I am 47 and have been living with erythermalgia for 20 years now. I am very informed on the condition, but I do have one important question. We all know that erythermalgia affects the very small blood vessels essentially in the hands and feet, but my question is does it affect all of the tiny blood vessels in the extremities, i.e. small blood vessels in the skin, muscles, cartilage (ears and nose) ect.. or does it only affect the small blood vessels in the skin and possibly the fat layer underneath. What I mean is : is it just limited to the skin (let's say feet) or is it more general, meaning that it affects the entire foot, that is all the underlying tissue + skin? I would be very interested to hear from you if you know this. Thanks a lot.
For me it does feel like my feet are hot all the way through, so not like a sunburn, but deeper.
Sometimes when my feet burn I will put them under running cold water to cool them. If I do that for a short time, then they can become cold to the touch but still feel like they are burning inside. If I then take them out of the water and wait a minute, they heat back up and the flare continues.
To extinguish the flare completely, I need to keep them under the cold water for longer, until I can't feel any tingling going on inside them.
I know that there is a lot unknown about this condition so it's all but impossible to say anything about it is possible or not.
I can tell you about mine and I know of others like me. Those like me have it all over our bodies. Hands , feet , legs , arms ,face and scalp. I also get it in my eyes and tongue. When it is localized to the tongue they refer to it as burning tongue syndrome. I have heard of others having it effect them more internally as well.
It is most common in just the hands and or feet but it is certainly not limited to these areas.
Has yours suddenly seem to have spread after all of these years? I hope not.
I am sure with your dealing with this for so long there is a lot we can learn from you too so thank you for participating here.