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Sandie: CREST Scleroderma

I was terrified while waiting for my first appointment.

I consider myself very lucky to have received my CREST diagnosis at an early stage. I had Raynaud's for a few years but no diagnosis of CREST.

I went to my family physician for a physical about four years ago. At that time I was having a great deal of difficulty with a cholecystectomy (gallbladder surgery). I had managed to get a staph infection and had repeat surgery (at that time I did not know I would be having yet a third surgery before the year was out.)

Near the end of my physical, my physician asked if I had anything else bothering me. I replied that although it did not bother me, I had a dry and tight patch of skin on the index finger of my right hand. After he examined it, he asked me how long I had noticed the red spots near my fingertips. I told him the truth, that I had never noticed it.

He then did a more thorough check of my skin and noticed a red rash at the nape of my neck. He told me he thought I had CREST and went to his office to get some more information on it.

Everything added up to CREST. Small things when put together seemed to make the diagnosis positive. My family physician then referred me to a specialist, a rheumatologist.

I was terrified while waiting for my first appointment. Unfortunately, I happened to watch a television movie with Dana Delaney called "For Hope" and she played someone with scleroderma who died within a few years of diagnosis. Talk about scaring me to death!

My rheumatologist laid to rest a lot of my fears since I have been lucky enough to have a mild case of CREST so far. The worst of it is the Raynaud's. Hardly a day goes by that I do not lose circulation in either my hands or feet.

I am very sensitive to the cold; I can no longer spend more than a few seconds looking through my freezer. When the symptoms are really severe my husband has to check the water temperature before I bathe or do dishes to be sure I will not scald myself because I have a hard time judging the heat of the water.

My fingers "lock up" on me constantly when I try to open jars or even with something simple like writing a letter. Thankfully, I have yet to have problems with typing.

I only see my rheumatologist on a bi-annual basis at this time. I take daily medications for my Raynaud's and also for my problems with swallowing and digestion. I have a yearly exam to detect any changes with my lungs.

Just recently I saw an orthopedic surgeon because of extreme pain in my right knee. The surgeon was stunned to see that I had a lot of arthritis enveloping the knee and a severe loss of cartilage. I will more than likely be having a knee replacement in the next few months.

I see the rheumatologist next week and will bring the x-rays along. I am not sure if there is calcinosis present, but it would not surprise me at all. I unfortunately live in the northeast which is famous for extremely cold temperatures. I rarely venture out during the winter months.

We plan to move down south within the next few weeks. When the opportunity presented itself in the form of my husband transferring in his job, we grabbed it. I would like to know how others are coping with their CREST syndrome.

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