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Fionna: Undiagnosed Scleroderma/Raynaud's

I usually wake up with very swollen fingers and 'pins and needles' so bad I cannot move my arms.

Pink Flowers for Fionna by Sherrill Knaggs, ISN Artist My problems began in 1999, after a particularly stressful twelve months, at age thirty-six. I had joint pain in my fingers and had a blood test done. I was told that my anti-nuclear antibodies test (ANA) was positive (1:160) and they thought I had lupus. I had never heard of this disease before. I was tested again a few weeks later and it was normal.

A few months later I started experiencing numbness in my arms and legs and became extremely cold intolerant. One day I noticed that it felt like blood was rushing in and out of my hands. Eventually it got so bad that I had it checked out and I was diagnosed with Raynaud's. I was terrified that I would have a car accident or something although I never did. It used to really scare me when it happened.

About a year later I noticed that my hands were starting to change. The skin had thickened quite noticeably on my right index finger and my other fingers are like putty in my hands. If you pinch the skin between your fingers and then let it go, the skin will stay there for quite some time without springing back into shape. It is really weird. My fingers have also changed shape and are much fatter than they were. My rings no longer fit properly. I usually wake up with very swollen fingers and 'pins and needles' so bad I cannot move my arms. My arms get sore when I blow dry my hair or raise them above my head for any reason and my hands go numb doing simple things like putting on my makeup or using a knife and fork.

I have been so tired since this all began and have had numerous tests done for various problems that have all come back okay. It is very frustrating. My current general practitioner believes that I have scleroderma although she does not know what type. I have been to rheumatologists but not for a while as unless you quite obviously have something they can see or you have the appropriate antibodies, there is nothing wrong with you in their opinion.

Over the last few months I have been getting heartburn which I have never had in my life and at first I thought I must be having a heart attack. It was quite painful. I also suffer from reflux and have trouble brushing my teeth without vomiting because of this. I get joint pain in various joints and I am getting more and more stiff in the mornings. I know there is something major wrong with me, but unless the blood tests reveal all, it will be a long, long road to a diagnosis. The only constant has been my last four or five ANA tests have all been positive in a nucleolar pattern with a titer of 1:160. There are no other antibodies showing in my system.

I am not really sure where to go from here but I am very frustrated by all of this and feel that I should be getting treatment now before it gets worse.

To Contact the Author

Email: [email protected]
Story posted 04-29-04 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Anti-nuclear Antibodies test (ANA)
Difficult Diagnosis
What is Scleroderma? PDF Brochure

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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