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Scleroderma & Raynaud's UK (SRUK)

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rheumatologist

sandycharlie profile image
6 Replies

hi all...I not been on here for a while.....been really busy with work and had a lot of trouble with my hands.....my appointment is finally here with the rheumatologist...I go on tues the 4th june....really hope I get told what is wrong, ..my doctor says I have raynauds and scleroderma, my hands are the worse they are sore swollen and feel really tight its like the skin is to small for my hands..haha sounds strange but its how it feels....I also have the tighting going to my wrist also now.....I do find a lot of things more difficult to do but I keep trying as I don't want this illness to beat me yet......I hope everyone is keeping warm and as healthy as poss....I am loving the warm weather we are having in the uk at the moment but its a pain having to mow the lawns now as the vibration from the lawn mower sets my hands off...but I keep going and hope it does not get worse....

I do find I don't lose feeling in my hands in fact I get the opposite I feel more sensitive to the touch...some days I find it very painful to touch things as to do some jobs

well lets hope I get some good results on Tuesday...just need to be told what is exactly wrong and get help....keep warm an healthy everyone...xx

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sandycharlie
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6 Replies
dordle profile image
dordle

Hi there, good luck for tomorrow, what hospital are you going to? Had the same problem with extra sensitivity in my 'chipolata' fingers, across the backs of my hands, wrists and up into my forearms. Couldn't peel an egg or take the top off the milk! Going onto mycophenylate tablets twice a day really helped. Hope you have a good day and not too much waiting around.

sandycharlie profile image
sandycharlie in reply todordle

hi...went to queens hospital burton-on-trent.....went really well was only there 2 hrs feel beta now got told wat is wrong I have raynauds and scleroderma..got have loads tests done an bk in 3 months for results..xx

Hiya !

I hope all goes well for you tomorrow also ....

Have you checked the raynauds and scleroderma website out on raynauds.org.uk ? there is some great relevant info on there!

Mycophenolate 2mg / day 5 years sorted me ! Im on year 16 now, no more immunosuppressants, just meds for the Raynauds. Look after your hands and fingers - Im so lucky that mine have not fully curled. I have a strict daily skincare routine which has also helped.

Let us know how you get on - we will be thinking of you :) x

newbe profile image
newbe

Hello there just wanted to wish you well for tomorrow I am sure they will be able to give you some help and getting a proper diagnosis is paramount. Remember you are not alone this is a wonderful supportive website all the best.

Springsong profile image
Springsong

Good luck today. Hoping you finally get some answers & better understanding. X

sandycharlie profile image
sandycharlie

thanks all...was a gr8 day...feel much better although bit scary with all the tests got to have...had bloods and chest x-ray done today..got go bk for heart echo and lung function and ct scan on chest...but feel beta knowing wat is wrong..xxx

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