I have hot flashes of my ears and nose 3 or 4 times a week since jan 2014. Only late in the day or in the evening. It lasts from 20 min to a few hours. Doctors are puzzled!
Also always when I do light exersize (like shopping) I get flares. I can hardly do anything anymore. I also notice that stress induces a flare. Doctors can't really find anything, I am starting to think that they think it is all in my head or something. But I have 100+ pictures of flares to prove.
My hands have been warm a few times, I was looking for anything to cool it down, eventually ice helped. I take Sertraline 25 mg a day for a few years now, could this be suppressing the flares in my hands/feet? Anyone with experience with only the ears and/or nose?
They thought about Relapsing Polychondritis, but are not finding any cartilage inflammation. I also have trouble breathing during a flare, and get very tired. My voice is hoarse too since a year.
Does anyone have any experience with this? I could really use some help.
I have EM mostly in my feet and hands, but I do get nose flares on occasion. And yes -- I have noticed that stress can induce flares. I try to keep my life as stress free as possible, but that isn't always an option.
My EM started at age 12 on my ears and cheeks. I am now 20. It has spread to my hands, feet, legs and now a little on my back. Yes stress is a big trigger. So is garlic and MSM. It is a terrible disease. I have applied for SSI as I cannot work. No meds have helped. I also have Raynauds. We have moved from NY to FL. I can deal with the heat here better than I could deal with the cold. Even here when the temp drops my Raynauds is bad. I wish I had good news for you, but I don't. Best wishes.
Thank you guys. Also thank you for the article Jon! Today I went to the rheumy and I presented the article. She doesn't know what is wrong with me, and she told me that '' I would just have to deal with this for the rest of my life'' :-( Can't believe it! Luckily I had the article, it is my last hope, she said she would look into it. I really don't know what to do anymore. Funny Ltwillians, I also have trouble with Garlic, I haven't heard anyone about this before! Also tomato seems to be a trigger for me. Twilliams and Thisgirlisonfire, how did you get a diagnosis? Was it hard? What do the doctors think about the ears/nose? Any tips for the ears/nose?
I used to be a picture of health over 1 year ago, I ran like 7/8 times a week. Now I can't even do simple choirs anymore. Something is just wrong.. Why isn't there a real dr. House...
I started with very mild flares in my hands for years. These were so mild I didn't seek medical attention because they wouldn't last long and only hurt mildly if you could consider it hurting at all maybe better described as uncomfortable. About 10 years later it started on my face and this was hotter and hurt more. I kept thinking I had a fever only my temp was never raised. A few months after this it started in my hands more frequent and very painful. It has spread over most of my body now. This isn't saying this will happen with you. Many people don't get worse or have it spread. I just wanted to let you know this because you are more likely to hear from those here that have gotten worse because it effects them more and they are more likely to come here looking for help where those that don't get worse are less likely to come online looking for help so please don't worry that you will get worse because you read here about those that do.
If your current doctor ends up dismissing you I recommend finding a new doctor and continuing until you find one that will. It is common for some doctors to just dismiss you when you have something they don't understand. It is great if you find one familiar with EM but not necessary just as long as you find one willing to learn about it and treat you.
Yes you are right. I think I will seek another doctor if this one is not working. Mads also gave me a list of some in my country. For me it started the other way around, first my ears, then my nose, then my hands.
One thing that I have learned is that doctors really don't know much :P haha! I used to have this idea about whenever you go to a doctor, they will fix things.. I guess I was living on another planet back them.
From ages 12 to 16 no doctor could tell me why I had this terrible burning on my ears and face. I went to my primary because I had bronchitis. I saw a physician assistant. Went she left the room I started a flare. When she came back I showed her. She said she knew what it was because she had seen it on a medical show. She googled it and said it was EM. I was then sent to Childrens Hospital where 2 neurologist an 1 endocrinologist had never heard of it. I eventually went to Dent Neurology in Buffalo, but no meds ever helped. Since I have moved to FL, I have an appointment with another neurologist. I try to be positive and avoid stress. I like temps of 75. I can't be too hot or too cold. Riding in the car can be difficult. I tire easily and sleep a lot. I do an internet business of selling vintage toys and make a little money that way. I have a very supportive partner and grandmother that I live with. I am grateful for them.
Oh that sounds nice :-) I am glad you had this assistant! How did you start an ear flare? I am thinking I should provoke one before the doctors appointment. Did you eat anything crazy, or tried heat?
Hi Alina This awful disease started in 2013 in my hands and feet, after a few months it simple went away. I February This year it came Back with a vengance more so in my hands, Arms, feet and Legs but also throughout most of my body. There is no one to turn to, my GP smile and said he dosn't know. Went to see a Consultant, he doesn'know and send me away for more blood test, and to go back in 2 months. I have had no treatment, does anyone know of treatment , I would love hear from anyone that have had any treatment that may have helped in even a small way, or even a Dr that may have some idea, would be very glad to hear from you. This has progressed so much I am never without pain especially at nights in my feet and Legs.
Kind Regards
Dee
Alina Delp said:
Hello Ellen.
I started with very mild flares in my hands for years. These were so mild I didn't seek medical attention because they wouldn't last long and only hurt mildly if you could consider it hurting at all maybe better described as uncomfortable. About 10 years later it started on my face and this was hotter and hurt more. I kept thinking I had a fever only my temp was never raised. A few months after this it started in my hands more frequent and very painful. It has spread over most of my body now. This isn't saying this will happen with you. Many people don't get worse or have it spread. I just wanted to let you know this because you are more likely to hear from those here that have gotten worse because it effects them more and they are more likely to come here looking for help where those that don't get worse are less likely to come online looking for help so please don't worry that you will get worse because you read here about those that do.
If your current doctor ends up dismissing you I recommend finding a new doctor and continuing until you find one that will. It is common for some doctors to just dismiss you when you have something they don't understand. It is great if you find one familiar with EM but not necessary just as long as you find one willing to learn about it and treat you.