medication for erythromelalgia

Hi all, I am new to this as I was only recently diagnosed with this condition. I was diagnosed by a vascular consultant in Dundee Scotland. He told me that I had to stop smoking and begin medication. He prescribed Nebivolol (beta blocker) and suggested that I change my antidepressant from Paroxetine to one called Duloxetine as this one has a pain killing effect in some people. Well I tried the Nebivolol for 1 week but felt a bit strange so stopped taking it. I have no wish to switch antidepressants as it is just too difficult to cope with the awful symptoms when I reduce my 20mg dose. I feel that it would be better for me if I had a topical medication as I don't really want to add any more systemic medication to my mix. Along with Paroxetine I also take Levothyroxine and HRT. I am using a painkilling gel containing Ibuprofen at the moment which is a bit if a help but dread bedtime as my feet really burn then and it drives me crazy. Can anyone suggest something to numb my toes at night so that I can get to sleep. Many thanks

4 Replies

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  • Hi doris59. I have never found any medication that helps with Erythromelalgia. What I find the most use is to use a fan during the night with my feet uncovered. I have a ceiling fan which works quite well, but have just ordered a bed fan that blows under a sheet on your feet. I have got so bad that now the only relief I get in the daytime never mind in the night is to sit with my feet on ice packs wrapped in a towel. Are you a member of the Erythromelalgia Association? I am a moderator on there and I have found some very helpful suggestions.

  • Hi Sheltielife Thanks for the info about the bed fan. I will look into this. I have just bought a tube of ibuprofen gel with menthol in it. It helped a bit last night. I will also check on Erythromelalgia Association website.

  • Hi doris59 I don't think you will find the bed fan I bought available in the UK! I had to order it from America, but they do international delivery it was from a place called Borderfree. It wasn't cheap cost me £115 including the postage, but if it works it will be worth every penny. I can't use ibuprofen gel as I am on oral anti inflammatory medication

  • You can get small 4x4 or 6x6 on Amazon. I sleep with one on either side of my feet and lower legs and it gets me through the night

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