[brendaingram]

Hey all,

I've been diagnosed with Small Fiber Peripheral Neuropathy and Diabetic Peripheral Neuropathy. I have horrible pain in my feet and they turn bright red, blotchy and/or purple several times a day.

Told my neurologist about the redness and asked if it was possible that I also had Erythromelalgia (which can be caused by small fiber neuropathy). He said that redness was also a side effect of PN.

I'm certainly not looking to add another dang disorder to my growing list but just wondering if you guys have some thoughts.

Brenda

[zygopetalum]

I'm a newbie and do not have the knowledge of people who have been doing this for a long time, I hope you get good response to your question because I've been wondering if I have it too.

All I've been able to find for secondary erethromelalagia is to treat the underlying cause ie SFN, and to try to keep your feet cool. Heat really triggers mine, I can't wear shoes in the house and I've been sleeping with my feet poked out from under the blankets for 3 years. Mine is better in the winter, cold doesn't trigger my symptoms like it does some here, its a relief. Trying to soak them in cool water doesn't work though, it hurts when they warm back up. Thats probably because its a vascular problem but I don't really know.
It seems like a lot of hot weather seems to make it trigger more easily, I can only imagine what you must be going through in Georgia. To me it seems like the more I can keep them cool the less likely they are to flare up when they are exposed to some heat.

I hope someone has some better info, I'd like to hear it too.
Zygo

[glenntaj]

--Erythromelalgia is sometimes considered a form of small-fiber neuropathy, in that it is thought to involve a hyperactive reflex in the c-fibers that subsume the sensation of pain and temperature. The mechanism is not precisely known, although there may be an excess protein trigger in some familial/genetic cases:

http://neuromuscular.wustl.edu/senso...rythromelalgia

[norahs]

Originally Posted by brendaingram

Hey all,

I've been diagnosed with Small Fiber Peripheral Neuropathy and Diabetic Peripheral Neuropathy. I have horrible pain in my feet and they turn bright red, blotchy and/or purple several times a day.

Told my neurologist about the redness and asked if it was possible that I also had Erythromelalgia (which can be caused by small fiber neuropathy). He said that redness was also a side effect of PN.

I'm certainly not looking to add another dang disorder to my growing list but just wondering if you guys have some thoughts.

Brenda

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.

[brendaingram]

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.

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

[zygopetalum]

Brenda I feel so bad for you. Mine is still there but seems to have improved to some extent with COPD med changes, before that it absolutely destroyed my quality of life for a couple of years.

We've probably been looking at some of the same sites, did you find the Norwegian Study and the Erythromelalgia Foundation? The latter has a forum, it costs a little bit to join and I don't know if the info would be worth it but you might want to look at it. (sorry, newbie hasn't gotten around to learning how to link yet)

Some of the things I've come across stated that EM may not be as rare as has been thought and incidence has been increasing, they said it was probably not recognized and under reported. It can occur with diabetic neuropathy and I saw some mention of it with co-existing Reynauds. I can only imagine the pain you must be in with your blood vessels alternately dialating and constricting.

I'm not an expert but I think it matters if you have Em as a componant of PN because some of the actual pain is due to vascular changes. I'm not sure your Neuro is doing the best job possible (?), some of the replies I got in 'no neurologist' thread pointed out that many of them are focused on stroke victims, etc. and I think that is likely true. Atlanta is a big city, do they have any large neuro centers? If you are serious about flying up Norah's Dr. might be the best but there is also a neuro center in Oregon. My niece moved back home (also Wn state but the dry side) after years in Augusta, her son is still in Georgia and she flew him up for some medical testing because she felt our area was better. I don't know if that's really true.

I know you are in too much pain to be told to "hang in there", keep looking for answers and help.

Zygo

[norahs]

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

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

[norahs]

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.

[brendaingram]

Originally Posted by zygopetalum

Brenda I feel so bad for you. Mine is still there but seems to have improved to some extent with COPD med changes, before that it absolutely destroyed my quality of life for a couple of years.

We've probably been looking at some of the same sites, did you find the Norwegian Study and the Erythromelalgia Foundation? The latter has a forum, it costs a little bit to join and I don't know if the info would be worth it but you might want to look at it. (sorry, newbie hasn't gotten around to learning how to link yet)

Some of the things I've come across stated that EM may not be as rare as has been thought and incidence has been increasing, they said it was probably not recognized and under reported. It can occur with diabetic neuropathy and I saw some mention of it with co-existing Reynauds. I can only imagine the pain you must be in with your blood vessels alternately dialating and constricting.

I'm not an expert but I think it matters if you have Em as a componant of PN because some of the actual pain is due to vascular changes. I'm not sure your Neuro is doing the best job possible (?), some of the replies I got in 'no neurologist' thread pointed out that many of them are focused on stroke victims, etc. and I think that is likely true. Atlanta is a big city, do they have any large neuro centers? If you are serious about flying up Norah's Dr. might be the best but there is also a neuro center in Oregon. My niece moved back home (also Wn state but the dry side) after years in Augusta, her son is still in Georgia and she flew him up for some medical testing because she felt our area was better. I don't know if that's really true.

I know you are in too much pain to be told to "hang in there", keep looking for answers and help.

Zygo

Zygo, your kind words and information have cheered me immensely. Thank you so much. I believe there is a large neurology dept at Emory Hospital - I will check into that. Re: visiting a dr. in WA, I'm always looking for a chance to see family in OR. Wow, just love that Columbia River Gorge!

The sympathy, empathy and concern I have found here amazes me...

These last few months have been horrendous. 8 dental surgeries - 5 abcesses/infections, a double hernia operation, and then on Jan 4th, 2011 I went in to have a pedicure and went through the roof with the pain. Podiatrist thought I had plantar fasciitis, had 4 cortizone shots, and a nerve block, plus had my feet bound for 2 weeks. Then had skin biopsy which showed neuropathy on 2/15. Been juggling medicines since then, as the neuropathy has worsened dramatically.

I was a fairly active person and my passion was golf. Now I sit most days with my feet up in the recliner or laying in bed. I have my own business but can't work with my feet down for more than a couple hours.

My husband is the most patient and understanding person, who is now helping me out with my company. He takes me to all my appts and is so wonderful (most of the time, like the rest of us!). My friends avoid me because they don't know what to say or do. I used to be the most positive, outgoing person and now I've become a dang Debbie Downer!

Anyway, things might be looking up - my dr. changed my meds to Lyrica (I'm titrating up right now) and it seems to be helping some.

Wow, this being able to vent sure is nice. People understand that I'm venting and not complaining.

[brendaingram]

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

Sharon,

All of your emails have been insightful and helpful. I'm going to follow up about the pain mgt. I'll talk to my primary care dr. whom I love and see what she advises. I agree I may have EM and Reynaud's too because my feet get so red and purple and then my feet (and hands) get really cold and feet turn very pale and blue almost.

You might get a kick out of this. Most of the afternoon I have been very cold, so I am sitting in a recliner, with these thick multicolored slipper/socks, a granny gown (which I NEVER wear, but all my jammies and sweats were dirty), and an old ratty sweater. I got out of my chair with my hair sticking out, and my hubby observed, "That's a really attractive look on you, honey." I was "figuratively" rolling on the floor laughing!!!

I have only soaked my feet once (with epsom salts) but I used warm (not hot) water. I will have to try with tepid water. But today (so far) it's a case of cold.

I am very interested in talking to you via personal email. I have no idea how to do that though. There is no hurry, cuz I'm still recovering from sitting all day Saturday for a special celebration.

Thanks again,

Brenda