Originally Posted by norahs

Hi Brenda
I was diagnosed with EM in April of this year. Up until then all the doctors I went to told me that I had PN. I feel fortunate that I found a doctor and was diagnosed correctly within about a year. I suffered terribly and had indescribable pain and knew there was something more wrong than PN. My feet were literally on fire almost 100% of time. They would become bright red and once the heat subsided there were actually burn marks left on my skin. They sometimes peel from the burns. The pain is not always the same. Sometimes it was like walking on broken glass. When this happened I just generally went to bed with the pain. Neurotin helped me but wasn’t the total answer by any means.
Because EM is so rare doctors don't recognize this disorder and I believe many go undiagnosed. Until I was diagnosed I thought I was the only one with this kind of pain, the doctors didn’t seem to understand my pain level and I couldn’t seem to make them understand how bad it was. Then of course depression set in and I just got lost in the whole cycle. It is not a good place to be and you think that you are going to die because you can’t seem to get any help. There were days I didn’t want to live. And if all that wasn’t enough I no longer had any social contacts. I was just hiding out with my pain. Thank God that is behind me, I have the pain pretty well managed at this point and I have a doctor who is willing to work with me to get my life back.
There are many causes and it can be next to impossible to figure out what exactly each case is caused from. My cause is "unknown" so we are now (with the help of a really wonderful doctor) trying different things (med's) in the search to find something that works for me. I went to several neurologists plus my primary doctor and I finally got help from the head of the pain department here at the University.
• The one thing that made the biggest improvement in my pain (aside from prescription drugs) is Claritin. I read someone else's story a while back and she mentioned that her doctor didn't know the name her condition but had seen it before and said it would respond to an antihistamine. She said over time (6 yrs) she built up a tolerance and she was once again looking for something new to try for pain. I suffered from almost constant flare-ups which meant my feet were bright red and burning hot all day long. Now the flare-ups are much more infrequent and way more manageable
I think I'm probably rambling on but know that when I first came to Neurotalk I was so hungry for information that it just felt really good to be in the company with others who understood what I was going through. I hope my rambling helps someone else.
Here is my regimen: Gabapentin (600mg x 3times per day), Nortriptiline 20mg each night (helps with maybe 5 minutes, just long enough to cool slightly. I do this off and on until they cool down. I do not wear closed shoes anymore nor do I wear socks. I do not cover my feet at night and most recently I can't put a blanket over my legs as they get very hot, it’s kind of like stoking the fire. I do have an overhead fan which cools at night in addition to the recently installed air conditioning. I also cannot drink any alcoholic beverages, it just lights a fire. Some hot spicy foods do too. I avoid all preservatives and most particularly MSG. On days that I chose to walk any distance I just know that I am going to pay a price for the next couple of days so I plan my days very carefully taking everything into consideration.

I wish you the best of luck on your search for answers and understanding. There are some amazing people on neurotalk so I know from experience that you are in the right place. God bless.
p.s. I am fortunate enough to live where the temps are cool (Washington state) so I can enjoy the outdoors most of the year but if it's over 65 even living here isn't too much fun either.