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Welcome New Member Introductions
1

Hey Everyone,

Nice to find this site out there, as it seems there isn't much hope nor resources for folks suffering from EM. Thought I'd share a little about me and my issues, appreciate anyones feedback and advice.

I'm male, 34, I'd say fairly healthy, average height 6'0, average weight 185. Was a long time smoker, but have been off them completely for two years. Drink a fair amount, I'd like to blame it on work as I work in advertising and do a significant amount of client entertainment, but also greatly enjoy wine. Don't exercise much, not like you can with this issue, do play a ton of golf, swollen burning feet an all. No famiy history of this, or really anything for that matter, no cancer, no neuro diseases.

Started noticing issues with my feet, probably two years ago. Lots of redness, feeling of swelling and that burning sensation everyone talks about all the time which I presume to be a flare up. If what I have isEM, I presume I have a very mild case as I've read some of the pages on here and don't suffer much past being annoyed and general discomfort from the ankles down. I don't have and have never had issues at night, in terms of EM keeping me awake or having flares while simply sleeping. I feel like I've ready about people sleeping with their feet in cold water, and under fans. I seem to rather get a break when my feet are up and not being used. My issues seem to stem simply from being upright, including walking, standing, and the occasional run/jog. Sitting here at my desk writing this note, my feet don't feel good, slight dull soreness and tingly sensations, and heavy. I always seem to have this feeling of "heavy" from the knees down like there is extra water/weight in my legs from the knee down, hard to explain maybe that's the feeling of swelling?

Anyway, I don't frequent the doctor often, outside of regular annual checkups as I have no other reoccurring problems, don't take any meds, so don't have a great relationship with a physician. So when I really got concerned about this problem, I first found myself at a dermatologist due to the redness that appears when I take my socks off, or after I get out of the shower. Something in me thought it might be skin related so off I went. The Derm checked out a few things, and pretty quickly pointed to EM and suggested it was a mild case. He gave me some information and talked me thru what this was and that it was uncommon and that there wasn't much out there to treat it. Did way more than most doctors do in terms of making you feel comfortable. He sent me home to guy some baby aspirin and instructed me to take one a day for a few weeks and thought this would likely go away. I'm not sure I even remember a slight improvement so I went back to him for more feedback. Next try was Neurontin which I've been on ever since. Seems to help "numb" things a bit, I now take one a day in the morning before leaving the house and sometimes pop an additional one around now/4-5pm if my feet are bothering me or I'm headed out for the evening and have to rock some more uncomfortable shoes. I've seen several doctors since, my primary who said to keep doing what the Derm said which my guess means he doesn't know what EM is, a Neurologist to rule out anything neurological, and a podiatrist which was a joke.

Sadly work has kept me busy enough that I'm distracted from trying to solve this, but I'm back in the mood to try and figure this thing out once and for all. I feel like I've basically managed to figure out how to live with the discomfort. I wear super comfy nike tennis shoes with air insoles a lot of the time, especially when walking....I live in Chicago and have to walk a lot. If I'm not wearing sneakers, I wear driving/shoes or loafers that are lose and comfortable. What ever the shoe, I always typically have two on hand. Tennis shoe for walking and dress shoe for work if needed. Needless to say I'm sick of carrying around 2 pairs of shoes and unhappy not being able to wear the ones that aren't the most comfortable, I have a lot of shoes...:).

I've def. noticed a few things that seem to cause issues with my feet, Salt for sure. I'm trying to stay low sodium for the next few days to see if that helps at all, being almost two days in and given how my feet feel right now, I'm not sure its helping much, but I still swear a few heavy days of overly salty foods causes my feet to swell. I can't tell if alcohol bothers me/my feet, but I think I'll hit a few days without it and see.

The worst part of this is Definitely when I get the burning sensation, it's reminiscent of athletes foot, but the general annoyance the nerves on my feet seem to have is terribly annoying. I've gotten to the point where I only wear certain type of socks as I can "feel" the socks on my feet and ankles most of the time and some almost hurt some times, same goes for shoes.

I've reached out to my GP to see who I should see next Doctor wise, but most doctors just keep pointing the finger at others saying I don't know or this is their issue. Given I live in Chicago and near many of the finest medical institutions in the world there has to be someone that knows about what's going on and what can be done to get better. Wouldn't you think?

Unhappy Feet,

Hunter

2

hello,

Sorry about your EM. I know you will feel better sharing and reading replies from others on this site. It has helped me with support and not feel so alone with this monster. I have had it all my life but have gotten worse over the past 10 years. Check out Dr. Cohen's website. He is a dr. that has EM and talks about his journey and recomendations for the disease. He talks alot about magnesium. Also try the EM association. They can help out with information and they have a member list. you may be able to find someone close to you and maybe even a dr.

take care, Got to go cause my puppy is driving me nuts and I can't type anymore.

Cindy

3

Hi Hunter,

Like you I'm 34, I've had EM since I was seven. It must be so hard to suddenly have this thrust on you and have to deal with the results.

The symptoms you mention are typical of EM, I know exactly what you mean about the socks, I am so aware of socks, bed sheets and the flooring I'm walking on. I have difficulty getting a pair of shoes that will not cause me pain and that I can actually walk in. I had to take two pairs of shoes to my sister's wedding, one pair that I could actually walk in and another pair that looked ok for the photos but that I couldn't bear for more than a few minutes. I only have one pair of shoes that I can wear at the moment. I find it difficult when other women are talking about the shoes they have and how a certain pair are painful to wear, I always think that they don't know what a really painful pair of shoes are unless they have EM!

I take Neurotin too, and it can have great effects on EM patients. You might have to start taking it twice a day as EM is known to be especially "active" in the evening and at night. It must be very difficult for you with a job that involves so much social activity. Having to entertain a client when all you want to do is get your sock and shoes off and lie down must be torture. I think every patient finds the burning to be the worst part, basically you're being hit by two important messages to your brain, one saying there's pain down there and another saying you're being burnt.

Diet can definately help EM. Unfortunately for you, alcohol is a well known trigger of EM flares. Would it be possible to make an excuse for not drinking, perhaps you could say you're on antibiotics or some other drug? If someone asks whats wrong, you could say that it's an infection in the foot and requires long-term antibiotics. Along with salt, I avoid spicy foods. I wish I could have a glass of wine with a meal sometimes but I tell myself that the pain simply isn't worth it.

I hope that you are finding this site useful and you can find an EM specialist in Chicago, ask on here.