I'm so sorry that the pain has become constant for both of you. I appreciate your responses, as I try to figure out what is going on with my circulation.
Danny, where did you read this info? I want to find more information about EM, but most of it you have to pay for.
@missrandalee: did you experience the pain right from the beginning or did it set on later?
It was probally on wikipedia or the em association website.
http://archderm.jamanetwork.com/searchresults.aspx?q=erythromelalgia&t=&p=1&s=1&c=0
is a good one, most of it's free but it's older. still, i found some that you have to pay for else where, free here.
http://en.wikipedia.org/wiki/Erythromelalgia
I suggest following the links and reading up on the sodium channel and any words you don't understand(for me was all that I could click on lol)
http://www.erythromelalgia.org/
probally the most reliable and is a must for anyone with EM as its always up to date
Thank you both for the great info!
Aftertheteacups, you got me thinking...my feet do turn purple when I'm sitting. So much so that its gotten the attention of my family. I wonder if this is a pre-symptom. That's been going on the last few years and now I've been having flareups of very red feet and constant red palms...but no pain. I'm a newbie and am happy to have found this discussion. I was doubting that I actually had EM because I too have had no pain...just a very uncomfortable feeling with the heat. So now I'm with you all wondering if we will all start to develop the pain at some point. UGH.
Hi Cindy Lou, I am still wondering if I definitely have EM. My doctor didn't seem to know what it was called when I described my symptoms to her. I am wondering if I just have mild EM, or something else. But as Liz mentioned, I think my problem is related to Raynaud's. Do your feet or hands turn blue, purple, or white and lose feeling ever? If so, you may have Raynaud's as well.
Yes, my toes turn purple...and my mom has Reynaud's so I suspect its all related. I'm having a hard time getting anyone to address the question of EM occuring without pain. I sure hope this is the case because the pain everyone describes sounds terrible. Do you have cracked, prune-looking fingers? Has your doctor prescribed anything? I'm on 25MG of Amitriptyline, but I can't honestly say that its done anything. He said that I should double the dose after a week. I'm hesitant to do so.
aftertheteacups said:
Hi Cindy Lou, I am still wondering if I definitely have EM. My doctor didn't seem to know what it was called when I described my symptoms to her. I am wondering if I just have mild EM, or something else. But as Liz mentioned, I think my problem is related to Raynaud's. Do your feet or hands turn blue, purple, or white and lose feeling ever? If so, you may have Raynaud's as well.
Hi Cindy Lou,
I have yet to take anything for it. When I was young I was on meds for the Raynaud's, but they made me dizzy and weird. Then I tried topical relief but found that to just be annoying (I was also a kid, so having to go get the cream and rub it on my feet and hands seemed like a hassle haha). I hope you will feel some relief with the Amitriptyline, perhaps trying 1 and 1/2ing the dose instead of doubling it?
Also, my fingers don't necessarily look cracked, but I have been very good about moisturizing lately. However, when my hands get cold they get deep, prune-y lines on the TOPS of my fingers. When they are hot the lines disappear. It's as if the blood gets sucked out and makes them prune-y with the Raynaud's and then comes rushing back and the lines go away with some of the (albeit slight) swelling I experience with what I think is EM. Does this sound familiar to you?
My toe nails are also very brittle and have grooves in them, which I have also heard is common with Raynaud's
I believe what people think is Raynauds is just a symptom of EM. EM works in two extremes. When the affected area is exposed to cold the blood vessels constrict. Not only do they constrict but they constrict to their most extreme state and take longer then normal to return to their original state. It works the same in heat also. The blood vessels contract to the extreme, allowing more blood to flow, thus the burning sensation, and take longer to return to their normal state.
I believe many EM cases are just symptoms of Raynauds ;)) When Im treating my Raynaud's my EM goes away too. Anyway my doc wanna test me for Lupus to find out if my Raynauds isnt secondary to it...
NiceGuyDanny said:
I believe what people think is Raynauds is just a symptom of EM. EM works in two extremes. When the affected area is exposed to cold the blood vessels constrict. Not only do they constrict but they constrict to their most extreme state and take longer then normal to return to their original state. It works the same in heat also. The blood vessels contract to the extreme, allowing more blood to flow, thus the burning sensation, and take longer to return to their normal state.
Hah! Yes, I guess they can both be symptoms of the other. I kind of like to think of my extremities as circulatory-impaired...and the blood can go either way, too intense or too scarce. They seem to be two different sides of the same coin.