Dealing with raynauds

Hi

I was diagnosed with raynauds about 3 years ago but over the past year or so its been getting worse . This winter has been unbearable as I'm now getting excruciating pain in my feet and nipples, before it was just my hands.

I recently had my first appointment with rheumatology and they mentioned a few minor things but I've to wait a while on the main diagnosis, if there is one but I was told it isn't rheumatoid arthritis. I went for the appointment with the idea of getting an operation as my gp had mentioned it but i was rather disappointment to hear they no longer do it. I tried the medication last year and unfortunately it didn't work.

I've bought various different gloves, hand warmers base layer clothing etc. How do you all cope? Any advice would be great.

Also I'm feeling rather down about it all, about coping with this the rest of my life and the thought of what they might tell me at my next appointment.

Does anyone know of any support groups in scotland?

3 Replies

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  • The operation referred to is most probably a cervical sympathectomy. The reason it is no longer done is because of the poor results. However there is a newer operation called a digital sympathectomy where the operation is done locally on the fingers and this is more successful. There is another operation called a lumbar sympathectomy which is carried out to help the circulation to the feet and this is usually more successful so worth talking to your consultant. I assume that you are waiting for the results of an ANA (anti nuclear antibody) blood test to find out if you have an underlying condition?

    Anne

  • What do you mean wheen you say that medication was no use?

    There is no cure you have to keep taking the medicine, it dilates your blood vessels allowing your blood to reach your extremities better and keep you going.

  • Hi, I have Raynauds and Scleroderma and I live in Perthshire. For me it is all about not getting cold, I know that sounds simplistic but it is the core. I use to be the sort of person who went out in the snow with bare feet so getting Raynauds was an amazing shock to the system. I bought an extremely expensive Chrysalis coat (best coat ever), sheepskin gloves, snow boots,my sheep skin slippers are never off my feet, I wear Uggs at work all year round, scarves, hats you name it. I have a blanket on the sofa, electric blanket on my bed, lovely fuffly and totally unsexy bed wear, I just don't let myself get cold. When with friends they know to sit me by the fire or I get the radiator seat! What taught me a lesson was going for a Isloprost infusion, it was horrific (for me), so in order to never be sent for one again, I don't allow myself to get cold....ever! It takes a while to get use to defensive dressing but now it is second nature to me and I haven't been sent for an infusion for 5 years, nor do I take any medication for it (I am on tonnes for the Scleroderma). I had actually never heard of any operations? I may not be bad enough for it to have suggested to me. I don't know of any groups but if you ever need to chat then just give me a shout.

    Sam x

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