Scleroderma & Raynaud's UK (SRUK)
6,779 members3,208 posts

Toes too!

I have been diagnosed with Systemic Sclerosis and all the rest of the CREST syndrome for 12 years now and my hands have been affected worse than anywhere. Due to ulceration I no longer have any full fingers or thumbs left and struggle with everyday life doing up buttons etc has been impossible for a long time.

Now to my horror I have developed an ulcer on my middle toe although up til now my feet have not been affected at all. Both of my second toes have lost all feeling and I have also developed a large shallow ulcer on the top of my foot making wearing any type of shoes impossible. I have had 4 ulcers on my ankles of both feet for 3 years which have to be bandaged so cant even get my Uggs on now!

I am housebound now so what on earth will I do when the bad weather comes?

3 Replies

Cosyfeet may have an answer to your shoe problem. They are on line.

Are you followed by a rheumatologist? You seem to need Iloprost.


Hi Zenabb Yes I have a consultant rheumatologist locally and also visit the Royal Free periodically

. I have iloprost twice yearly but have decided not to have any more as its doing nothing for me now. I will look on the Cosyfeet site though as I am getting desperate.

Many thanks for being so kind as to reply to my post

Stay warm and stay well!

Suzy xx


That was like reading my story... I sympathise with you. Diagnosed 18yrs ago, I've suffered the same with fingers and now affecting toes, as well as having bad ongoing ankle ulcers for last 4 years. I've been in flip flops/open toe shoes for weeks now due a painful big toe and always carry another pair in my bag as each pair eventually hurts some point after an hour due to various probs, eg. no padding on balls of feet and insoles unsuitable in flip flops, hard to keep on when feet are cold or the opposite, too tight as feet often swell up, Not been out today as gone a bit chilly and too sore to even wear socks to keep feet warm !!!! Tip..Try Skechers too, they are light comfy soft shoes (big on sizes so always get a size smaller)

I'm also suffering enormously at mo with stiff/sore joints in legs and arms made worse when sitting for ages but with limited/painful hand function and mobility then its sorta catch 22 !!! I worry for the future. I try, but so struggle, to live life as full as poss being a very young hearted, outgoing, fun loving 54yr old single gal. I've 4 grown up kids, just the youngest at home still who, bless, though good and understanding (fastens my shoe buckles, jewellery claps etc if going out) has his own life to get on with so will no doubt move out soon being 24yrs. I often cry when alone but smile and joke around people... My friends/family are understanding, they know and quietly make allowances, thank goodness, I don't want them depressing me with their sympathy, I rest when I have to but party when I can (painkillers help, but the occasional wine works wonders, ha)

So I put my face on each day (well, most days, just makes me feel better... and ye never know who may knock on yer door, lol) and I try to keep my chin up, at least I can still drive and am able to hear, see and speak... just wish I could get them fancy shoes on and had some nails to paint, lol !!

(Gosh, that was an essay, need to try get off this flippin chair now, ha ha ha) xx


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