoming reclusive, Killen said.
Certified nurse practitioner Rhonda Joliffe of the Center for Integrated Medicine in Bismarck said depression goes with the territory, she said.
Outside factors can play in. Killen said her phone calls from patients with fibromyalgia triple when a weather front moves through. Stress, poor nutrition and menopause worsen symptoms.
"It's a vicious cycle, a bad spiral to break," Killen said.
So what causes fibromyalgia? Nobody knows, Killen said.
Her feeling is that, right now, fibromyalgia could be the "chronic fatigue (syndrome) of this decade," a diagnostic bucket that holds a lot of mystifying conditions, some of which may be other disorders.
There is no "cure." But fibromyalgia can be tamed in many cases, managed to a level that allows a person to function well, Killen said.
Treating fibromyalgia needs a holistic approach, including diet and lifestyle changes to improve daily functioning and relieve pain, Joliffe said.
"Diet is a really big deal," she said.
Killen recommends patients take calcium and a multivitamin.
Some medications, such as amitriptyline, can ease symptoms and help people sleep more deeply, and antidepressants can help, she said.
Other strategies include exercise, stress management, dietary supplements, thyroid checks, chiropractic care, occupational therapy, counseling, massage, biofeedback, acupuncture and education, Joliffe said.
Gentle, judicious exercise can be beneficial, particularly stretching routines involving yoga, along with gentle aerobics. The key is to start slow, Killen said.
Exercise is important, but it's a fine line, she said, to exercise enough to keep fit, but not so much that it causes pain. Killen sees a lot of "deconditioning" in fibromyalgia patients - "people just stop moving. You must get up and move," she said.
Killen commends the web site of the Arthritis Foundation (www.arthritis.org) for offering good information about fibromyalgia.
People who are concerned about symptoms should begin by making an appointment with their primary care doctor, she said. Killen also prefers that a rheumatologist make the diagnosis before patients see her.
(Reach Karen Herzog at 250-8267 or firstname.lastname@example.org.)