Originally Posted by norahs

Hi Brenda
Although it doesn’t help I want you to know I understand exactly how much pain you are in. I am so sorry this has happened to you. Now you know that others also suffer and you can reach out anytime you need to talk to someone. There is no understanding this kind of pain unless you have it.

My best advice is, don’t give up. I know the pain is incredible but there really is help if find the right doctor. The doctor that finally diagnosed me is interestingly not a neurologist. He specializes in pain management so he is truly looking at the whole picture. My suggestion (before you travel across the country) is to have your primary doctor recommend a doctor in your area who specializes in pain management. And if that doesn’t work then perhaps you can call around to different doctor’s offices telling them you are looking for a doctor who recognizes and understands EM.

From what you have said I do think you have EM in addition to your other issues. Unfortunately EM, many times, accompanies other disorders/diseases. I have EM, Reynaud’s and PN so I understand very well the hot/cold issue. If you fix one then you get the other. Both are terribly painful and at times you are so consumed with pain the rest of the world just doesn’t exist. You wonder if you will ever have anything close to normal in your life again and wonder how you can possibly live this way the rest of your life. Does any of this sound like you? Please, please don’t give up, there is help out there.
My feet always hurt and that never goes away but during “flare-ups” it is purely horrific pain. The pain does vary; it seems to be on a sliding scale. Some episodes last a few hours and some last days and I had one that lasted three weeks. I think I have most of that behind me now, the pain is managed and most days I lead a fairly normal life. I cannot walk far, I watch what I eat, I take nerve pain drugs such as Neurotin and Nortriptiline and I take my beloved new friend “Claritin”. Since Claritin there are much fewer flair-ups and when they flair the pain is no longer mind numbing.

I do think it matters that you get diagnosed properly, there are treatments that can help and the sooner you get the right diagnosis the sooner you can be helped.

In the meantime, keep yourself cool, stay away from alcohol (oh, how I miss my glass of wine), stay out of the sun, go barefoot or wear sandals (even in winter, who cares what people say), leave you feet out of the covers at night, don’t use any heating devices such as heating pads, soak your feet in tap water only during hot flare’s, stay in air conditioning if at all possible. I realize this is all very limiting but I do whatever helps control the flares.

Brenda, I would be happy to correspond with you through my private email if you think having that “live-line” might help you. I know there is a way to send you a private message through this site and I will figure it out if you want me to. I too am fairly new to this site and I love it. It lets me know I am not alone which is about the most important thing when you are in so much pain. Everyone on Neurotalk is very kind and caring so keep reaching out.

Like “zygopetalum” I believe EM is not all that rare either but just misdiagnosed. If they don’t recognize it they can’t very well diagnose it. Sad. Once I told my doctor that heat and alcohol triggered flare-ups he knew immediately that I had EM. And fortunately on one visit he got to see one for himself. Generally doctors can only diagnose based on what the patient tells them because most pain and flares are at night like you I had them all day long and was fortunate enough to have one for him.

My name is Sharon, I am not sure why I used an alias and too late to change now. I live near Seattle. I would be happy to send you my doctor’s information if you need it and are up to the travel. I will tell you I waited four months to get into see this doctor and of course now I am very happy that I didn’t give up. I’m sure you have great medical care in Atlanta as well, you just have to search.

Take care