Sorry don’t know why its in capitals. The story is two years of searching for help. It started with right big toe turning bright red ,burning and painful relieved by ice. Now my left tor is doing the same thing . My dermatologist thought to was EM but other Doctor(horrible attitude) said no its not. This is famous doctor recommended on this site but he was worst doctor i have ever encountered. I have no faith in his opinion as he only spoke to resident and didn’t ask me any questions. He stated EM can’t be just in your toes.
So help what do you think. If its just the toes can it be EM? I suffer all the symptoms described on this site and have suffered horrific pain .
Glad you are in we seemed to have trouble getting you to see your approval.
It is possible for it to start in your toes. One of the causes is poor circulation and that would start with the furthest part of your body away from your heart which is your toes.
I was once told by a doc that it isn’t possible to have EM all the time it comes as flares, but it is possible.
The trouble is not many doctors know much about EM.
Thanks, I have had a vascular work up which was totally normal. I started with podiatrist as I was determined to solve this problem. I had been using Treadmill at a fast walk for many years and loved the work out. At my yearly demonological check up I showed her my toes and thats when I first heard of EM. It started in right toe and now left ,however I do notice in a bath all the toes and bottom of feet turn pink. Now I have to bath with feet out of the tub or they hurt as if on fire. I have read this site and have all the symptoms that are described with secondary EM . However I do not find relief with my feet up and actually its when I sit down they get worse. Of course I have extreme heat intolerance.
so does anyone else have it just in the toes? I am getting housebound and depressed.
Any systemic disease that also have EM as a component?
Thanks so much.
Mine started in my big toe …and then slowly moved to the next toe and the next toe …lol
And the finally went to the other foot and literally the same process over again
A process of two months to have both feet red and cramping
I couldn’t even lay flat …like to go to bed
And sitting normally in a chair was awful…the pain would increase a lot with my feet
I thought forsure it was a pinch nerve or sciatica something…
Definitely EM can be secondary…to something causing it
…my case was from Late stage Lyme disease and coinfections BARTONELLA
BARTONELLA love to go to the limbs hands or feet or both
You need to take the correct test…the test the doctors give is inaccurate and will lead you to think you don’t have Lyme
It’s always good to rule out Lyme with the correct test and see if Lyme disease is a possibility
…if you suspect Lyme get to a LLMD Lyme doctor
Lyme can cause so many types of different pains , and affect everyone differently, depending on certain factors…what type of tick bit you , what other bacteria they’re carrying, the persons immune system etc etc
And no I don’t remember ever a tick on me …never seen one ever …most Lyme people don’t remember and often get misdiagnosed because they never saw the dang tick
Less then 50% of Lyme people have the bullseye rash , the doctors say you need …
Thanks but I have had several Lyme test through the years and all negative. Like many of you I’ve seen many different specialist without getting help or a diagnosis…
I have had two episodes of unbearable pain and am desperate to get some help.
For a year it was only my right big toe then left toe and now redness on tips of all my toes ; However the pain is always in the big toes.
Any suggestions on how to get help or what kind of doctor to see for this? I have tried the lidocaine cream ,gabapentin which I hated and I cannot take NSAID’s.
I also suffer from extreme exhaustion, itchy skin and flat burning rashes but thankfully do not meet the criteria for chronic fatigue.
My PCP tried to get me into Mayo but they refused to see me.
Does it sound like EM?
Hi Leslie…mine started in my toes and slowly started to spread up my feet and up my ankle to my shin. I also suffer with 2 types of neurapothy 1. Alcoholism 2. Diabetes 2. My hematologist is testing me to see if I have a blood disease. So far he is 95% sure I do not have a blood disease. My next step is to get a bone marrow sample. I also suffer with severe anemia. I get iron infusions once a month. The drs seem to think that all if it ties into one. My dermatoligist is having me try a lotion called Sarna and a medication called Misoprostol. I should know by 2 weeks if these are working or not.
Hi Leslie! Your experience sounds very similar to mine. I’ve had very similar experiences with doctors and my feet react pretty similarly (though I think it might be getting worse as it’s been a year). But I do think you have EM. I’m curious if you’ve found any help or if you’ve had further testing done? And trust me I understand what it’s like to feel discouraged.
Didn’t see a pic but sure sounds like EM to me. Mine started in little toe on one foot. Went to little toe on other foot.Then all toes on one foot. Then all toes on the other. Then soles/heels on both feet and hands. Then stopped spreading. Now one ear will go off, but it’s just warm so only the toes really hurt bad. You do look weird with one bright red ear and one normal. Like Rudolph. Has the hair on that toe vanished? Normal in EM patients. I have no hair on any of my toes now and as a man that’s pretty weird and the doctor that knew EM noticed that right away.