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Sarah B: CREST Scleroderma

Needless to say, the doctor did not have a very good bedside manner!

In 1991 my hands started swelling and my face was puffy in the morning. I did not go to a doctor then because it was intermittent.

By the summer of 1992 the swelling started to happen more often. My hands were sensitive to cold and getting contractures at the knuckles and were painful. My shoulders and hips were stiff and painful. I figured that it was arthritis and made an appointment with a rheumatologist. He did some tests. When the results came back he told me that it was CREST scleroderma. He prescribed prednisone, but when I found out what the side effects were I told him that I did not want to take it. He did not explain what scleroderma was, so I went to the library and researched it. Boy, did that scare my husband and me! Needless to say, the doctor did not have a very good bedside manner!

I had up and down days but still did not want to take any chemical medicines. In March of 1993 I learned that we now had a naturopathic doctor in town, and I went to see her. I have to say that that was the best decision that I had made! She did a thorough exam and history. She put me on some herbs and vitamins. It took about three months, but the pain and swelling went away.

She had me see a rheumatologist, a cardiologist and a pulmonologist at different times to make sure everything was going alright. Everything was going along fairly well until the fall of 2000. My blood pressure went up. My naturopathic doctor tried herbs to control it but they just could not keep it down to an acceptable level. In March of 2001 she had me go to the rheumatologist to see what he thought.

He prescribed an ACE inhibitor and I had a reaction to it. My hand swelled up, turned black and hurt so bad that it was an hour before I could even call his office. When I did call and told them what was going on, the nurse talked to the doctor and then advised me to cut the next dose in half and take ibuprofen for the pain. Dumb me, I took another dose. I had to go to the emergency room. They took me right in and within ten minutes, had given me a shot for the pain. My blood pressure had skyrocketed.

They gave me something to counteract the ACE inhibitor. I was on morphine for eighteen months. I lost the tips of my baby finger and thumb. The other three fingers do not look too pretty, either. So my naturopathic doctor promised that I never had to go back to him! She did have me go to my pulmonologist and he put me on Norvasc.

I am maintaining now. I just went to a new rheumatologist and he is running some tests; creatine phosphokinase (CPK), bone scan, and echocardiogram. He was very concerned and kept looking at my hand and saying that it must have been very painful. I think that he is a keeper!

I want to put in here that I think it is very important to have a good working relationship with doctors. I feel that I am very fortunate with mine. My pulmonologist told me to call any time that I had a question and my naturopathic doctor gives me hugs!

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ISN Artist: Ione Bridgman

ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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