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Helen P: CREST Scleroderma

I have discovered that there is an awful lot that is not known about CREST/scleroderma.

Hibiscus paintingI have CREST. I was diagnosed ten years ago when the symptoms kicked in with a vengeance following a very traumatic personal tragedy. I had had stomach acid problems and chilblains on fingers and toes from infancy. Raynaud's Phenomenon was formally diagnosed some time in the 1970s, but I cannot remember exactly when.

For years, I thought I was basically fit. I was sporty, did a lot of walking and so on, but I was fairly consistently prey to silly things, none of which was serious in itself, but had me beginning to think I was a hypochondriac. Then in 1993, someone I loved very much killed himself and my body went crazy for the next few months. I started oozing sticky calcium from a small hole in my elbow and then from one in my index finger (which has mildly disfigured the finger by fusing the first joint solid. It is no big deal and is, in fact, a source of jokes about how I can point around corners. The esophageal reflux went into overdrive. I began to think someone had poured car battery acid down my throat as it woke me up night after night. I also got the telangiectasias. My general practitioner (GP) suspected CREST and after running many tests, his diagnosis was confirmed.

There then ensued a variety of more-or-less frustrating encounters with rheumatologists who all found me very interesting, and showed me to their students, but who basically could do very little. I have regular endoscopies, which show that I have scarring from the numerous ulcers caused by the reflux, and am on medication for the reflux. That is about it in terms of treatment and medication.

I cannot pretend that CREST is debilitating, but it does impact on me in the following ways: I feel more-or-less permanently tired; my fingers and toes are very frequently either white and utterly numb or red, hot and swollen (there is little in between); my telangiectasias are slowly spreading on my cheeks, on my lips and the odd spots of it appearing elsewhere; most embarrassingly of all, I am mildly incontinent and this is the one aspect of this thing which I do not seem able to get the doctors to take seriously. The rheumatologist just smiled indulgently when I first mentioned it and moved on to another topic! I also have a sluggish digestive system which means that I have very frequent diarrhea (which does not help with the above!).

I had very early onset menopause, at thirty-seven years old, and do not know whether this is just a rotten coincidence or if it is connected to the CREST. My general practitioner's instinct is that it is connected. Cataracts were diagnosed a couple of years ago when I was forty-six. Like most people, I ignorantly thought cataracts only afflicted the very elderly. Again, these may or may not be linked to CREST. The silver lining here is that their removal has cured my lifelong short sightedness and colors look delicious!.

Very recently, I have had other signs of CREST (at least I think it is due to CREST), which I have to confess are worrying me slightly and which I should see my doctor about, but I suspect, like many other CREST sufferers, I am afraid of appearing to pester the medics with trivia. I gave up smoking six months ago, but am actually just now becoming more, not less, 'chesty' and breathless (CREST web sites refer to lung problems); I am also getting the occasional dizzy spell (and I read today on a CREST web site that this is a frequent symptom and amazingly I did not know this before); and an associated sensation in my lower back, a sort of nausea of the back (I know that sounds positively mad, but I do not know how else to describe it); I also am getting red, circular patches of thicker skin on my lower legs that my GP diagnosed a few weeks ago as psoriasis. And again for the first time, I read on a web site that CREST can cause thickening of skin on the lower limbs. Prior to this I only had the skin thickening around my fingers and toes.

I have just re-read all the above, and I am embarrassed about the 'me, me, me', but I decided to not delete and rewrite. I realize that it all looks a lot worse written down than it feels on a daily basis. It has become for me just a background noise and rarely causes serious interference.

I have discovered that there is an awful lot that is not known about CREST/scleroderma, like, for instance, how to classify it. I still do not know if I have limited scleroderma or diffuse scleroderma or neither. My doctor calls it CREST, but all the web sites agree that people disagree on terminology and classification!

To Contact the Author

Helen P.
Email: Withheld by request
Story posted 07-06-04 SLE

Story Artist: Ione Bridgman
Story Editor: Judith Devlin
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ISN Artist: Ione Bridgman

Ione BridgmanISN 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

Photo of JudithJudith 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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