After I turned 27, I started having more problems: bladder infections, shingles, chest pain and 102-degree fevers. The most striking symptoms were fatigue and persistent muscle aches. It felt like I had worked out on a StairMaster to the point where my legs gave out, then gone on the Nautilus machine until my arms were also exhausted. This feeling of post-exercise soreness didn't go away no matter how much I rested.

My doctor said, "Something seems to be amiss with your immune system, but I can't find anything wrong." I saw 12 more doctors, but none of them helped. At this point in my life, I was living in California, and decided to visit a diagnostic clinic in Santa Barbara. The specialists there diagnosed me with chronic fatigue syndrome. When eight months passed and it didn't go away, they examined me again. They pressed 18 different points on my body, and when I told them that this caused me pain, they told me I had fibromyalgia syndrome. My doctors said, "There are no treatments for this condition. We can't help you." I was unhappy about the diagnosis, but glad that my husband would finally understand I wasn't making this up.

At my doctors' recommendation, I quit my job as a chemical engineer and tried to rest up and take care of myself. I devoted my spare time to learning everything I could about fibromyalgia. I discovered it was a chronic condition characterized by fatigue and muscle aches but not well understood by the medical community. I joined a patient network in California and started running a support group there. Then I became even more proactive, testifying before Congress, lobbying for government funding, and founding two organizations: the Fibromyalgia Network, which is devoted to patient and physician education, and the American Fibromyalgia Association, which has raised $600,000 for fibromyalgia research.

Now that I've moved to Arizona, I'm seeing a doctor here and continuing my networking with international fibromyalgia support organizations, as well as with patients across the United States. To cope with my symptoms, I take drugs for spasms, sleep problems and pain. I go to physical therapy, get massages and use a special neck pillow while I'm sleeping and special elbow props while I'm working. I have neck and back wraps that deliver heat to my aching muscles. To get my pain levels down to the point where I can sleep, I sit in a Jacuzzi every night and stretch my muscles. My doctor recommended some of these treatments, and some are ones I stumbled on myself. With fibromyalgia, it's often up to individual patients to find out what works best for them.

Living with fibromyalgia has changed my life dramatically. When I was younger, I was very athletic, and would run three miles a day, play racquetball two nights a week, and perform three belly dance sets every Friday night. I can't do any of these things today. My daughters, who are nine and 14 years old, sometimes have a hard time with my being ill. I don't have a sign on my forehead that says "I'm not feeling well today. Don't ask me for anything." I have to pace myself and say no a lot.

I can't get insurance to cover my treatments — partly because I'm self-employed, and partly because my condition is not yet accepted by the medical establishment. Fibromyalgia costs me about $10,000 a year. This is typical: Only a few fibromyalgia patients can get regular coverage. As more research is done, it is going to become more difficult for insurance companies to say that this condition doesn't exist.

Fibromyalgia tends to draw controversy, but shouldn't. There is enough data to prove that the symptoms have a basis, including several chemical abnormalities in the spinal fluid of fibromyalgia patients. Before multiple sclerosis was accepted by mainstream medicine, doctors didn't believe it existed either. Fibromyalgia is very real, and over time, the medical establishment will come to recognize this and treat this condition accordingly.