Erythromelalgia - To the person with the recent hot ears post

[DizzyGirls]

My daughter has been diagnosed with a rare disorder called Erythromelalgia.  To the person with the post a few weeks back on burning ears, you might want to check this out, as it is one of the symptoms.  My daughter's hands and feet turn bright red and then the burning starts.  It feels like fire is pumping through her veins.  No one has been able to diagnose her until yesterday.  She's been to 9 different neurologists at some of the country's finest Universities and nobody could figure out what was going on.  She had an appointment with her primary care doctor yesterday and he asked if her hands turn red and we said yes.  What about her feet? Yes.  He said there is something called Erythromelalgia.  It causes the blood vessels in the hands to dilate open causing spasms.  It is extremely painful and very hard to treat.  One strange test, though, is a response to aspirin.  You remember aspirin?  It's only 1.29 at Walgreens for 100 tablets!  Thankfully this was a cheap test.  If the burning sensation is markedly diminished after the aspirin, then it's a pretty clear answer that this is it.  My daughter said it helped the pain some, but then she clarified that the burning was a lot better.  Huh, who knew?!  Oddly enough, there is an autonomic component to this.  I swore up and down to her PCP that this seems to only happen at night.  It's strange.  Looking all this up when we got home, there was an article by a doctor that had lived with it for 10 years and explained that it had to do with the time of the day where the sympathetic nervous system settles down and the parasympathetic takes over.  Of course it's autonomic!!!  What ever made me think it wasn't!!  Is there no end to Dysautonomia??  There is a fairly large amount of people who have small fiber neuropathy with this also.  I think that the EM (as it's abbreviated in the literature) is a trigger for the small fiber neuropathy, not the other way around.  But, I'm still checking into that.  Well, something else to add to the Dysautonomia list!

[corina]

I'm so sorry more is added to your daughter's "list". I think I remember we had another member mentioning this (quite a while ago). At least the good news is that asperine helps with the burning! Sending good thoughts!

[DizzyGirls]

Thanks Corina!  Wish the fix was as easy as taking two aspirin.  It works some for the burning sensation, but doesn't do much for any associated neuropathic pain.  Fortunately, though, her hematologist called today and is prescribing a compounded cream to put on her hands and feet.  Praying this works!  Thanks for all of your help on this site!!!

[haugr]

Thank you DG, that is very interesting.   I will give the aspirin test a try next time it flares up.  

I feel so bad by the way for your daughter.  I am glad you got some answers.