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!
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!
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
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