18 years old with EM for 4 years

Hey everyone, I’ve recently been diagnosed with EM after hours of research including this forum :slight_smile: Four years ago when I was 14 I had ankle surgery, turns out I was born with no ligaments in my ankles! No more sprains for me! Unfortunately that’s when my EM started, I noticed when I would stand for long periods of time my feet would turn bright red and itch/burn, the doctor who had done my ankle surgery diagnosed me with raynauds and sent me on my way. Fast forwards to today and I have seen my gp who was clueless as to what it could be and after trying several things and me mentioning EM he referred me to a vascular doctor which I have not been able to see yet. In the meantime I decided to go back to my foot doctor as I call him. I mentioned EM and his face seemed to light up with realization, he had heard of it! I am now diagnosed with EM and raynauds and he said something about my autonomic nervous system? I wish I had thought to question him more about it, currently he is having me try an anti-inflammatory so fingers crossed. I have found the hardest thing is lack of support from my family, I am completely reliant on them as I can’t work and never have been able to work as it began at 14 and I was denied for disability cause I haven’t worked (we’re going to be seeing someone to help us with it) My biggest issue is my mom doesn’t seem to get how bad it is, at first before I had a diagnosis she would constantly yell that I just needed to exercise and I would be fine, which I did try, 30 minute walks with the dog, which became rarer and rarer as I got worse, I was borrowing my grandmother’s walker for a time I could barely walk, I still am in that state really but now stuck in a recliner all day with my feet elevated. Even having my feet down at all I will start to flare and don’t even get me started on standing or walking, my feet turn into a tomato! But it’s the pain and itching I can’t stand, I wish I had a wheelchair for out of the house and around it for really bad days but my mom has made that clear it’s never going to happen unless I come up with the money myself. The only walks I can take my dog on are barefoot when it’s cool outside but then my raynauds flares and it’s a very short walk where I start to have an EM flare by the time I’m home from it. I’d say fine I’ll live in this recliner the rest of my life but the rest of my family refuses to take him on a walk for me and that’s not fair to him. In short I’m just lost on what to do, how am I supposed to work, to move out on my own, even take my dog for a walk! I can’t just ‘live with it’ as my mom says to do, that’s no way to live.

I’m so sorry to here about your situation. It’s sounds like your on the right track seeing a specialist .
A Few people with severe disabling EM have had some luck with heat desensitization . There are a few books on amazon. Maybe worth a read . As for anti inflammatory meds it can’t hurt to try .
Mayo Clinic has posted thier protocol . I’m going to try and post a picture of it . I printed from medical library at work . Step one is aspirin and topicals with behavior modifications

Step 2 would begin the pharmacology options. Many people can be managed with step one. I’m not sure bc I could not. I am barely getting by on step one. But can walk far for the most part and still work.
Mine flares after a ankle injury also.

Welcome to the forum .

1 Like

Look at you welcoming people to the forum when you just joined 3 days ago yourself. Good job! :hugs:

1 Like

Haha thanks. Still trying to navigate the forum from my smart phone . I think I’m gwttong the hang of it . Is there a app

Honestly I feel if you have EM, it should be automatic disability. Even in the literature it says severe crippling pain. I managed to get a job where I only work 5 hours a day…an hour into my shift, I am in severe pain. But my neuro just wrote it down on my chart, like it was nothing for someone to be working in severe pain. :frowning:

Yeah I feel the same way… However it seems it’s too rare and misunderstood for people to really care to put it in the blue book. It sucks so much when someone doesn’t understand how much pain we’re in, it’s like no I can’t go shopping with you mom unless I have one of those electric carts because it’s far too painful just walking around a store. I used to be able to but the past year it’s just gotten to that point I can’t.

Thank you for the welcome, welcome to you too :slight_smile:
I have tried aspirin and topicals already, unfortunately neither helped and I’m running out of different medications to try. I’ve seen a bit of the heat desensitation though I’m not sure if I could survive going through it.

The past few days I’ve had ‘mini flares’ at night though when I put them out from the blanket they get too cold and I can’t sleep but under the blanket I flare again.

I think heat desesitation is interesting . I am trying it now . I use hot pepper cream from the book on amazon. Some people have had amazing results . It so Frustrating . I believe this is why no one thing works for everyone . EM is not a disease . It is a clinical entity or finding . In Mayo clinics most recent post they state that they are now refering to it as a clinical syndrome. Most people on here have it no doubt . Its root causes are yet to be determined . Think of it like joint pain . It has many different causes . Not all cases off joint pain respond to the same treatment. I think the best thing to do is find something that helps and stick with it . Then find something else that helps a little more. If what you are doing isnt working change it up .
I started the heat desensitization because aspirin was not helping very much and rather than sit around waiting for my next doctors appointment is was something i could try . I has not made my symptoms worse except for the pepper cream . That causes major feet flares sometimes but actually did it yesterday and today not doing to bad. It calms down in a few days .
Dont be scared of increased pain . It will be more painful but at least when you do something to yourself that causes pain you know why . I was scared when i did the first pepper treatment and flared like never before . my symtoms are usually mild and they went to extreme for like 48hrs. After a few hours i was not scared and new it was only temporary and just a part of experienting . I just figured no1 is making me do this pepper treatment so i can stop this protocol and go back to my old symtoms at any time.
excuse all the spelling errors. my iphone is hurting too . lol
just ease your way into whatever you do . if you change to many things you wont know whats working .