I am thirty-six years old and I have just been diagnosed with CREST syndrome with Limited scleroderma. I was shocked at first but relieved that I was not imagining how I felt and that I could put all of my symptoms in their place under one label.
For many years I have had swelling in my fingers and feet, worse in the morning (little fat fingers), which I would call fluid retention as I did not know what it was. I have had joint pain in my fingers and wrists. This got worse as the years went on. I also had tingling in my fingers and they were often numb.
In 2000 I decided that there must be something wrong with me and went to see the doctor. I was given blood tests, thyroid check, hand X-rays etc. The only thing found was inflammation. Because my other symptoms were fatigue and exhaustion, and the fact that the doctor could not find anything else wrong with me, she said that I was depressed and stressed. Because she was a doctor and I was not, I started trying to fix this. I did not think I was depressed and I was not getting better but I did not wish to go back, so I just battled on the best that I could.
Early in 2006, I was in even more pain especially in my hands and wrists. I went to see another doctor and was told that I had carpal tunnel syndrome in both hands. I was then sent to a surgeon. He said that from my symptoms that he thought that I had something else wrong with me besides the carpal tunnel. He did a blood work up, but this showed the same: just inflammation. He operated anyway. I had both hands done at once and looked forward to being pain free. Ha ha. It did help to relieve the fuzzy fingers but I still had fat fingers and aching joints, fatigue, and aching wrists and fingers.
In February 2007, I had another blood test done and this showed CREST syndrome. I was referred on to see a rheumatologist and six weeks after the first blood test I had another to confirm the diagnosis. The first blood test, my ANA was 626 and the second one, just six weeks later, was over 2200. I was told that it was CREST syndrome with limited scleroderma.
I am glad that I researched this and read peoples' letters before I saw the rheumatologist as with knowledge comes great power.
In the doctors office I was very nervous and made the unthinkable mistake of crying. He looked shocked and threw me a box of tissues and told me I needed to go back to my regular doctor as I am depressed. This made me extremely mad. He was not willing to listen to my symptoms of fatigue, tiredness, exhaustion and joint pain.You see he could not see these symptoms and did not believe that this had to do with my scleroderma. Also when I said that looking back that I had had this developing for years he told me that it has just started as it usually shows up in the bloods around the same time. I also had to suggest that he give me an echo and lung test (and here I thought he was the expert).
If I was not stressed before I went in, I certainly was then. I am going to get referred on to see someone different. Hopefully, I will be luckier second time around.
It is frustrating and extremely difficult to get others to understand what we go through on a daily basis. I am happy to receive emails from people as I feel it is good to hear how others are feeling and how they deal with it. Here's to the future and not knowing what it holds for us all.
Email: [email protected]
Story edited 05-18-07 JTD
Story posted 06-11-07 SLE
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SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.