Andy's story

hi,i have been blessed with this same problem EM it started several years ago and has slowly been overcoming me ever since long story short the pain for me in my feet was so bad i had to put my feet in buckets of ice to help the pain which then in fact froze my feet and gave me frost bite i had the blisters too they r from the cold and being in water for too long so as all this was happening to me i was trying to figure out why this was happening and could find some ideas of what it may be because the doctors that i did go see told me they cant find nothing wrong. so finally i went to the emergency room and they figured out after accusing me of only wanting oxy (apparently the oxy pill addiction was in full swing in 2018 and i put my feet in ice to freeze them and get a script for oxy pills) to be honest i dont like hospitals never been admitted to one and i didnt know what oxy pills could even do to a finally i got admitted and they found the frost bite and i also caused my feet to get cellulitis which is not something anyone needs to get in their lifetime so they pumped me full of antibiotics for 2-3 days while trying to figure out what was the cause of this in the first feet were both swelled up like balloons as were my calf’s ankles too red as nobody could determine what was wrong with me but the frost bite that i in fact caused by leaving my feet in ice water too long was now the reason i was there this hospital has been here before i ever moved here and i think i only been there one other time growing up for a tetanus shot.i live in south fla palm beach county and nobody could tell me why i was there except for now with my newer problem the frost bite so i got referred to a burn center that was in miami and about 60 miles from home.i ended up losing all my toes and part of the front of my feet spent 45 days in the hospital had 8 surgeries skin grafts on my feet and something like 2 million dollar bill with no insurance because they ran every test known to try and sort out my problem but never really gave me a straight answer, a little background of myself i been about 30 lbs over weight im 55 now i smoke and never been sick in my life other then a sinus infection maybe once a year they didn’t know i smoked until i told them. they said i looked like a 35 yr old man inside and all i could really say was please tell my feet this info.sorry for the wording of my story i have told this story so many times it is what it is. my life stopped back in 2018 because after finally figuring out i have EM,i inherited it from my Mom i was adopted when i was 6 months old and have found my original family but its nothing like a regular family life for me anyway my Mom denies having what i got because her doctors got her brainwashed i guess. i pretty much know what i know about this by researching it on my own,i was lucky to get ss disability and now after 24 months which is coming up in october from the first disability check i can now get medicare ins and go continue my trial and error treatments to hopefully allow me to get up and walk more then 10 - 20 feet .this deal caused my healing of my feet to all but stop the circulation to my feet is part of it as well as the pain i had from the beginning i have tried gabapentin ,mexiltine,some different histamines, lidocaine infusions etc all of them work about 15% to the cause but i pretty much quit taking all of it because i cant stand being a chemistry set . so when my insurance starts i am going to try this infusion of a few different meds that they put in ur back for like 3 days the results from what i read say the patients have been relieved of the pain from 10-10 to 2-10 on the pain chart 9 months running so thats my next treatment trial. after that if no results im getting the nerves cut to that area they say that its not a for sure fix but they at least know which ones to cut and i should still have my ankle movement and all far as the swelling some of u r having i have the same thing my right calf is twice as big as my left and i was lucky to talk my pain doc to give me a shot of something in my lower lumbar spine place that actually made the swelling go all the way down but only lasted for about 10 days, it even helped the color in my legs to being less red but it was short lived. i know there is a lot of stories out there because i have read most of them so everybody has a different type of pain or whatever but it still boils down to the same thing. EM
thats my story and it really suks to be me but im never giving up on finding a way back to some sort of being normal again.
take care everyone and good luck ANDY

PS…if ur legs look like cottage cheese bumpy weird looking u may have cellulitus and it can kill u so go see the doc they can diagnose that anyway…

@Andy oh my goodness ! I am so sorry for the awful journey you have had ! That’s just horrible ! The treatment you revived was so horrible - i’m so sorry you were treated that way :frowning: I hope you finally get some answers ! Take care :slight_smile:

So sorry for you Andy. God bless you.