Quote:
Originally Posted by brendaingram
Norah (I assume this is your name!),
Thank you so much for your response - you are right that I am eager for info, as you were. I'm experiencing most of what you have in the past. I am lucky that my feet are not on fire 100% of the time, only probably for 3-6 hrs every day, but they do hurt 100% of the time, going from tolerable pain in the am to intolerable every night.
The depression and removal from friends and life is so disheartening. But I just started Lyrica and already it seems to be working a bit - even at the low dose.
What scares me is sometimes my feet are so bright red and shiny, but just lately they have also gotten so cold and turn blue/purple/blotchy, and my hands turn so cold too. In my research of EM I found a side effect called Raynoud's which is the opposite of EM.
Re: EM, been having painful earlobes of all things for the last 3 weeks. It's mostly just annoying but can't sleep on either ear. Just got diagnosed with TMJ because I had 8 dental surgeries in the last year (yeah, the year from hell). Primary Dr. thought earlobe pain was from TMJ, Oral Surgeon says no, not from TMJ. But I read today about EM and how it can affect the ears and face. Lately when out in the sun my face turns bright red and tingles.
So I'm sitting here thinking I have EM but how unlikely is that? I saw an ESPN profile for Karen Conklin, who has EM and ran a marathon (OMG!). The report said that only 400 people in the US have EM.
I am type 2 diabetic and have been diagnosed with diabetic peripheral neuropathy, small and large fiber peripheral neuropathy. My neurologist thinks the additional symptoms are PN (bright red shiny feet on fire, and then the flip side (cold, blue/blotchy) and if I look at the bottom of my feet they are red and white blotches.
Does it really matter if it's PN or EM in the long run? Can you guys tell I am at some kind of breaking point right now? I'm swinging between anger and tears like a see saw. Norah, if you have additional words of wisdom, please share. Do you think your Dr. might take an out of town patient who could fly up there? We have family in Portland we need to visit.
Brenda  |
Brenda,
I forgot to say that I also have hot spots in different areas. This doesn't happen very often but it has sporatically. Once one ear, one side of my face and the palm of one hand. This happened all at once and the ear was on one side and the other areas on the other side which I thought was very weird.
I also wanted to mention that the doctor has tried me on different blood pressure med's but I really didn't see any benefit. Soon after a new BP med I started on the Claritin and things immediately improved.
On the day of diagnosis the doctor told me the only know treatment was Aspirin and ice foot baths. That is the whole extent of their documented knowledge. Fortunately most are willing to then start trying new things.
I have read that a huge amount of people with EM are self diagnosed and then find doctors to treat them. And they are self diagnosed because no one recognizes what they have. Others have stated they got help from good dermatologists and podiatrists neither of which I would have thought of. So if you know anyone in either of those professionals perhaps that's an avenue you can explore.
Another thing I have tried which I haven't mentioned yet is
Magnesium I am not the expert of Magnesium but because it is mentioned so often as a miracle I started taking it. I do feel it helped immensely with depression and brain fog (which I had in the worst way) and I continue to take a dose several times a week but not every day. I take a powder form which I mix with water. My understanding is that pills are not very effective because of poor absorbtion. I only mention Mag because it's something easy to try.
Think I said before that I was willing to try any and all. I'm sure I have only tested the tip of the iceberg however and I'm still open to suggestions should someone have other ideas.
Hope you don't mind all the random thoughts an additions.