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erythromelalgia (burning feet and toes)

Posted , 10 users are following.

doris90991
doris90991

Hi there.  I have just been diagnosed with erythromelalgia after a number of years with burning feet and toes. I also have osteo arthritis in feet.  My soles and toes turn red feel very hot and feel like they are burning.  This happens if I get warm through exercise or even if the air temperature goes up.  It is worse in the evening and when I go to bed, I have to keep my feet uncovered as I can't stand the sheets touching my toes.  I was diagnosed by a vascular consultant who has prescribed nebivolol that is a type of beta blocker to be taken at night.  Does anyone on here have experience of this condition?  Doctor said that finding something to help will be trial and error.  I have to wear open toe shoes as my toes burn if they are enclosed.  Fed Up.

1 like, 12 replies

12 Replies

  • asha03123
    asha03123 doris90991

    Posted

    Hi Doris, I get a feeling of pinching in my feet along with pain all the time. Seen hospital consultant, done many tests but no result yet.  
    • doris90991
      doris90991 asha03123

      Posted

      hi asha, thanks for replying.  I was diagnosed within 45 minutes of seeing vascular consultant in Dundee.  In fact he said it was erythromelalgia before he examined my feet, it must have been obvious to him from my description of the burning.  I hope you get some results soon.
  • jack61270
    jack61270 doris90991

    Posted

    I was prescribed colchicine (for gout) for my burning toes and feet.  My feet are numb now.  It did get rid of the burning although I still have it when I exercise (walking and running).  Am taking metanx and neurx-tf for foot shocks and tingling and numbness-helps with everything but numbness. 

     

    • doris90991
      doris90991 jack61270

      Posted

      Hi Jack thanks for replying.  I also have numbness and tingling with erythromelalgia.  I was diagnosed within 45 mins by vascular consultant in Dundee.  I am hoping that Nebivolol goes some way to removing this horrible feeling in feet as it is awful at night when I go to bed and cover my feet.  My feet have to stay out or I can't bear it.
  • timoty35974
    timoty35974 doris90991

    Posted

    Thanks for posting. Have you had any success with the beta blocker? My girlfriend experiences a similar phenomenon and has tried a whole bunch of different meds- but not that one!

    I'm also curious, have you identified an underlying cause of your symptoms?

    Thanks

    • doris90991
      doris90991 timoty35974

      Posted

      Hi timoty,  Unfortunately I had to stop the beta blocker after 1 week as I felt rather strange on it.  Within that week I didn't see any improvement.  I am now trying a topical gel that contains ibuprofen and levomenthol, it seems to help a bit.  I haven't identified a cause but I also have a burning tongue and think that there is a connection.  I was diagnosed as hypothyroid a few years ago and didn't have the burning before then so maybe there is a link to that as a lot of people who are hypothyroid have some very strange symptoms including this very thing.  I hope your girfriend can find some help.  Regards Dee
  • john22988
    john22988 doris90991

    Posted

    Doris, I feel for you; I have been living with burning feet for seven months. You are fortunate in finding a doctor that knows something about EM.  Here in Hilton Head area of US, 0 out of 6 (my doctors) have heard of it.  So, I am being treated for RSD or CRPS, and nothing helps. I suggest you go to the forum on "Living with Erythromelalgia" website.  And, you have my best wishes for success in managing it. The best news- a number of pharma companies are working on new pain blocker that is promising! I probably won't live to try it, but you should. 
    • doris90991
      doris90991 john22988

      Posted

      Hi John,  Thanks for replying to my comment.  I am sorry to hear that you too are putting up with this condition.  I also use a forum called Healthunlocked that has a few members with erythromelalgia.  Doctors really should be keeping up with this type of condition.  I have little faith in the medical profession and feel that I have to cure myself rather than rely on them.  I'm not sure what RSD is but I have heard of CRPS could you let me know what it is?  I was advised to try Nebivolol it is a betablocker and also to take an antidepressant called Duloxetine that apparently has a painkilling effect.  I have yet to start these medications as I would rather use a topical painkiller rather than medication that I have to swallow.  My GP tells me there is nothing available ( I don't believe her) as I have read about lidocaine patches. I intend to push her further on this at my next appointment.

      Regards Doris

  • john28542
    john28542 doris90991

    Posted

    have suffered with these symptons for some years now am glad to put a name to it.

    I find that that if I have spicy food for evening meal it is much worse on going to bed.

    From the previous replies it seems that one has to live with erythromelalgia as no medication as yet.

    • doris90991
      doris90991 john28542

      Posted

      Hi John,  I have started a new medication (Duloxetine) and have been taking it for 3 weeks now.  This drug is an anti depressant.  I am taking 20mg and that is a small dose.  I think there has been a slight improvement and anything is better than nothing.  I will see my GP next week and I'm assuming that she will increase the dose.  I have read that a dose of 60mg is recommended for this type of condition but I like to take new meds very slowly so I will gradually build up the dose.  I still keep my feet uncovered in bed.  I'm not sure if the Duloxetine is helping with the redness and pain but I don't seem to be quite so focussed on my feet.  I don't feel that for me food is a factor as I have this every night regardless of what I eat.  I will update again as I increase the dose of Duloxetine.  I know that we have to live with this condition as there is no 'cure' as such but there are many different drugs to try as I have learned for another forum called'Living with Erythromelalgia'.  Please have a look at this site as it is really great for ideas to try.  On their recommendation I bought a Chillow, I got it from the large shopping site, I don't know if I am allowed to name it on here but it begins with 'A'.  It is very helpful for cooling the feet and lower legs and allows me to fall asleep a bit quicker.   I hope this helps.  Dee
  • cz06509
    cz06509 doris90991

    Posted

    Hi. Do you continue with this? I think I may have this. What you describe above is exactly what I expereince. Can you describe any other sypmtoms? So weird. What type of physician did you see to get a diagnosis?window.post_1486850257903_4 = function(win,msg){

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