Does Anyone else just seem to have EM in their toes?

General
1

Hello All,

So I am trying to decide if my EM is getting better- I know that the pain is better from the day it started last July 15th but, that may also be because I am more weight stable from the eating disorder- having gained a good 25 pounds and also having gotten my sodium level up to normal for 2 months now. YOu may remember that the one doctor said she thought that my chronic low sodium - it was low for at least 6 years as far as I know- was the culprit which damaged by sodium voltage channels.

Anyway, rather than the whole sole of my feet burning and my heels burning as well as my toes, my EM now seems totally localized in my toes. Also the flares are not continuous although the pain in the toes is. The swelling and redness comes and goes. But the weirdest thing is that the toes will fill with blood when I am standing with my weight on my feet and if I lift up one foot the redness goes away. That didn't happen before- it is almost like the weight of my body forces the blood into my toes. I was tested for venous insufficiency and that came back normal.

Also, it is true that my flares get set off when I travel on the bus or subway because I can feel the heat of the engines and under-carriage of the bus or train through the floor. BUT i notice that after I take my bath at night - which used to be torture and leave me trying to fall asleep with my toes ready to explode and my feet on fire- after my bath my toes are only mildly red and not really swollen anymore- in fact - the hot bath warms the rest of my legs which are normally very codl and some how the bath makes the feet feel better? Is this crazy?

Does this sound like progress after 11 months or is it just wishful thinking?

Also, I wanted to guess why the doctor did a nerve/skin biopsy to try to diagnose one of our new member's EM. I had nerve biopsies to rule out small fiber neuropathy. They check the biopsies for 2 things - to see if the nerves have receded from the surface of the skin due to damage and they check for your sweat glands. I had sweat glands on my thigh but they were not visible by my ankle, Since EM is partly about having trouble regulating body temp I think I have read that we have issues with not being able to sweat properly. Maybe that is why they could say it was EM after the nerve/skin biopsy??

best to all!
Jordy



2

Hi Jordy. It certainly sounds like progress to me! I am very happy for you. When my EM first started it was more localized in just the toes or fingers. It got worse and as it did it started spreading up my hands and arms as well as up my feet and legs. It sounds to me as if it is receding! I would keep doing what you are doing. Congratulations!

3

That sounds great Jordy. It’s what we are all praying for. I told you you should be celebrating!

4

Thank you both so much for your words of encouragement. I am trying to be positive but afraid to "jinx" myself. Since EM is so unpredictable, I don't know if it is just "intermittent pausing" or real signs of recovery.

I wish you both all the best!

Jordy

5

I know what you mean Jordy about intermittent pausing of sorts. Mine tends to wax and wane too. It’s hard to tell if you are really getting better or worse till something has been consistent for some time. I really do find it promising though that yours is effecting a smaller area. When mine gets better or worse on its own it’s not so much as the area that burns that changes as much as it takes warmer temps to cause my symptoms when it gets better on its own. The area that burns is the same for me though. I am keeping my fingers crossed for you! !!!

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Jordy I used to worry about jinxing myself. There was a stage when I was a lot younger when I believed that every bad thing was coming true and I though if I hadn’t thought it might then it wouldn’t have. Well 25 years later I have gotten over than and accepted that things happen or they dont. We don’t influence them by talking about them, worrying about them or imagining they night happen. Be optimistic and keep as healthy as you can and just wait for the improvement.

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Thank you Alina and Nel - your support means very much to me..

Jordy