Karen K. is a 45-year-old postal clerk. She's suffered from fibromyalgia-related pain for at least 18 years, and was diagnosed 12 years ago. Despite frequent bouts of pain and regular episodes of irritable bowel syndrome (IBS)—a condition common among fibromyalgia patients—Karen considers herself lucky to be able to pursue hobbies like gardening and remodeling projects around her home. The divorced mother of two is currently helping plan her daughter's wedding.
What was your first sign that something was wrong? What symptoms did you experience?
About 18 years ago, I started having trouble with pain in my hips. A lot of times I couldn't get out of bed. Walking was painful. Then I began to have pain in the muscles in my shoulders and neck. It's not like muscle soreness after you work out. It's a soreness like if you put on layers and layers of clothes—it's that kind of tightness combined with aches that will last a couple of days. If it gets into my neck, it can last for weeks.
I also started having IBS—basically diarrhea. It was very hard to even go out sometimes because I was afraid of having diarrhea. It would come in waves. I'd rather you cut my arm off than have to go to the grocery store. Tests on my colon would always come back that there was nothing wrong.
What was the diagnosis experience like?
There was one episode when I had to be taken to the hospital by the life squad because of really bad pain in my shoulder and neck. I was at work and had pulled some muscles. After that, I went back to my doctor and he went over a variety of symptoms of fibromyalgia. I had all but two of them.
What was your initial and then longer-term reaction to the diagnosis?
I had never heard anything about fibromyalgia before, so I was thankful that someone knew what it was—that a doctor believed in the pains that I had. Since I didn't look like I was sick, sometimes people would look at me like they couldn't believe that I was. My daughter is a nurse—she had been saying that a lot of medical people believe that fibromyalgia is all in somebody's head.
How do you manage fibromyalgi