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Carol F: CREST Syndrome

I feel so alone right now and it would be nice to talk with someone who understands what I am going through.

Mandevillea for Carol by Ione Bridgman, ISN Artist For the last two years my hands and feet have been going numb. At first I really did not think much of it since I had had a three herniated disc cervical injury and thought it could have been from that. I told my doctor about the numbness and he did not say anything about it. The last two winters were really tough for me. I could not tolerate the cold. My hands and feet would go totally white, and I would shake all over.

One day I woke up and I could barely move. I never hurt so bad in my life! Walking even bothered me. I kept thinking to myself that I am only thirty-three years old, and that this is not something I can just blow off. For two weeks it was awful! The pain all over my body woke me up in the night. I decided to quit being stubborn and to see my family doctor. I told him about the pain I was in and I also told him about my hands and feet and how I could not tolerate the cold anymore. He decided to run some blood work.

I knew when I got a call at home from him that it was not good. He told me that my anti-nuclear antibodies (ANA) were extremely high and he wanted me to see a rheumatologist. So I was thinking that maybe I had a mild case of arthritis. Others told me that it was probably a mistake that the lab had made. I knew it was not a mistake because of the way I was feeling.

When I went to see this specialist, I was really nervous because there were three doctors examining me, asking a lot of questions, and talking about all different kinds of diseases it could be. Needless to say, I was scared!

Once again I was asked to have more blood tests. I got another phone call at home and was asked to come in the next morning to discuss my results. I was told that I had a very rare disease called CREST with scleroderma. I had no clue what was involved with this diagnosis, so I could not ask the right questions. They just told me I would be on Plaquenil for the rest of my life, and that I had to get blood work every three months.

I have done a lot of researching since last week and now I am really confused. I have found this web site to be the most helpful! I cannot elaborate enough about how afraid I am of not knowing what my future holds for me.

I feel so alone right now and it would be nice to talk with someone who understands what I am going through. I have so many questions to ask, and hope that someone out there can help me. Please feel free to email me. I look forward to meeting new friends!

~ Update 05-13-05 ~

It has now been a year since I was first diagnosed with CREST/Scleroderma. I must admit that I am more confused now than I was a year ago! Back when I was first diagnosed, I was not being honest with my doctor about what I was truly feeling at that time. I was afraid to admit to myself that I was having problems. But after the initial shock of it all, I finally got real with myself, and felt comfortable enough to talk with my doctor about what I was really going through.

I told him about how I felt like I had no energy, and about how my joints and muscles hurt a lot. I showed him my swollen hands and feet, and talked about how much pain I felt when I tried to even move my hands.

I was shocked at his response. The doctor told me that I was feeling bad because I spent too much time in the sun (which I had told him I had been in the house for a month) and that my joint and muscle pain was from lack of exercise. By the time I left his office, I was pretty upset. I could understand if I were overweight for him to make a comment like that, but actually I am under weight.

I am sure that most of you can relate to me when I talk about the pain, especially when the disease is active, and how exercise was the last thing on my mind. During those occasions, I am lucky to roll out of bed! Do not get me wrong, I was not expecting any pity, but just for him to acknowledge what I was feeling. I can see now why so many people have a hard time finding the right doctor!

I did find another doctor, but I still have a lot of unanswered questions. My latest health issue is that I am experiencing a lot of stomach pain, with some internal bleeding. I have lost ten pounds in the last two months, and I have had an upper and lower GI done with no answers. The doctors cannot find the problem.

It becomes frustrating at times for me, and that is when I have to look at others who are much worse off than I am and realize that it could be worse. The most important thing that has kept me going is knowing that I am not alone.

Being able to come to this site has been a positive experience for me. I thank all of you for sharing your stories, it has helped me cope with all my issues.

If anyone has any advice for me concerning the stomach/internal bleeding, I would love to hear from you! Please feel free to email me! Take care everyone!

To Contact the Author

Carol F.
New email address needed 09-26-06 SLE
Old Email Prefix: clfarley2003
Story posted 05-04-04 SLE
Story update edited 05-13-05 JTD
Story update posted 06-03-05 SLE

Story Artist: Ione Bridgman
Story Editor: Judith Devlin
CREST Syndrome
Difficult Diagnosis
Sclero Forums
Types of Scleroderma
What is Scleroderma? PDF Brochure

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!

Go to Carol Langenfeld: Diffuse Scleroderma

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