Hi! My name is Sheri, and I have CREST.

I am thirty-eight years old, and a wife and mother of two. I have been very healthy all of my life, then in the summer of 1997 I started getting arthritis-like pain in my joints. I thought it was because of the Atkin's Diet I was on, so I went off the diet, and the pain went away.

Then in the winter of 1997, my fingers and toes started turning white and numb in response to the cold weather. I thought it was just some weird virus or something, so I did not think too much of it.

When winter of '98 came, and the white fingers and toes returned! Something is not right here!

So I went to my OB/GYN and told him about this. He said it sounded like Raynaud's. He ran an arthritis panel, and the anti-centromere pattern showed up. It said,"Anti-centromere antibodies detected, characteristic of the CREST, a sub-set of Scleroderma. Prognosis for such patients is relatively good."

I had never heard of CREST, or Scleroderma. When I saw the prognosis, I thought, well, it isn't the end of the world, I guess it is something I will have to deal with. My doctor sent me to a rheumatologist. My rheumatologist ran all the tests again. He called me a week later, and said that I have the anti-centromere pattern, which "gets his attention", and only one symptom. So at this point, I am only at risk for CREST.

Okay, I can deal with this. Well, then I got on the Internet and read stories about people with CREST, and how they are having pulmonary hypertension, and they are in and out of the hospital, and all this stuff. I was really getting scared! I was looking for anything that told me I have a good, or very good prognosis (as opposed to Diffuse Scleroderma.) I found a few articles that made me feel better, but of course there is no guarantee.

But the stories of all the problems some people with CREST are facing were frightening!

I called my doctor, panicked! He told me that I may never get any worse than I am right now...or I may...but that most of his CREST patients do fine.

I said to him, "Just answer me this, am I going to live to be an old lady?" He kind of laughed and said, "Yes, you're going to live to be an old lady."

Whew! That made me feel a lot better. Okay, I can deal with this now. It is almost winter of '99 now, and I am starting to have swallowing difficulty, and acid indigestion—there's my second symptom which gives me an official diagnosis.

I take Plendil for circulation for the Raynaud's. I am now on Prevacid for the heartburn. They both work great. I have no skin hardening at all.

I believe I have Fibromyalgia because I am always tired and achy. I get depressed and was taking Elavil for a few years, but stopped it because I was feeling groggy and in a fog during the day, even when I took a tiny dose.

I do Tai-Bo for exercise, and it really helps me with the depression and is great for circulation and keeping fit (my depression is not severe).

I am going back in for my yearly check-up this month. He'll want to do tests on my lungs, heart and kidneys, just to see how they are. I do not have shortness of breath or anything like that...yet. Every now and then I get a little panicky about this. I mean, I have two young children, I do not want to be sick, let alone die!

Then I feel better knowing it's only CREST, and not Diffuse. But then I get scared when I read some of these CREST stories!

I have a very deep religious faith. I know God will never give me more than I can handle, and he'll allow me to raise my kids, and even help with my grandkids someday. So I try to find peace and comfort in knowing that I am truly in His hands, and whatever comes my way, He will be there to help me through it.

~Update 01-09-05~

I am now forty-three years old and have remained stable since my previous entry. I do have a problem with fibromyalgia and joint pain, especially in the winter months. In the summer, I seem to be fine, almost like there is nothing at all wrong with me. I pretty much forget I have an illness until around December when winter starts to set in. I live in Southern California, which is the perfect place to live.

The only difference I have noticed, is that during the winter of 2003, I started having problems with pleurisy. My left lung seems to get inflamed easily with cold, wet weather or stress. Stress, I noticed, is a huge trigger for my symptoms.

My thirty-nine year old brother had a major heart attack last year. He survived, but the stress of it made me so sick that it took me six full months to recover. I was on the verge of pneumonia, which is when the pleurisy started, as well as a lot of widespread pain in my joints and muscles, and such a weakness in my soul.

There were times I thought that this was it. That the CREST would take over and just spiral me down. But I did recover and am doing fine now. I hope my symptoms never get worse, although I do worry about the pleurisy.

I found a new rheumatologist, at Loma Linda Medical Center here in southern California. He is cutting edge. But I have not been to him yet because I have been so stable; I think now I should call for an appointment just to be checked. I did not care for the one I was going to, so I have not been checked in a few years.

I am tired most of the time. This is something that I find very hard to deal with because there is so much I want to do and I am always fatigued. I have noticed that when I exercise (not too strenuously), I feel much better. I also have to watch what I eat. No spicy or acidic foods or alcohol.

I just continue to plug along with this and am so thankful, because I could be a lot worse. I welcome any e mails from anyone out there. Take Care.

~ Update 03-26-08 ~

I just wanted to update everyone and say that I am still doing just fine. I remain pretty much the same as I have since first diagnosed eleven years ago..boy does time fly!

I am now forty-six years old and my kids are in high school and college. I lead a very normal life. The symptoms I continue to deal with are: Raynaud's, red spots on my face, acid reflux, fibromyalgia. I have arthritis in my toe joints and it is starting in my hands.

This seems to be progressing as time goes on. But so far I still have no internal involvement and my lungs are doing fine. I recently read somewhere that in CREST, the internal organs are usually spared...this is great news! I believe that I have a mild form of the illness and hopefully it'll never get much worse.

I just keep strong in faith....with God I can overcome anything! I welcome your e mails. Bless you all.