Scleroderma & Raynaud's UK (SRUK)


Any advice would be great my doctors are useless I have raunauds and past week I've noticed only when I'm on bed my hands and feet have been burning and throbbing I assumed it was my raunauds I've never had this type of pain before I assumed it was my raunauds as I my hands and feet are the main areas I suffer with he was clueless and said I may have a virus and gave me codeine I have notice the burning has stopped I don't know whether this is just a coincidence

11 Replies

You may need to be referred to a rheumatologist


My referral is taking for ever


It takes a while to see a rheumatologist but you need to be tested appropriately to know what you need to be done for you. If you don't hear soon ring the hospital and speak to the rheumatologist's secretary and ask (nicely) if there is a date for your appointment.


I may have to I'm counting down the days to summer I hate winter it make me so I'll tired and all I want to do it stay in bed and sleep and keep warm


No fun: took my drs & me quite a while to get our heads around those symptoms (like, years....)

My version of something very similar turned out to be simultaneous Raynauds & erythromelalgia secondary to systemic lupus

The best place for basic erythromelalgia info is under associated conditions on the raynauds & scleroderma association home website

The best source of more in depth info & management tips is the TEA (the erythromelalgia association):

The Erythromelalgia Association > Home

The Erythromelalgia Association (TEA) is an international, all volunteer, nonprofit organization that provides ... CONTACT

‎What is EM? - ‎Diagnosis - ‎Membership - ‎Research

Also on Facebook

July 1, 2013

TEA has a Facebook page, which you can follow to stay on the frontline of EM treatment and research and help raise awareness of our rare disorder. Click this link to "like" TEA's page


Or thanks I find this website more helpful than my doc all they want to do is Palm you off with tablets


You may need to see a Rheumatologist, however it is not uncommon for burning in Raynauds when your hands are reheating too fast.


I had Iloprost infusion last year as a last resort, I had put it off for 3 years due to the horror stories of the side effects I 'may' suffer. Nothing else helped and considering I have had Raynauds for 34years now you can imagine, I have tried a lot of meds. This treatment ,for me, is the best treatment I ever had! My only regret is that I waited so long to have it. I had nt realised just how much Raynauds had affected me and my lifestyle and the quality of my life. My family and freinds were amazed at the difference in me. The treatment its self was not pleasant, It invoved a short stay in hospital and I did have nausea ,headaches and some vommiting-kind of tummy bug symptoms but they were not debilitating. I showered each morning,got dressed, put my face on and sat out and walked around so I was nt too bad. The medical team were fantastic and I was closley monitored. It certainly was the wonder treatment for me and I will most definatley have it again when I need it. We are all different though,as, you know and we all have different tolerances but you wont know how you react if you dont go for it. we all tend to talk about our negative experiences and not so much the positives in our lives so feed back on here is probably more of the negatives. This is just my experience,I hope you end up making the right decision for you and wish you the best. :-)


Thanks for responding what does this treatment involve


i had an infusion each day for 6hrs .I had a 5 day stay in hospital.

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Sorry If I sound stupid what's an infusion


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