For several years now Ihave had issues with the typical EM symptoms in my hands and in the last year or so in my feet. I have not been diagnosed yet, we moved to South Carolina almost a year ago from Alaska and since then my symptoms have tripled. So I am trying to get enough reaserch for my doctor on EM so maybe she can help me. However my question is more about my son for a few years now every few weeks he will come to me complaing about his ears being hot. In short they get red and hot just like my hands do. Could it be possible that he has EM that only affects his ears?
Hello Tracy.
It is entirely possible to have it only in your ears. Is it common? no. Possible? yes. I have found EM effects everyone a little different. I get it all over my body but not usually the whole body at the same time. I have periods where one or two body parts give me a hard time then suddenly it is a different body part and the ones I just had are fine. For me my face usually has problems at the same time as my ears but I have had plenty of times that only my nose will flare! The rest of me is just fine but Ouch my nose burns!
I would take pictures of his ears as well as your symptoms. Keep a diary of symptoms ..what makes it worse ,what makes it better , when and how often is this happening. Then print out some of the research papers you can find here through links on some of these posts and bring every thing to your doctor and discuss it with him/her.
I am trying to remember who had the great idea of printing out the pictures not just showing them on your phone so I can give credit where credit is due but at the moment I can't remember. ( you know who you are...Thank you) . That way they can see them better and keep them in your records for future reference.
Just be prepared your doctor may never have heard of it but if he is willing to learn about it so he can assist you and your son that is all that matters. If He/ she isn't willing to listen and learn then you may have to find a new one if necessary.
I wish you the best and I am so sorry your son has to go through this too.
Take care,
ALina
Tizzy, if I remember correctly it did happen a couple time before we moved. However I know he has complained more about it here. I too have noticed a huge change since we moved. It has mostly happened at night and I have some rice packs that are covered in material and keep in the freezer for accidents so he will usually grab those and put on his ears. The funny (but not so funny) thing is my mom has told me that she use to have problems with her hands as well but she also said she does not have problems with it any more. So I hope mine and my son's go away as well.
I am wondering the same thing about MY son! Whenever he takes a shower, his left ear gets TERRIBLY red, feels warm to the touch, and he says it feels uncomfortable, but not painful. It doesn't swell up as my feet and hands do, but still, I wonder..
Hi Tracy. Have you seen this discussion yet?
.Attention all Em'ers. XENON research study - free genetic testing
It should be on the first page maybe second page if you see this post soon enough.
I just thought that because you and your son both seem to be having EM symptoms it might mean this could be a genetic cause for both of you. It still may not but 2 in the family makes for a stronger suspicion.
It is of no cost to you to fill out the questionnaire and if they accept you they will send a saliva sampling kit to you and your son and they will test for genetic markers they think could be linked to primary EM. It is just another way to try and get some answers for you.
I have applied and I was accepted even with no other family members having it just based on the fact I have no known cause. I hope this helps. It might just offer up another piece of the puzzle!
Take care,
Alina
I get flares in my ears a couple times a week, usually in the late afternoon or early evening when my office gets a little warm. They (or sometimes just one ear) get red and hot, though they are not painful. From what I’ve read, red ears can be caused by a number of things, including EM, but also food allergies, relapsing polychondritis, and other things.