Does anyone else in this support group have this condition in their face and ears? Have you found any treatment that's helped? I know having it in your face/ears is pretty rare but not impossible. I just want to be able to know if anyone can relate to it.
My brother has it pretty bad in his face and ears. We always know when he is hurting because his ears and cheeks turn
rn bright red. He has found nothing that helps. Only steroids help a tiny bit and he can't stay on them long.
yes! i have been helped by taking a Bayer low dose aspirin every morning.
look me up on this string and you will see some of my previous posts and the responses i received. i still completely have the condition, but keeping my body temp down helps too.
Yes I have it in my face and ears and also chest as well as hands and feet,but have found nothing thats works
I think I do too but all I usually do is hold a cold cloth to my face until in passes. It’s usually only the right side of my face that’s the problem just as its only my right foot.
Tina
I also have it on my face and ears; always have. What I mean by that is since this disease first appeared it has been in my face and ears. It doesn't bother me as often as my hands and feet but they both do burn quite often. My biggest worry is that I am now feeling similar burning down into my throat and in my eyes. My doctor is concerned it is related to EM but because she doesn't have much experience with EM (no one except me) she doesn't want to say for sure. Has anyone ever had or heard of anyone with EM affecting these parts of their bodies?
I haven't found anything that works either. Not giving up though, there has to be something right?
Hi guys i have it in my face ears all i have found that helps are cool compresses. I also have it in my feet legs groin underarms and hands i bought a cool pad single bed size and keep it in the fridge its heaven it doesnt last all night as i heat it up so fast think another might be in order but it beats trying to get some sleep lying on the shower room floor with water spraying were i need it i have a medical on the 9th may to see wether im able to hold down a full time job have to say im worried about it as since the the disabilty laws have changed in the uk people with terminal illnesses have been deemed fit to work (whats this called work till you drop) so as what we have is so rare i have a feeling when i go it will be like talking to the wall and me trying to plead my case and hope it doesnt fall on deaf ears or i will be classed fit to work and have all assistance stopped hope everyone stay well or as well as we can be xx
I have it in my neck and I currently use this fan: http://www.amazon.com/Small-Fan-Mini-Air-Conditioner-convenient/dp/B002F8IFV6/ref=sr_1_4?s=electronics&ie=UTF8&qid=1335889126&sr=1-4
You can wet and insert a sponge so that it acts as an evaporative cooler. Can also set it on a desk in front of you so you don't have to hold it.
John, I have not had opportunity to share my story. I am a 51yo female who had the onset of EM just this past October {2011}. I have always had Raynouds, at least I was told that since my mother took me to a dermatologist at about age 11. The EM symptoms started out with pins and needles and numbness in a few fingers....and over months of progression. I know have it in both feet {sometimes including my knees}, both hands with it at times moving up to my right elbow AND now I have it across my face and in both ears {although it is not as persistant as the extremities. It has not left since arriving and I have flares several times a day..some days almost constantly depending on the temperature.
I am typical in that I self diagnosed , I was an RN many years and am an avid researcher. I shared the information with the primary doctor, the neurologist, the neurosurgeon, the vascular surgeon. All were perplexed, bewildered etc. I know we have all been there. But when I was able to identify it..they all agreed that it was Raynouds and EM. I had been seeing a nurse practioner at a Dermatology practice and no offense to her..she thought it was "hand in bucket syndrrome". Of course I knew it was much more than that..on a follow up visit for some minor skin cnacers..I made sure to schedule with the dermatologist. She came into the room with medical student in tow. As I explained what had been occurring..and demonstrated for her..as well as sharing pics and videos of myself. She confirmed the diagnosis. She had done her residency at the Mayo clinic and had seen 4 or 5 cases including one where a woman reacted to fluorescent lights. She stated I had the most unusual of the unusual ..my skin changes color with positioning in a matter of seconds. A thing that had the vascular surgeon calling me an Enigma..great LOL! I would have to say that besides the rpid color change what the rheumatologist and the Derm seem most interested in..is the EM effect of my face and ears.
Anyway after reading posts her..and prior to seeing the dermatolgist I assked my primary to start me on amitriptolyine. It did seems to take the edge of a bit..but in 3 weeks I plumped up 10lbs..and the dry mouth was intolerable. ASeveral days ago I began phasing the dose of amitiryp down and have just started on neurotin. I will get to my full story in the next few days {I hope to anyway}. At this point all I can say is the face and ears..though they flare the least..seem to be very unusual and no specific treatment for them.
I do not know if my EM is primary or Secondary {most everything has been ruled out}. but..Oh..at times it is beyond excruciating, like Freddy Krueger showed up in my dreams to pur a bit of molton lava on me.
Thank you. I look forward to being more active.
CindyStyle
near Lexington, KY
I have had a sore ear for a couple of months. Cannot feel a lump but hurts like there is one....anyone else symptoms?
It is noticable in my feet, legs, hands, back, chest, and face...progressed over the years, originally started in my feet, 16 years ago.
I get the same symptoms on my scalp as I do on my feet and hands. I hope to be seen at Stanford soon for a "actual" diagnosis. The only thing I can do is stay cool, really cool. It is never over 71 degrees in my apt and 69 better. Sometimes I use and ice pack on my neck, carefully of course but I also have a ruptured disk there. I also keep my hair up to help keep cool. I find I sweat a lot but mostly my head?? I can relate!
