Santa Carver's
Fibromyalgia Page

In 1980, I was 36 with a 6 year old son, when my husband was taken from us in a fatal car crash. I thought I was handling everything fine until a year later. I tore my achillies tendon in a Jazzercise class, and from then on I had one ache and pain after another. I finally sought help and my GP started me on HRT and suggested I slow down on the exercise because I might be starting some arthritic changes. In 1983 my GP sent me to a Rheumatologist who misdiagnosed me with Rhuematoid arthritis. I took all the NSAID's that he prescribed with no lessening of pain and only gastro problems caused by them. I was sure the pains were not in the joints, but in the surrounding muscles and tendons, yet he would not listen to me. By 1990, I was fatigued to the point of not being able to do anything and I couldn't get out of bed, because of the pain. I decided to start eliminating possibilities. I went to an orthopedic surgeon who took x-rays of my ankles, knees and hips, as that's where the pain was the worst at that time. He informed me I had great bones and no arthritis. He also told me about a Dr. Robert Bennett up at Oregon Health Science University Hospital, that was a leading doctor in this new syndrome, called Fibromyalgia (FMS).

In 1991, after waiting 6 months to get in to see Dr. Bennett, I was examined, manipulated, poked and prodded and I had to fill out numerous questionaires, before Dr Bennett diagnosed me with FMS. He placed me on amitriptilyn first, to help with sleeping and pain. After a week of no difference except weight gain we tried Flexeril. It was used at my urging, as I had used it before, as a muscle relaxant. I felt better after taking it, but I still was not sleeping well. I would fall asleep, wake up an hour later and look at the clock, roll over and go back to sleep for an other hour, then wake up and look at the clock, and so on, all night long. After more interrogation, I discovered I had Restless Leg Syndrom as well as FMS. I take a 10 /100 mg. Sinemet at night, which is a Parkinson drug, for my RLS and now my legs are quiet. Between the Sinemet and Flexeril I sleep much better and the pain has subsided some.

Dr Bennett told me, "You won't die from this but, you will die with it. So, are you going to let it control you, or are you going to control it?" Those were the best words ever spoken to me, about Fibromyalgia. I am definitly the controlling personality, so I researched and read everything I could lay my hands on, about Fibromyalgia, and I educated myself about it. Pacing myself was the big factor for me, as I used to do everything in high gear and I didn't know how to work in any other mode. I have to admit, it probably took me 3 years to actually learn how to pace myself. Now and then I forget, and when I forget, I pay for it that night and next day or two.

To cope, I've traded some of my pleasures for others. For example, I use to love to be in my yard, planting, cleaning, mowing etc., but I found that after 3 hours of doing yard work, I'd be tripping, falling, dropping things, cutting myself instead of the plants, and screaming with self-pity. Now, I garden for only about 1 hour instead, then I retreat to my deck and either read or carve my Santas, which have become my salvation. When I clean the house, I don't have to have to do the whole house any more. If I do one room, I feel good about that accomplishment. I think the most difficult thing for me, about having Fibromyalgia, is that I can't do my Jazzercise classes like I use to. I have gained way too much weight, and can't be physically active like I use to be and self-pity really sets in. I have to put things into perspective and look at others worse off than me and that seems to really helps. Having a good FMS, CFIDS support group helps, as long as things stay positive. It is so easy to become negative when you are living with chronic pain, and it takes alot of energy to stay positive.

The most important thing that I would tell a person, newly diagnosed with Fibromyalgia, is exactly what Dr. Bennett said to me - be responsible for finding out everything you can about your illness and stay in control..