Another Question as I make lists for the neurologist on Tuesday

Thank you all for all that you have shared already.

I want to ask the following novice-like question:

In between flares, assuming that you are not in a constant state of flaring, do you have any periods of feeling "normal" in your feet or hands?

For me this is a typical day- remember I was diagnosed by a doc who deals with eating disorders and thus understood that my chronic low sodium might be the culprit and she saw photos of my feet- all the other specialists over the past year have "poo-poo'd" the low sodium because it isn't dramatically low - the sodium and chloride are each like 5 points off the lowest score on the scale but it is chronic so it has had time to do a lot of damage.

Anyway, between the level 10 pain and redness and swelling of my toes and the soles of my feet, I never feel normal. I have constant neurologic activity. I feel pins and needles, popping and like the whole bottom part of my legs from my knees to my toes are attached to my body with wires- like I am a puppet. I never feel like anything in my lower leg region is just the way a normal person feels. and this has been since August 2012 when my toes went numb- before the pain and burning started in July 2013.

Can you please describe your pain or your symptoms between real flares?

Thank you!


Thank you Tizzy, How long have you had EM?? do you have it in your hands and feet?

Hi Jordy.

I rarely feel normal in my hands and feet. Mine are usually burning or freezing . They are almost never what I would describe as normal. I have had bouts of strange sensations but not on a daily basis. One time for about a week it felt as if a section on my foot was constantly being stung by tons of bees. I have had what felt like water droplets on my knees and nose that when they occur last for a few months at a time as well as a crawling sensation in my ears that come and go. On a regular basis however it is generally a temperature problem with my hands and feet. In that rare moment they feel normal it feels so good! I may just get that sensation of normal for a minute or two at a time and only once in a blue moon.

I am sorry to hear your strange sensations are constant. Even when I have a sensation that is not particularly painful it still wears on me. It tries to drive me crazy!

I hope you find some answers and some help.

Take care,