@ Binglover, my ear has also become very sore. It is very red and burning hot and if I even brush anything against it or barely scratch it, it hurts and also becomes even hotter. My symptoms started in my 2nd trimester of pregnancy with twin girls. I got shingles and from that point on, I developed a severe, hot burning and red pain in my face and ears. It seems like it's more on the right side of my face and right ear. All doctors have been very skeptical as to what it is but I am seeing a neurologist at the moment, who is sending me over to The Neuromuscular Clinic at the University of Colorado to get a second opinion on Erythromelagia. I'm pretty certain it is this because it seems to match more than any other condition out there. I have trouble with even doing any light cleaning, bending, any light exercise, being around any heat or sun and of course, cool packs and fans make my face feel much better. Usually my house is at about 67 degrees and when i was pregnant it was so bad, I had to set my thermostat at 57 degrees!! Cold I know. I think it has been better since being pregnant but I still have it everyday. I am currently on 90 mg of Cymbalta and if that doesn't work, on to something else. I have tried numerous other drugs, incluging gabapentin. Anyway, thanks everyone for your stories. It's really nice to know I'm am not the only one out there with it in my face/ears. :)
I am seeing Dr Graham at the Neuromuscular Clinic at the university of Colorado for my em he is a great doctor and is willing to go above and beyond to help you in every way possibly good luck
Just curious, especially after reading all of these posts, why most of the research make it sound like it is 'rare' to have symptoms in any place other than the feet and hands? In fact, when I was trying to find out why I was having all of these symptoms, one of the articles mentioned the burning in the feet and hands but also mentioned that 'although rarely' it was felt in the ears. It was after reading that statement that I knew I must have EM. My ears get so bad there is no way I can wear my glasses and hurts to even have my hair touch them. Just seems strange that the research I have found makes it sound like the majority of us with this disease only feel the burning in our feet and hands.
Yeah, I have it in ears when stressed and a lot at night on my cheeks! Only thing that helps my cheeks is having a cloth with cold water on it, good relief and before bed I throw cold water over my face to prevent! It doesn’t bother me like my feet and hands though!! Thank goodness, but sometimes burning on my cheeks causes light headed ness.
The eyes, yes. I have it in my eyes and actually have nerve damage in my eyes and the nerves are waring away. I had to get an op on my right eye as this ulcer appeared on my cornea? And I now have a untreatable scar on it. During the op they noticed the nerve damage and I personally think its EM related as sight has always been okay before EM first properly showed 6 years ago. They said o glasses, contacts or eye drops would work. Mabey worth going to a proper eye hospital and get an eye scan.
Lauri said:
I also have it on my face and ears; always have. What I mean by that is since this disease first appeared it has been in my face and ears. It doesn’t bother me as often as my hands and feet but they both do burn quite often. My biggest worry is that I am now feeling similar burning down into my throat and in my eyes. My doctor is concerned it is related to EM but because she doesn’t have much experience with EM (no one except me) she doesn’t want to say for sure. Has anyone ever had or heard of anyone with EM affecting these parts of their bodies?
I haven’t found anything that works either. Not giving up though, there has to be something right?
Most of us here seem to have severe forms of EM, so we could be a distorted sample. It would be very interesting to combine our group and TEA (some like me are members of both) and do another survey, to see where our symptoms occur, how often we have flares there and where our worst flares occur.
I would guess that most people who have mild EM only get it in their feet and perhaps the hands. The way the disease works would make that likely.
I would see if you can find another doctor who does know about EM, just to check that there aren't any problems that are causing this pain. I really hope that they will find something to help it.
Lauri said:
Just curious, especially after reading all of these posts, why most of the research make it sound like it is 'rare' to have symptoms in any place other than the feet and hands? In fact, when I was trying to find out why I was having all of these symptoms, one of the articles mentioned the burning in the feet and hands but also mentioned that 'although rarely' it was felt in the ears. It was after reading that statement that I knew I must have EM. My ears get so bad there is no way I can wear my glasses and hurts to even have my hair touch them. Just seems strange that the research I have found makes it sound like the majority of us with this disease only feel the burning in our feet and hands.
For a few years I've been getting flushing that includes my ears getting very red and hot, but I'm not getting the nerve pain in my ears yet. But worried that I'm headed in that direction. I've had EM in my feet and hands for about 20 years.
I've heard on another group that some have had some success for the ears and face with the following drugs (not all together): Maxalt, Azithromycin, Roxicodone (for severe episodes) and Treximet (PRN, not daily). Also that any antidepressants or St. John's Wort may make it worse or some blood pressure meds, but of course that may vary from person to person.
The flushing in my face and ears (and all over flushing) has decreased since going on mast cell activation treatment which is Zantac 150 twice per day, Zyrtec twice per day and Gastrocrom 100mg/5ml four times per day. One doctor prescribed double that amount of Gastrocrom for me, but I'm trying the lower dose first. The treatment seems to keep me feeling a bit cooler in general, so I don't flush and get the EM in my hands and feet as often or triggered by moderate temps. Seems to have lowered my temperature threshold a bit, and also helped with my GI issues a lot. But I'm only been on it for about 5 weeks, so not sure of long-term improvement yet.
Thanks for all your info Kentuckian!!! Greatly appreciated!!