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Susie L: Raynaud's (and Scleroderma, too?)

For years I have felt like an over-reacting fraud.

Red Pohutukawa Flowers by Sherrill Knaggs, ISN Artist I am twenty-five and have been suffering from very painful, cold hands with dry skin which cracks open and does not heal in winter. The cracks then deepen instead of healing, even though they start off as tiny slits in the skin. Then the cracks start to heal, but the minute the skin dries up again and I move a finger, the cracks re-open and the cycle continues.

This has been going on for several years. When I go out in the cold, even a slight breeze in summer is enough to make my hands turn white, then blue. When it is really cold, I have an intense stabbing pain in my fingers, akin to a row of knives being jabbed into my fingers. When my hands warm up indoors, they feel like they are burning and on fire and itch like there is no tomorrow. It is frustrating because when I am cold and my family tries to make me sit by the fire and warm up, I dread the burning feeling in my hands that I know the fire will provoke.

For years I have felt like an over-reacting fraud. If I knocked my hand on something, especially in winter when I had some of these cracks, the pain would be enough to make me cry out loud, even just banging my hand on the cupboard door.

I had heard of Raynaud's and knew there is often no treatment for it, and knew that it was common in girls my age, often with no ominous cause, so I never mentioned it to my doctor.

Then when I was seeing my doctor about something else, which I felt to be much more important (I haven't had a period in eighteen months), and showed him the green sore on one of my fingers, which were blue at the time, he was rather shocked that I had never mentioned it before.

He referred me to a rheumatologist and gave me antibiotics, as one of those painful cracks in my hand had become infected (again..but this was the first time I had shown a doctor and realized the significance of it).

Moreover, I have been suffering from severe constipation for years, and even triple doses of laxatives, and two types of laxatives combined together at that, would not always produce the desired results. Coupled with acid reflux which has bothered me for years, prompted the rheumatologist to immediately suspect scleroderma.

I was admitted to hospital immediately for an Iloprost infusion and IV antibiotics to help the infection heal. In order to try and obtain a diagnosis, the doctors ordered a whole host of tests and consulted the relevant specialists All of the blood tests, x rays, lung function tests etc., have been normal. I have been told that I "probably" have scleroderma in the early stages by one doctor, that it is unlikely by another, and that I almost certainly do have it by yet another. So what to think? I am waiting for an esophageal manometry in a few weeks' time which I believe will allow a more certain diagnosis either way.

The hardest part of this is the impact it is having on my family. I can deal with the "suspected diagnosis" most of the time; I keep myself busy and make sure I am getting on and doing the things I want to do in life as much as possible, but I hate the thought that one of the reasons I have been spurred to get on with things is the knowledge that in a few years, I may or may not be suffering even more from this disease.

My parents can only watch in disbelief as their daughter, a distance runner, can come back from a ten mile run in summer, then a few hours later wince in pain at having cold, white hands from poor circulation. It just doesn't add up. Nor does the severity of the constipation given the amount of fiber I eat, the liters of water I drink daily, and the amount of high intensity activity I do. Coupled with the fact I am otherwise extremely healthy and rarely catch colds or infections.

So now I wait, and wait for the doctors to agree, one way or another, whether I have scleroderma or just Raynaud's disease. Part of me would be relieved, as I would have a "label" or explanation for these troublesome symptoms which plague my daily life, but which make me sound like an oversensitive hypochondriac. On the other hand, the common sense part of me knows it would be better to just suffer from benign, idiopathic and isolated symptoms, and to accept that they just exist as part of my life, and not face a future of fear of a progressive systemic disease which by all accounts is so individual that doctors are unable to predict its progression.

Really, it partly seems like a mountain out of a molehill. However, when my GP, who is not prone to being over sympathetic, starts being very nice, caring and concerned, I question whether I am being too naive. Yet at the same time, I am overwhelmingly grateful that someone in a position of medical knowledge recognizes the discomfort caused by Raynaud's, and at least in this respect, I no longer feel like an oversensitive fraud.

To Contact the Author

Susie
Email: Withheld by Request
Story edited 06-18-07 JTD
Story posted 07-27-07 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin

LINKS
Bowel Involvement
Difficult Diagnosis
Digital Ulcers
Esophageal Involvement
Raynaud's
Raynaud's Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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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