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In her own words: living with fibromyalgia

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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 fibromyalgia?

I walk a lot because my doctor told me it's good for me. I walk five days a week, three miles a day. It feels good to get out. If I don't walk, I can have trouble.

Around my period I have to be very careful—if I just twist in a way that is slightly different than usual, I'll pull a muscle. At work, I lift, but I watch that now I won't pick up really heavy packages. I also know that if I spend a day working in the yard like I used to, I'll be really sore.

Did you have to make any lifestyle or dietary changes in response to fibromyalgia?

I've tried special diets and drink mixes, but they didn't help me, and I don't want to start on any long-term medicine unless it would help my IBS. When I know I have to go out for a special occasion, I'll take an anti-diarrheal medicine and that will help me through it.

I also try to let things that normally would upset me roll off because I know that stress triggers my symptoms.

Did you seek any type of emotional support?

No. I still feel I'm very lucky. My mom had MS and died when I was 15. What I have to go through doesn't seem like anything compared to what she went through.

Does fibromyalgia have any impact on your family?

It does. I'm constantly aware of it. I used to be a mail carrier. I carried in a small town where there are only two public bathrooms. It got to the point where I would be afraid to go out and walk. I used to love to go out and go do things. My husband couldn't understand why I didn't want to go out anymore. Even to walk around the block scared me.

My kids never understood it while they were growing up. I didn't want to go anywhere there wasn't a bathroom. If I'm around the house it's not so bad, but just being out and being afraid something could happen, that triggers a lot of my symptoms, especially the IBS.

What advice would you give to anyone living with fibromyalgia?

This isn't in your head. This is a legitimate disease. You need to find a doctor that believes that you do have it. Even though the pain can get you down, you can find ways to live with it. Figure out what triggers your symptoms'a lot of times it is stress. Also, exercise can help. It seems one of the best things you can do is keep yourself limber to minimize the discomfort.

Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.