New to forum brief introduction

Hi everyone,

I am new to this forum and this is a quick post to introduce myselft. I have been living for 20 years now with erythermalgia. The onset was very sudden at the age of 27 and very extended (feet and legs up to knees, hands, face and ears), on the bright side, my condition has been extremely stable ever since, no better, no worser. The warmer the weather and the more constant my flare ups, although I am kind of constantly in a flare up. My feet are never a normal temperature, they are other cold/icy or getting progressively warm/warmer/hot/burning, until I cool them again in water.

Thinking back, I think erythermalgia was lurking since my adolescence, and just popped up at a moment where I was possibly more stressed, but would have come anyway sooner or later. Ever since puberty, I’ve had livedo reticularis on my legs, thighs and even buttocks, which for me is already a sign of bad circulation, and most people with this seem to develop acrocyanosis and/or raynauds later on. I also developed acrocyanosis about 2 years before my erythermalgia appeared.

I don’t believe in the notion that cooling your feet in frozen water worsens the symptoms. I believe if your EM has to get worse, it will anyway. So I’ve always cooled my feet in cold/icy water as much as I wanted and it has never made things worse, on the contrary it is the only thing that helps soothe the uncomfort/pain. No medication I have tried has ever worked, so I stopped trying long ago.

I don’t have any problem sleeping (except when it’s very hot) as I don’t have air conditioning. What I do for a good night’s sleep, is prepare of basin of icy water, and the last thing I do before I go to bed is soak my feet in the water until my feet are nice and cold/ frozen even, and then I go to sleep with the covers off my feet, and if it’s hot or mild I also have a fan blowing on my feet all night. Doing this means that unless it's very hot, I have a nice peaceful night.

When it’s very cold, I can wear boots, but these have to be100% unlined leather. There must be absolutely no artificial lining or padding. But of course I am barefoot inside the boots.

Forgot to mention that I developed the symptoms in 1994, and self diagnosed a few years late when I got internet. I went to see different doctors some of which listened, some of which didn't. Those that did prescribed the different medications I'd researched, but none of them worked, or if they did, the so-called improvements were not worth the side effects of the medication.

Thank you for taking the time to share your story with us Lizzy.

20 years? I am so sorry. I am at year 5 so I will most likely see that day as well barring new developments in treatments or a miracle. It sounds as if you have your manageable anyway and it sounds as if your spirits are still high. That is great!'

I think it is important to make every attempt to stay positive and find as much joy in life as possible. As you said if it wan't to get worse it will regardless of how you are emotionally handling things so it's better not to waste time dreading what is to come if you can.

I am glad you have had no ill effects from ice water usage. I know some have not been so lucky. I'm sure it all depends on how each person uses this method and their individual body makeup and sensitivity. I could never attempt this without certain complications because of my extreme sensitivity to cold as well. I have serious numbness and loss of blood flow for hours after just handling things from the refrigerator and must wear gloves to handle things from the freezer.

I go through periods when my feet just don't want to let blood in for weeks to months at a time. When this happens I get sores all over them and risk losing my feet all together. My feet are doing this or burning at all times. long story long ice use would be dangerous for me anyway. As I always say about everything because I am not a doctor is always check with your doctor before trying Ice therapy. They can at least tell you the safest method if they feel it is safe for you to use. Of course I am referring to people in general not you Lizzy as it sounds as if you have it figured out.

I am sorry you weren't able to find a medication that would help. I am still on that experimental journey.

Take care

Hi lizzy

and welcome!