My history of EM

Hello!! Its the first time i am posting. I am Tania, a 24 years spanish girl, i have been 8 years suffering from EM, it almost took my life away. I lost my teenager years and my young years, that seem the most important. I has been housebound and really depressed, i had to have my feet on iced water all the time to stop feeling them and dont have flares. When i had ulcers it was the worst time. The pain is 10/10. I spent nights screeming in pain, had to cold my feet on iced water(really cold). Couldnt even take my feet away of the iced water. I had an iced cube in the school. I was always bad. I never had fun, my life was hell. I had suicidal thoughts(sometimes i still have them). Before EM i had 3 years of muscular weackness(i think disautonomia) and anorexia, and also i was bullied. I dont know if it all triggered it, but my whole life is hell. Las 2 years i am getting better but i still have strong flares(this summer mas terrible, i had my whole body burning), but it october, november and december i had firstly gone to some places to have fun with no pain, but this 2 weeks pain got worse again. Sometimes i still think of killing myself, i almost tried it with 18 years, but i have been so disabled that i couldnt do it(i couldnt go away and in my house thats impossible).Now i have more movibility… i dont know, i only want my life back. During confinment my feet got worse, i couldnt do anything, the pain was so terribel that i stopped eating, couldnt walk, couldnt almost talk and was letting me to die.
A doctor sent me to hyberbaric camera and gave me some pills. Walking there was terrible pain, i was always crying when walking and some times even lost conscience. That was months, when my ulcers got better i recovered a little bit.
The thing that helped me more was presotherapy and linfatic drenaige, also some pills, constrictors and a lexatin i take 2 times a day. And i have to do exercise and walk everyday and its terrible painful. After exercise my feet and hand flare terribly. After the bath too. Its hell. I think its the worst disease of the world, its living hell.

Very sorry to hear this. Have you heard of Bob’s Protocol?

Hang in there! We are rooting for you. Have you been able to find any doctors who specifically know about EM?

Yes, but its so painful… now my threatment is walking and its terrible pain too

An idea would be to find a functional practical specialist, who can examine your body and organs from a different perspective instead of a medical docter.

The approach is different for finding the route cause.

Get a hairanalyse to find out which minerals you may are deficiency.
Get bloodwork done to see if you have any issues with immune.

You could try cold showers and breathwork to let go of traumas in your body.

Do it step by step.
It’s never to late and the body is very smart for healing it’s tissue.

Just start with something and you will learn on the way.

Sorry you’re in so much pain. Doesn’t ice make it worse in the long run? Can someone comment on that ?

You write so vividly, Tania. Our stories have so many similarities, so much in common with our EM history.

I ride a bike b/c walking is so bad for me. Have you considered a bicycle?

Have you been seen for Raynaud’s disease? For me, I feel confident that anorexia led to Raynaud’s and then progressed and the EM came on a few years later. The raynaud’s was so severe, ulcers like you. It’s been about 20 years on for me and now I can avoid ulcers, but I still get riddled with chilblains and I have severe pain all year. It is debilitating but I have learned how to continue life and live with EM and Raynaud’s.

Are you able to seek out therapy for your suicidal ideation? I’ve also seen a pain management psychologist, which helped me a lot.

Have you ever seen a dermatologist? The doctors need to help you get your pain more under control. For me, I’ve tried most of the therapies, and none have helped with the severity of the EM or Raynaud’s, and I had a lot of bad side effects. So I have done a ton of lifestyle modifications over time and now I am able to avoid being in 24/7 constant 10/10 flare ups.

There is hope! You will always have these low points and then you will get through them and feel more like yourself. Over time, with support and learning about what will improve things and allow you to manage your pain more, you will find peace and happiness. You have come so far, you’re strong and there is a way through this.

I do hope you connect to healthcare professionals about your depression and suicidal thoughts. That is so urgent right now.

Sending this message with love.