Sore hands

[ush1401]

Hi, I was wondering if anyone can shed some light on this problem. My fingers and toes are giving me alot of trouble. They feel very hot to touch and hurt, it's like the blood inside pumping into those areas is burning. The rest of my hand can be normal temperature but those particular areas are very sore. There is no skin breakage or sores just go very red in the areas and can last a few days continuously. I have spoke to hosp and they are not sure what is is either. Not raynauds or vasculitis.

[Hidden]

Sounds very like my hands. Could be Erythromelagia (opposite extreme to Raynaud’s but they can co-exist). Mine is a mix of both. sruk.co.uk/scleroderma/eryt...

[ush1401 in reply to Hidden]

Omg thank you very much for letting me know . I have suffered for a few years but nobody has mentioned this to me. I will speak to gp who is also a dermatologist. If you don't mind me asking how do you manage yours?

[Hidden in reply to ush1401]

You’re most welcome. Mine is secondary to Overlap CTD. Although I’ve been aware of it for some years now as an entity, it was only properly confirmed in writing a year ago by two professors - one a dermatologist, the other a professor of vascular medicine. Initially I think it was misdiagnosed as RA but the burning on my soles was one of my very first symptoms. I used to get up each morning and hobble on burning coals to the bathroom daily for a while and then it progressed to full on inflammatory arthritis for a while.

For years I was unaware that my soles were bright red because I never looked.! So it was assumed to be small fibre neuropathy - which EM can be a cutaneous manifestation of - same as Raynaud’s.

However since being diagnosed with overlap which includes scleroderma - and having tried all the Raynaud’s medications - my rheumatolgist suggested that I try Iloprost infusions. They are not for the feint hearted but they have been pretty life changing for me - and for my EM as much as for my Raynaud’s. At the Royal Free in London this is an acknowledged treatment for Erythromelagia.

After each 3 day Iloprost infusion I’ve found that my Raynaud’s and EM have faded to manageable. I still have pain when I type from chilblains and some kind of small vessels Vasculitis in my fingertips when my hands go from hot to cold or when it’s humid or freezing outside. But I get 3 monthly infusions and the pain only starts to return after a couple of months. Bearing in mind that I have features and antibody of scleroderma I think it’s probablyquite a good deterrent for cardiovascular problems too.

Topically I use a menthol cream called Dermacool. For me personally it’s the best and actually the only form of topical cream that gives me some relief during flares.

Just be aware that not that many doctors have heard of EM. My GP corrected me because she thought I was mispronouncing Fibromyalgia when I suggested I may have this to her in the summer of last year. I was having awful sweats and flares in my face and she hadn’t a clue what it was. Lots of doctors have looked weirdly at me when I’ve mentioned it so sometimes I’ve just called it Raynaud’s because it is of the same vascular family. I asked my rheumatologist to please add it to the diagnostic list so that my doctors can learn more and she has.

But now the underlying cause of my inflammatory vascular disease is being addressed quite effectively I’m actually really pleased with this treatment protocol - plus Mycophenolate for the systemic disease.

Anyway I hope this helps. 😉

[ush1401 in reply to Hidden]

Thank you very much. I will definitely seek for help now. I think it has gone on too long now. X

[CecilyParsley]

Hi, I get this badly. My fingers when pressed on my partners hands almost burn him. The tips of my fingers glow bright red as are my feet. I struggle to hold things and hobble a lot. I had nerve conduction tests which proved nothing. Therefore my condition persists and I have no answers. It is very uncomfortable at best and debilitating at worst. I have another new Rheumatologist who I have not met but who seems interested and open to helping me. I hope that you get some answers xx

[ush1401 in reply to CecilyParsley]

Thank you for replying CecilyParsley I hope you get the right help. I have spoken to gp today but need to contact rheumatology. Let's see where I get with this.

[CecilyParsley in reply to ush1401]

Good luck xx