One day in 1986, I noticed the index finger on my right hand was continuously cold, as if I had an elastic band around it. This carried on for the next two weeks, until I went to my doctor about something else and just happened to mention this. He was not interested in the illness I had gone to see him about, but he looked very concerned about my finger. He arranged for me to see a consultant that same day.
The consultant examined my finger thoroughly and said there was no pulse in the end of my finger. He presumed I had a blood clot in the finger. For the next twelve months or so, I underwent every test imaginable; I even had an endoscopy. They thought I may have had a blood clot elsewhere and a bit had broken off and traveled to my finger. Eventually they said they did not think it was anything important, that I should stop smoking and everything would be fine.
When I saw my consultant again, my finger had started ulcerating, and a couple of other fingers started doing the same. They ran more tests and eventually, I had a diagnosis of CREST. The consultant explained it to me briefly, but implied it was not too much to worry about.
However, four years before this, I had been referred to the same hospital for an ulcer on my toe, and pain and swelling in my wrists. The consultant at that time also said there was nothing wrong with me. He put it all down to stress, and I left the hospital in tears. I have since been told these were symptoms of CREST.
For many years I have suffered with stomach problems and migraines, and I have only recently found out they are all connected. I have acid reflux. I had Helicobacter pylori, a stomach ulcer, and a hiatal hernia. Although I have been under the same hospital's care for all these problems, nobody linked it to the CREST. I stopped seeing my consultant three years ago because I was not getting any treatment except aspirin, and I was not made aware of the seriousness of my complaint.
Recently, I started suffering with severe stomach pain, and I went to see my local general practitioner (GP). I told him about the pain. I also mentioned that I had what I call ?blood spots? on my lips and hands, and a large lump in my thumb that kept coming and going. He referred me for yet another endoscopy. He also startled me by saying, ?What do you expect? You have CREST, which is a progressively worsening condition.?
It was then that everything added up, that I did not have several different conditions; rather, they were all part of CREST. The lump in my thumb is calcinosis, the C in CREST. I already knew I had Raynaud's phenomenon, which is the R in CREST. All my stomach complaints are esophageal related, the E in CREST., and the blood spots are telangiectasia, the T in CREST.
I also have many other complaints, which after reading information on the Internet, I believe may be related. I keep getting boils everywhere, and I seem to have at least two at any one time. My GP has referred me back to my consultant, at my request, and I will not leave the hospital until I am fully aware of what to expect in the future.
What surprises me was that four years ago, I had a cold finger and was told it probably would not get any worse. Now I have nearly all the symptoms of CREST, and I worry what the future holds. I am only thirty-four years old and have two sons, ages fourteen and sixteen, and a daughter age three.
Will the CREST stop me from being the kind of mum I want to be? I have so many questions. I have read on the Internet that people die from this condition. Will that happen to me? Each day I hope my symptoms will not get worse, but when so much has happened in four years, I do not feel very positive.
I recently went to the dentist with a severe toothache. The dentist refused to treat me for a root filling because he did not understand CREST. I had to wait another three weeks to be treated and even then, a different dentist had to do it because the original one was still unsure. Nobody understands when you explain the condition.
If you have asthma, multiple sclerosis (MS), or any other well-known condition, if you tell people about it, they understand. They will help carry your bags or will not allow you to do things that are detrimental to your health. However, try explaining to someone that you have CREST and would they mind doing this for you, and they think you are a hypochondriac (which I have been called many times, even by my own family). People just see the outside.
I look like a reasonably fit young woman, so why should anyone help me? Even my own partner does not understand. Just last week, he asked me to hold our daughter's ice-lolly because she did not want it and he was driving. I tried to explain it could damage my fingers and he looked at me as if I was stupid. I just hope the consultant I see will give me the answers I am looking for and give me a little hope.
Story posted 8-24-01
Updated submitted 6-10-02
Update posted 7-11-02
Story edited VH1: JTD 8-9-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Multiple Sclerosis (MS)
Voices of Scleroderma Volume 1
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.