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Scleroderma & Raynaud's UK (SRUK)

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Raynauds

xshazx66 profile image
6 Replies

Hello to everyone, just found this wonderful site, I was diagnosed with Raynauds about 4-5 years ago and being only 46 at the time like many others I didn't take it too serious, since that diagnosis (not sure if it's all related or not) I have also been diagnosed with fibromyalgia, chronic fatigue and depression, hoping to learn some new coping strategies, tips etc, love and hugs to all xx

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xshazx66
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zenabb profile image
zenabb

I recognise the symptom though I don't have fibromyalgia. But one thing I have learned from long experience (I am 86) is that they come and go in cycles and are not constant.

xshazx66 profile image
xshazx66 in reply to zenabb

This is very true, I hope I reach 86!!there is nothing constant about this horrid disease, you just have to live with the pain hugs and love to you xx

I got Raynaud's four year's ago then rheumatoid arthritis and now fibro and I know a few that followed the same pattern

xshazx66 profile image
xshazx66

yeah they all seem to go hand in hand, although I was told 'mild lupus' and hoping it stays that way, I actually dread winter I know I will lose the use of fingers/toes, don't think blood tests have shown any rheumatoid yet, but 27 and 26yr old daughters have thyroid probs and older one has rheumatism in hip already, lovely genes being passed down Not

ilovedancing profile image
ilovedancing

I have had Raynauds since my teens and didn't take it too seriously. In fact people found it funny that my fingers looked like wax when I had an attack. I just lived with it and it didn't affect me too much. Then, 2 years ago, at the age of 58 . I was diagnosed with scleroderma and shortly after that with essential thrombocythemia. It seems once you get one disease others develop too. I have had an under active thyroid for 20 years which I think also could be related. It is well controlled with thyroxine and doesn't cause me any problems. The worst thing for me is how the scleroderma has affected my feet. They are so painful sometimes I can hardly walk more than 5 minutes. O work outside part of the time and am dreading winter as the raynauds affects my feet as well as my fingers. I just get really well wrapped up with lots of layers and ugg boots. I refuse to let the disease beat me but it is now affecting my lungs. I just ry not to think of what part of my body it will attack next.

cleoshome profile image
cleoshome

It is true you have to live with the pain, although symptoms can be managed. If your diseases do not go further you are very lucky. I hope so. I have had mine for 8 years, i have found stress is a trigger for flare ups. Low tolerance to stress increases anxiety. Find ways to destress, whether it is a book, your animals anything. Depression is always part of it, or so the doctors claim to an extent, try to find things you do find joy in. I was given medicine for the anxiety and different medicine for depression it does help. See if there is a local chapter close to you for fibromyalgia , or access the scleroderma website and they can be very informative on the phone as well , so you have a good support group with others who have it, and they too can talk about how they have to cope. I wish you well. Michelle

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