headhunter

This is my main symptom when I get warm--it is painful, but it is more the unwell type feelings that accompanies these symptoms that hurt me--some type of severe discomfort that I cannot explain, and yes ice constricts these veins and solves it--as does cold weather

Even 65 is too warm for me...MomtoGiuliana, any advice on how you learned to cope?

Dr Grubb loves that med. Made me feel really weak and shaky. He said a study is hopefullly coming up to see how effective the med is. I probably should try it. Ur legs def look like EM

Ok now stop--Im saving to move to Canada!

I feel like there has to be something to regulate this. I used to be bad in 90+ days, then some years 80+, then 70+ , now 60+!!! ---its a sad slide. I always dream of moving to Alaska, but then I guess going inside from the cold will still be an issue

Hello--haven't been here in years--had POTS for decade plus--and erythromelalgia hit me last October, I had a grasp on POTS, but I have no answer for EM. Kalamzaoo did anything hep for you? And I also get the "dilate" state and my veins pop out. But it comes with this horrible feeling. Dizzy girls, so sad.....I bet your daughter is so strong. Does being in extreme cold help her? If im in cold where its numbing it really helps me..

Did you notice any heat intolerance from the Propranolol? Or lack of sweating?

Thank you! I take a diuretic and may even be on a vaso.....hmmm. Anyway I was hearing things like pyridostigmine is the end all anwer..now I see its another treatment..not an answer

I really stressed over it...prior to take off its hot on the plane..then it cools off. I had no issues with altitude and overall did pretty well.

Good luck and welcome....you mentioned arm and leg weakness, this has far far taken over my OI symptoms over the last year. Almost feels like more than POTS. Again good luck tommrow.

I actually learned to enjoy life this way for years. I got up, said this *****, but altered my life so much and got new hobbies, like rowing in my 50 degree basement, starting at 5 minutes. Movies, hockey games (dizzy as all ****, but got used to it), fantasy sports, walking..... How do you all deal with the emotional instability and changes that come with the physical issues? You just adjust...I left playing football and beach and working on my roof behind and accepted it. Unitl last October, when erythromelalgia hit.:(...but the point is the new normal worked for me....for years, so much so I stopped coming her for years:)

Incredibly interesting....some day this is all going to make sense to us....someday

There is a physician list on the site---ill link later. I go all the way to Ohio to see my doc. I know there is a couple in NYC....I am from south jersey.... Hope you feel better!

Im right with you Josh....and its been really bad lately. When I torture myself, I rehash all the things I used to do....or I look at my 85 year old grandfather do yard work on a 90 degree day... What helps me is some good indoor easy fun like a pool hall or swimming...usually we can tolerate those things...pool hall....sit down between shots.... Hang in there Josh and come vent whenever you need to!