Chrohns ,Fibromyalgi, Lupus SLE, Raynaud`s, Erythromelalgia ???

Hi All,I suffer from the above conditions. I have been suffering from burning fingertips which radiates up my arm causing my veins to bulge,( which worsens when trying to sleep ) I get these symptoms in my feet as well but not as bad. Unfortunately I have had these symptoms for over three years.Through my own research I am 99% sure it could be Erythromelalgia. Has anybody on this forum been diagnosed with this condition and if so could they perhaps recommend a consultant that is familiar with E.M . Could you advise if Prof Denton would be a good choice ? I already go to the London Lupus Centre but they haven't been able to come up with anything regarding E.M. Thanks in advance for your replies.

11 Replies

  • Hi. I have Raynauds and have been diagnosed with Erythromelalgia. I had worked it out for myself but it was then suggested to me by a neurologist when my feet obligingly flared in front of him. The rheumatologist I was seeing needed persuading but his colleague agreed the diagnosis and I was sent to the Lupus Clinic at Guy's where the diagnosis was immediately confirmed as my hands were flaring at the time. I was diagnosed but not helped and returned 'to the care of your GP', which means no care at all as they have never heard of it and don't seem bothered to find out. I wish I had been sent to Prof. Denton's clinic at the Royal Free where they do treat Erythromelalgia and if you can get referred there it would probably be your best bet.

  • Thanks Nelb for the info. I will look into seeing if it is possible to be referred to the Royal Free.Is your Erythromelalgia under control. Sometimes I find the pain intolerable, but find it strange that many Rheumatoligists don't seem to even know that this condition exists. My Lupus consultant seems to put it down to Raynaud's but I disagree. Hopefully I might be getting closer to finding out what these symptoms are, it's only my own research that I came across Erythromelalgia. So would be good to get a diagnosis so that I know what I have to deal with.

  • Hi there I also have raynauds, fibromyalgia and erythmyalgia I got diagnosed at the royal free last month and they suggested a number of medications that I could try which the first one they wanted me to try was gabapentin which is also good for the fibromyalgia so I'm giving it a go I'm on my 3rd week an I haven't had one flare up so far so gd :-)

  • Hi Angela,

    Thanks for info. Pleased to hear that Gabapentin is working and things are improving for you. If you don't mind me asking, who did you see at the Royal Free ? Regarding Gabapentin I have been taking this drug for a number of years for Fibromyalgia. I do think our bodies get tolerant to medications if used for a considerable time. So perhaps it's time for a medication review. Was you referred by your G.P to the Royal Free ? Sorry to be asking so many questions but have had these symptoms of burning etc for nearly four years. I was beginning to think no one believed what I was saying so am pleased to put a name to these symptoms at last. Hopefully on the way towards getting a diagnosis. Take Care x

  • Hi sorry taken me so long to reply, I've been with the royal free for 13 years because my mum has lots of problems for which she has has been having treatment for 4 times a year since I was a child they referred me straight away I can't remember the person I saw but it was someone under professor Denton, I do keep in contact with the rumatology nurse called Louise Parker at the royal free she very helpful with advice x x

  • Hi Angela,

    Good to hear from you. I managed to see Dr Ong at the Royal free last Friday. He seemed to think that it was E.M. and also Raynaud's , I was told two years ago that it was Raynaud's but I always thought it was more than that condition. He wants to do a number of tests and also mentioned Iloprost Infusion. I have had this before which didn't help at all, he seemed to think that I probably didn't have it for the correct number of days. He prescribed Fluoxetine 20mg. Not to sure if it is going to work, I already take medication for Lupus etc and have been trying to taper down. Don't think perhaps that's going to happen at the moment. What I have managed to read about E.M. I seem to think there is no one treatment and it is trial and error. It's a horrible disease and sometimes the pain is agony, although my hands are affected more so than my feet. Does your pain radiate to your arms and legs ? Not sure how long I have to wait for tests but can't wait to see what shows up!!!

    Thank for getting back to me.

    Take Care,

    Maureen x

  • Hi ya that's gd that uve seen someone at the royal free hopefully ul get some proper answers from these tests! My mum has had that lloprost infusion for over ten years now she wouldn't be without it. Fluoxetine is gd u might feel bit of the planet for a week or so but once it's in ya body they say 2weeks an it should start working I'm also on duloxitine which is very similar that is great for my fibromyalgia yeah u r right it's a matter of trial an error whats works for u really. I have only had the pains in my hands an feet it can give u pain in legs an arms my mum gets it. Hope all goes well :-) x

  • Thanks Angela, Have got an appointment for some of the tests this Wednesday. Another couple to have after that, unfortunately the person who does this is an umpire at Wimbledon, so have got to wait until that is finished. ( I think they must earn to much money ) I live in Cambridge so not sure what will happen when I have the Iloprost infusion. Not sure if I will need to get my own accommodation and just go in daily. Really don't mind as long as it helps with the symptoms!!! All the best. Maureen x

  • Hi All,

    I mentioned Erythromelaiga to my GP and just got a blank look. I have Raynauds and Fibromalagia too.

    Does anyone suffered from a flare up of Erythromelaiga affecting one or two fingers and the others on the same hand being freezing?:(

  • Hello there u can just get the pain in one or two fingers this happens to my brother not a nice feeling at all I've got it as we'll I've been on gabapentin tabs for 3/4 weeks now an touch wood I haven't had a bad flair up since. Ur doctor sounds as though he or she doesn't know much about this disease cracks me up an they call themselves doctorsx

  • Hello Panda,

    Sorry to hear that you diden`t get much joy with your GP. Just a thought but perhaps if you downloaded an article written by J.S Cohen and took it to your GP it might give her an insight to this condition.Regarding your question, yes I can have flare ups of of both Raynauds and Erythromelalgia, but on diffrant hands !! Have you mentioned to your GP that you would like a referral to The Royal Free London as my understanding is that they are very knowledgeable with both Raynaud`s and Erythromalalgia ?Take Care.

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