Home Forums Personal History and Progress Threads Very healthy until Scleroderma at 63

This topic contains 1 reply, has 1 voice, and was last updated by  gbaker 4 years, 11 months ago.

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  • #306971
    gbaker
    Participant

    One Aussie winter morning 3 years ago I noticed my fingers were deathly white. Just coulden’t warm them. After I got to work and put them under the hot water they were back to normal. As the warmer weather appeared so did the white fingers – until the next winter….. This has gone on each winter but last winter the white fingers didn’t go back to normal. It was September 2011. I noticed the whiteness starting in my feet as well.

    I thought I’d better go to my GP who did some tests and sent me off to a rheumatologist. And there began my relationship with CREST SD and severe Reynauds disease.

    Within the first 4 months of diagnosis my hands swelled and my joints stiffened. Getting out of bed was difficult due to the stiffness in the ankles and legs. The flexibility I had in all joints was slowly disappearing. Weak wrists and ankles. Cant open cans anymore, carry grocery bags or walk uphill without pain. The Reynauds is relentless – never leaving me alone even in warm weather. The Doc gave me some blood pressure tabs to help the circulation but this only made my feet and ankles swell. I took myself off this med just 3 weeks later. I have lost 7 kgs in weight and muscle tone. I still suffer from the Reynauds.

    I learned from the Forum that the condition in my feet is called Erythromelalgia. The padding on the soles has gone making it difficult to walk without some pain. I went to Podiatrists who sold me expensive shoes and told me to do leg exercises. Didn’t help the sore feet.

    I have seen a nutritionist who has put me on VitD drops and selenuim drops plus some other supplements to help with pain and inflammation. I intend to start AP in Oct 12. The Doc who I will see advised a diet free of wheat/dairy/sugar. Within 1 week of this diet I noticed less stiffness in my feet and (maybe) less swelling in my hands. Even walking uphill or using stairs seems easier. I feel a little like my old self since the diagnosis.

    Now I await to see the Doc and discuss AP –

    #364871
    gbaker
    Participant

    Been awhile since I last wrote –
    I have been doing the AP protocol now since 21 Oct 2012. I flew to Melbourne and saw the GP and the Natropath. Both women were great and full of information although I came away with information overload.

    It was discovered in Melbourne that I cant take minocin or doxy! I was prescribed Ceclor (375mg), Rhulide(150mg) and Klacid(250mg). I take a quarter tab of Ceclor and Rhulide on Monday morning and a quarter tab of the Klacid on Thursday evening. Is it helping?

    I feel good within myself: Am still working at my job: Am not in any pain nor was I before I began AP.

    I have noticed that my hands are still sore( hurts if I bump fingers or thumbs) and still tight….and no change in my poor little feet (still hurts to walk barefooted or for long distances even with shoes and insoles).

    The phone session with the Melb GP in December just went over how I was doing. I told her about the hands and she told me to start taking the Funglin. Apparently it helps with herxing. The GP thought my sore hands may be a reaction to the AP.
    I would have to say that not much has changes except I feel good.

    I want to continue the AP as I believe that it will kick in – when…. I cant say! See what happens in April when I fly back to Melb to see the GP and naturopath.

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