I have Rarnauds and am worrying it mi... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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I have Rarnauds and am worrying it might be the secondary type, Doctor doesn't seem to be so concerned.

glidewell profile image
7 Replies

After the cold snap just gone I woke up one morning unable to move my fingers or hands with pains extending along both forearms- went on all day then relaxed by end of day- since then I have woken with painful hands/fingers and problems using them properly.. will the swelling go down? Should I be worried? Is it just a matter of waiting?

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glidewell profile image
glidewell
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7 Replies

ooo glidewell that doesnt sound very pleasant. Do you get discolouration in your fingers ? Mine go blue and white - union jack fingers ;)

Have you checked out the raynauds and scleroderma associations website raynauds.org.uk as there is some great info on there which may help with some of your questions, as well as some pics which you can compare. I would also like to suggest to you that you order some of the information leaflets from the association and take them into your Dr and medical apoointments, as sometimes this diagnosis can be underestimated if not fully informed ! I was diagnosed with scleroderma and raynauds 16 years ago. Once my body responded to the medication (there is no cure), you can learn to live with the symptoms, day at a time I go with my eskimo outfit !

I hope this helps you and that you have some layers on keeping warm, Living the dream :) x

glidewell profile image
glidewell

Oh wow thanks- very helpful, good idea taking info to 'inform' my doctor! Yes my hand do that whole white, blue, red thing but this time that has not happened so much, I just seem to have very swollen hands and what feels like joint pain.. Website is very useful and informative. I also have some strange dry indented skin/dry patches that have appeared along one finger which is a new thing, I just want to know if I need to go back to doctor or if it will settle as the weather warms up...

Thanks for help!

living-the-dream-ssc-ray profile image
living-the-dream-ssc-ray in reply to glidewell

Hiya - get back to your Dr with those information leaflets !

Do you have shiny tight skin ? I hope your answer is no, as these are signs of scleroderma and although scleroderma does not carry the nightmare sentence it used to, it is certainly no walk in the park !

I am glad the info from the Assocation helped - they really are amazing there and so supportive. You can order some info leaflets to take into your Drs from the Association - I did this for my local medics and they were really grateful for the info ! As well as you can become a member of the Association ? it is a charity working relentlessly for a cure to the raynauds and scleroderma diagnosis, amongst other wonderful things they do !

In the meantime I would reccomend you keep a diary of your episodes, including waht you weere doing/ wearing / eating etc. So that you can take it with you to the Dr and make an informed choice if medication is necessary at this stage ! Good luck - keep us updated how you get on ;) x

glidewell profile image
glidewell

Thanks, I will report back!

glidewell profile image
glidewell in reply to glidewell

Hi there, just an update on the latest regarding my condition. Had what felt like twenty vats of blood taken to test for lots of things. Seen doctor today (got a more helpful, understanding one!) and he said blood shows rheumatoid factor is 'High' whatever that means, also I have a boarderline disfunctional Thyaroid (didn't say if over or under active) and he said he was somewhat concerned about my iron levels or lack of, saying that they were 'worryingly low'. So next is some tests at the hospital for Rheumatoid Arthritis... I am on strong Feraglobin to try and sort the iron out, don't know if the thyroid is connected but probably is. And finally the Doctor also said I had to cut the ring off my finger that was slowly stopping off blood supply (!) due to swollen-ness... so there we have it! For now...

Thanks again for all your sign-posting and support.

Sophie.

glidewell profile image
glidewell in reply to glidewell

PS Good idea about diary- I must do this, keep forgetting!

:)

chockers profile image
chockers

Both the same . primary it's comes on its own secondry comes with something else . but the Raynands is the same . thinks thats right

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