anice E: CREST/Fibromyalgia

Where to start? It is hard to find a starting place. I guess I will start by saying that fatigue has always been a part of my life. It has been my constant companion all of my days.

When I was in high school I tried to work and go to school also, and some days I had to force myself out of bed. There were days when I could not do that and I would stay home from school. I do not think that my mother even understood that I was really sick! My psychology teacher asked why I was missing school and I said that I had been sick. She said that anyone that sick needed to be in the hospital! For a teacher she was not very compassionate, but I managed to graduate anyway.

I married and got pregnant the year after I graduated and during a emergency C-section a tumor was found on my ovary. It turned out to be cancer and after another surgery, six weeks after the birth of my beautiful daughter, I started chemotherapy. That was miserable. I was really sick then and lost my hair, a lot of weight and the body aches began in earnest then. The terrible fatigue was even worse. After I completed the chemotherapy, the joint pain got somewhat better but to this day has never gone away and some days it is almost unbearable.

At some point I came to the realization that what I was feeling just could not be normal. By this time my hands were swelling. I could barely stand the joint pain, and to top it all off my hands and feet would turn totally white when I got cold. When I would go in for check ups I would tell my doctors about it and they did not seem concerned. I truly think they thought that just because I had gone through the cancer that I was now imagining things.

I went on to have one more daughter (I still had one ovary) and to hold down a full time job. I sometimes wonder how I did it. My husband is not compassionate or too terribly helpful. I feel like a single parent.

One morning I was the first one at the office and I picked up the newspaper and saw an article on lupus and I had most of the symptoms. During this time I had gotten a new insurance plan and my new primary physician was a woman. I took the article, feeling like an idiot, and showed it to her. She said that all we could do was do the blood work. My ANA was positive, very positive. She referred me to a rheumatologist.

He said I had CREST and down played the symptoms and almost dismissed the idea that I was in pain and said I had a sleeping disorder that caused most of the fatigue. The next time that I saw him I asked about some of the things that I had read about, the pulmonary hypertension, bowel problems and the Raynaud's. He really just talked over my head and never really addressed the fact that he had done no testing other that what my primary physician had sent him on the blood tests. He now attributed some of my pain to fibromyalgia and gave me muscle relaxers to help me sleep.

So, I am on the hunt for a doctor who will really listen and not just see me as a hypochondriac! I am inclined to agree with some of the stories I have read: Half of the people do not want to hear your health problems and the other half do not believe you! So, for the most part I keep it to myself. I want to give my girls the most normal life I can. I look forward to the time when they are grown, so that I can slow down some. I am just praying that I can paint on a smile for a few more years.

You know, I think my high school teacher was right. Someone that sick SHOULD have been in the hospital.