When I was fifteen or so, I noticed that my fingertips were starting to get very sore when I banged them on a table or wall. My first thought was that it would go away, no problem. I was only fifteen, indestructible, no need to bother the doctor with this.
As time went on it got unbearable. Someone had told me to stop biting my nails and it would go away. Okay, sounds reasonable. It was also at this time I noticed considerable changes in my hands in regard to color changes with the cold, either outside or even just cold water, so off to the family doctor I go and the journey of the testing and probing was just about to start.
When he looked at my hands and saw the scarring and tightening of the skin, he said, "No problem, we can burn them out or cut them out." This I did not want, so the first set of blood work and x-rays were done. Nothing really showed up so antibiotics were prescribed and let us wait and see, in a few weeks we would get the results.
I went back to the doctor with some relief, but not enough. During that time he did some reading or consulting with colleagues and decided he was going to send me to a surgeon to consult with me about my fingers. Also I had forgotten to mention I had considerable build-up of calcium in my left thumb.
The doctor decided to surgically remove the calcium but leave the fingers alone for now. This surgery was performed again about two years later and that was the last I saw of that doctor even though I still have build-up of calcium in my knees and elbows. So ended the (C) in Crest Syndrome and now on to (R) Raynaud's.
After a few years of visiting with my family doctor and complaining about fatigue, it was determined that I had a thyroid problem and medication would help this. Then in the winter of 1990, my Raynaud's had not only affected my hands but now my feet, where blood vessels would close and no blood was getting through. The pain was so intense that tears would come from my eyes when the attacks would hit. This was when I was introduced to my next specialist.
So finally I see a rheumatologist, who determined I had C.R.E.S.T. Syndrome. I remember saying, "What? Like toothpaste?" I had CREST or at least the CR of CREST. If I only had known what the future had in store for me with the E.S.T. coming!
I pretty much had the Raynaud's under ropes with the medication and creams and just dressing properly, besides it was only four months of the year that were inconvenient.
Well, around 1991 the heartburn started and I thought it must be something I was eating. I would just have plenty of TUMS on hand, that is all. And then it happened. I was sitting down to dinner with my wife and in-laws, enjoying a nice steak, when out of nowhere I started to choke and choke and choke until finally I just threw up. This got really bad over a short period of time and thus I was off to the next doctor, or should I say doctors and machines.
(I still have more parts to the story, which will be coming soon.)
(New email address needed.)
Story edited 7-17-03 SLE
ISN Senior Artist: Sherrill Knaggs
Difficulty Swallowing (Dysphagia)
Skin Tightening (Sclerodactyly)
Types of Scleroderma
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses.
We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: