I have been living with what looks to me as EM for four months. The local neurologists know nothing about EM, and do not seem interested in researching it. After studying the info on this site, and others, I have pretty much concluded that what I have is EM, but there are differences.
First, I am 87, and thankful that this affliction waited until now to manifest. Four months ago, something happened in my nervous system one day, and my right foot became red and painful, I had three migraine auras the first day, and ten within the first two weeks. I had been having around one migraine every several months up to then. Also, when my eyes were shut, I had vivid imagery of a great variety. As the days passed, the migraines became fewer, The imagery dimmed out, and the foot pains increased. I had been diagnosed with peripheral neuropathy several years before, and after a couple weeks with burning toes, was not bothered much. My symptoms seemed to match EM; foot became red with purple blotches when lowered, swelled a little, and felt hot. When raised, the foot became normal color and pain decreased. Besides the burning pain, the worst problem was the sharp stabbing pains into my toes and other parts of the foot. These attacks occurred and then stopped for several hours, then resumed. Nothing correlated with them; They seem to attack when they feel like it.. I see that most cases have bilateral affliction, and mine is only in the right foot. I feel I have a combination of neuropathy and EM. I have flare periods, and a week or so of mild discomfort between them. I went to a vascular specialist because I felt too much blood was gorging the flesh of my foot. Ultrasound tests showed that the arterial flow was normal. The vascular doctor thinks I may have CRPS, but it seems that the fact that my foot wants to be cooled, rather than warmed, shows EM traits. Anyway, I decided to go on with my life (using crutches and wheelchair when needed) and accept the pain rather than allowing negative thoughts, meditate a lot, and am not letting it impact my normal state of peace, happiness, and love. I am focusing love on all of you who have to deal with this painful problem. Pain is a part of life we must live with; suffering is not. Suffering comes with resistance to "what is". If you think my problem is not EM, please let me know.
Hello sammy, thank you for joining and sharing your EM journey with us. It sounds as if you have a very positive coping mechanism and approach to life that works well for you :-)
If you've not discovered it yet we have some 'cool tips' in our useful resources tab which may help when that 'ole foot needs a chillin'.
Wow! You are am amazing woman and someone to try to emulate! I'm so glad I read your letter on this Sunday after July 4th. There were plenty of fireworks in my right foot, believe me. Today I have things to do, and when I remember, many things to be grateful for...and your letter reminded that suffering is optional. I read a wonderful book called "Loving What IS" perhaps I should reread it...
You have helped me to work on my attitude today, and try to "stay in the DAY" rather than take my negative thoughts far into the future of "we know not what may or may not happen". Stay close to the group, if you can and keep us posted on your progress.
Greetings, Sammy. Let me second what music88 says about your being someone to emulate. It sounds as though yo already have techniques for mindfulness. I do, too, but I need to be reminded to USE them.
Your experience does resemble mine, though I had milder migraines and worse swelling. My problems began when I was beginning to heal from fractures in a knee and an elbow. My pain, swelling, and redness began in the left foot and lower leg but eventually spread to the right (though never to the same level). I was diagnosed with idiopathic peripheral neuropathy (28 months ago) and then later with EM (also unknown cause; 16 months ago). So from my perspective, your self-diagnosis of EM sounds pretty accurate.
Of course each case of this condition seems to develop in its own way, but my experience might be encouraging. The fierce, stabbing, can't-stand-up pain in my left foot lasted for a few days until I got a "cam boot" (used for several months) and has never been back to that extent. Various other pain locales have flared up and down, but on the whole, the symptoms of both PN and EM have been fairly steady for the past 18 months; I can walk without assistance and do most other things that don't involve a lot of standing or crouching.
Thanks for sharing your experiences and your strength in dealing with them.
Welcome, Sammy, and thank you for sharing your experiences and your positive attitude with us. :) I, too, have had trouble with doctors either not knowing about EM, and not being very interested in finding out about it. I, too, have been diagnosed with CRPS, but feel that I may have EM, for the reason you mentioned. I had a nerve block, and when it didn't work because it warmed up my feet, the doctors seemed puzzled, as if they hadn't been listening to what I was telling them. I have peripheral neuropathy, which the neurologist thinks is caused by uncontrolled rheumatoid arthritis, and I think that EM is an offshoot of that. Oh, well.
As I said, I really like your positive attitude. It made my day a lot brighter, and it made me want to emulate you. :) I hope you will visit here often, and be able to receive as much as you obviously have to give.
Melodie, CRPS is Chronic Regional Pain Syndrome, or what used to be called Reflex Sympathetic Dystrophy or RDS. It has a lot of symptoms in common with EM, but it is not the same.
I do find that the ambient heat and exposure to the sun both make the burning in my feet worse. I don't drink alcohol anymore because I take so much medication that just a little bit of it gives me an upset stomach for days, but I have heard from some people that alcohol makes their EM symptoms worse. I hope this was a little bit helpful!
I would attempt to communicate with you in French, but I only took three years of highschool French over 40 years ago, so I don't think I'd be very successful. :)
Melodie said:
It seems to be ... I'am french and i don't know what means CRPS ....
Is the ambient heat or exposure to the sun increases your burns as well as all the products vasodilators and in particular alcohol.
Thank you, thank you, Jules G, for pointing out this tab, and the "useful resources" tab as well. I guess I need to look around the site a bit more! I'm sure I'll find both of these resources very helpful. :)
Jules G said:
music88, if it would help you to 'stay in the moment' we have some updated links to relaxation and mindfulness meditations in the 'smilin thru' tab.
No problem about thinking I was a woman; my handle "Sammy" could be either gender. And from what I hear, EM hits more women than men. I guess women are supposed to handle pain better than men. I glad my input lifted your spirits. This challenge is a positive one for me, as I have been learning a lot about pain and myself, and want to share what works for me. Of course, with many folks having been living with pain for a lot longer than I have, I hope to learn a lot from them. What I am trying now is compression sox. I thought that they might keep some of the blood from piling up in my foot when lowered, and they seem to do just that. I wonder if others have tried compression?
Hello Sammy and thank you for sharing your information. I haven't tried compression because I can't even put socks on my feet without them turning bright red and burning like fire. Even during the winter months, I can only wear sandals without socks outdoors. I have had many strange looks when people see me with just sandals on my feet and it's 20 degrees outside. I am not familiar with CRPS so I don't have an opinion about that. Although I have not yet been diagnosed by a doctor, I am 99% certain that my condition is EM. I saw my primary doctor and he has had no experience with EM and therefore could not make a diagnosis. He suggested that I see a foot specialist but I'm uncertain as to what to do or how to proceed. Although I have had the symptoms for 2 years, I only heard about EM 3 weeks ago so I am quite the newbie (LOL) and still is discovery mode.
So many others have far worse symptoms than I do and my heart goes out to them. For 2 years, I have had only redness in both feet that has gotten worse over time. The redness flare-ups are brought on by heat and even mild heat causes redness and burning pain. The flare-ups, when they first started, only lasted 20-30 minutes. Today I have several flare-ups per day that range in severity from mild to extremely painful and very debilitating. I also suffer from mild neuropathy in my toes due to a spine injury and the EM symptoms started shortly after that injury. I'm assuming my EM symptoms and spinal injury are related but that's only my opinion.
There are a variety of medications that other EM sufferers are using that provide various levels of relief but not having been diagnosed, I'm unable to try any of them. For my spinal injury and related nerve pain, I am taking Gabapintin 300 mg. 3 times a day and it does help the burning in my feet a lot, depending on the severity of the flare-up. At bedtime I take 1 Gabapintin and 3 Tylenol but I am still not unable to sleep through the night. I recently discovered that if I keep my feet exposed (out from under the bed covers) and have the ceiling fan on high speed, I am able sleep better.
Again, thank you Sammy for sharing. I am so very thankful that I found this web site and the friendly support the nice people here have provided all EM sufferers.