Hi, this is my 1st post in this community, I'm at my wits end and wondered if anyone has any advice.
I have red feet and hands which itch like crazy..... I was on Amitriptyline for another condition and the itching etc stopped...... I stopped again recently and it is all back again. Instead about this community and Erythromelalgiaand wondered if this is what it is, but Inam quite ignoring to nit all and trying to collate information.
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There is a support group called Livingwitherythromelilgia. Lots of info there. Good luck.
Thank you, I'm sorry taking do long to reply, my app is playing up and won't let me do anything. X
Did you get my message, I think I put it in the wrong place.
Did you get my message?
Yes if it was about the support group xx
Hi Summerloving
I have Erythromelagia or ‘burning feet syndrome’ secondary to Vasculitis. Mine doesn’t itch but that could be just me🤗. It sounds like you need a neurologist and dermatologist. If I had to have one I would def say a neurologist. EM is very rare, if it is EM, so patients can spend a lot of time years being bundled round the medical profession. To cut that short if possible the best I can do is share the names of some consultants. The National Hosp of Neurology and Neurosurgery is the best by far. I saw Dr Michael Lunn. He regards Dr Julian Blake as the best neurophysiologist also at NHNN. You will need to check if it is primary or secondary and Prof David Bennet at the John Radcliffe Hosp in Oxford has NHS funding to do that. Amitriptylene was the best drug for neuropathic pain in a mega-study across the world. It also has the benefit of being taken at night so you can be awake the following day. Some drugs have a zombie-like result. If you have Vasculitis, imho Prof David Jayne at Addenbrooke’s is brilliant. All these guys are specialists in their field. Good luck
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