I was excited to see another pic of red ears! :-) I went for a long time not knowing what was going on with me. At first I thought it was Raynaud's. My dermatologist told me it was an autonomic problem. My neurologist has lots of ideas what my underlying problems are. I have a boatload of autoimmune and neurologic diagnosis'. Here are pics of me turning red. I am not the only one.....right????
75-RedEars.jpg (27.7 KB) 76-VeryRedFeet.JPG (2.05 MB) 77-RedHand.png (1.24 MB)
Hi Wanderer, Well, you have my feet. legs and hands, but I don't have your ears (well to be honest, I am not sure about that as my hair covers my ears most of the time, I must check on that)! The only thing up to now is that my hands and ears don't hurt, whereas my feet and legs, where it first started are the worst pain I have ever had in my whole life and I have had quite a few major operations and have rheumatoid arthritis but they are nothing compared to this. Surely one day soon doctors will know what the people on this group do, or am I dreaming? At least at long last my GP has heard of it but he has only ever known of one case in 30 years of his profession and he is doing his best to help me.
Hi Wanderer, Well, you have my feet. legs and hands, but I don't have your ears (well to be honest, I am not sure about that as my hair covers my ears most of the time, I must check on that)! The only thing up to now is that my hands and ears don't hurt, whereas my feet and legs, where it first started are the worst pain I have ever had in my whole life and I have had quite a few major operations and have rheumatoid arthritis but they are nothing compared to this. Surely one day soon doctors will know what the people on this group do, or am I dreaming? At least at long last my GP has heard of it but he has only ever known of one case in 30 years of his profession and he is doing his best to help me.
Sorry it ended up being there twice I don't know why I must have done something wrong.
I have red and swollen ears to go along with my red and swollen feet and hands. I also have some autonomic issues and it is all part of small fiber neuropathy for me.
For me redness ranks most often:
#1 - Hands
#2 - Feet
#3 - Ears
#4 - Knee Caps
I sure know it when my ears are red. They are HOT!
sheltielife said:
Hi Wanderer, Well, you have my feet. legs and hands, but I don't have your ears (well to be honest, I am not sure about that as my hair covers my ears most of the time, I must check on that)! The only thing up to now is that my hands and ears don't hurt, whereas my feet and legs, where it first started are the worst pain I have ever had in my whole life and I have had quite a few major operations and have rheumatoid arthritis but they are nothing compared to this. Surely one day soon doctors will know what the people on this group do, or am I dreaming? At least at long last my GP has heard of it but he has only ever known of one case in 30 years of his profession and he is doing his best to help me.
I wish I had a better memory! I was going over paperwork earlier and found one giving me the diagnosis of small fiber neuropathy......but I have soooooooo many more and varied diagnosis' :-o
jen said:
I have red and swollen ears to go along with my red and swollen feet and hands. I also have some autonomic issues and it is all part of small fiber neuropathy for me.
Hmmmm.....I hadn't thought of my red kneecaps being part of this. I thought it was from arthritis. I will pay better attention now.
Deon said:
For me redness ranks most often:
#1 - Hands
#2 - Feet
#3 - Ears
#4 - Knee Caps
Hi!
I also have it in My fingers and feet but I wonder, do you have itch? My arms and hands also itch at the same time.
And what do they do ta se if you have any small fiber neurophaty problems, I also have diabetics but never problem with that before they burn me on feet care.
Regards Lena
Has no-one mentioned noses? I have always been embarrassed by mine which went red with Raynauds and redder still and swollen with EM. A cheeky 10 year old in school asked if I drink gin, ‘because my mum says that drinking gin makes your nose go red.’ Hard to disguise as it still looks swollen and red under make-up:(
Yes! My ears flare! And my nose! Also my feet, up to my knees and my hands. It is crazy and it hurts!
It's a combo of burning/itching.
Lena Lundberg said:
Hi!
I also have it in My fingers and feet but I wonder, do you have itch? My arms and hands also itch at the same time.
And what do they do ta se if you have any small fiber neurophaty problems, I also have diabetics but never problem with that before they burn me on feet care.
Regards Lena
My nose turns bright red, too :-(
Nel said:
Has no-one mentioned noses? I have always been embarrassed by mine which went red with Raynauds and redder still and swollen with EM. A cheeky 10 year old in school asked if I drink gin, 'because my mum says that drinking gin makes your nose go red.' Hard to disguise as it still looks swollen and red under make-up:(
I Wanderer.
I have it all over my face and neck including my ears and scalp even at times up over my eye and eye itself. Not to mention hands ,feet ,arms ,legs , chest and often some of my worse pain my knee caps too! Way to many pics to post but you are welcome to go to my page and check them out.
I’m sorry you have to go through this but you are not alone in this. I wish I could say it was just me but at least we have each other for support.
Take care
Dear Wanderer (and everyone),
Sorry been AWOL for few days with this damn burning :(.
Auricular and facial EM is less common but several of us do have it. . I also get scalp flares with the facial flares. My eyes flare and I have mouth flares (burning mouth syndrome). I have lost about 75% of my hair now despite using ice packs and fashioning a type of cooling cap. Facial flares are very similar to Harlequin syndrome but without the sweating.
Facially, I have found antihistamines,topical steriods and ligocaine cream(sodium channel blocker) the most helpful along with careful icing/cooling and biofreeze gel. I also minimise triggers - heat (or cold) , stress, exertion, fatigue and foods stuffs such as spicy foods, deadly nightshade family, and stimulants such as coffee or alcohol. Changing lifestyle- ie: staying out of sun . Use cooling tactics . I did send you link upon arrival its, http://forum.livingwitherythromelalgia.org/forum/topics/cool-tips. I find a damp cloth over my ears, nose, face and a full blast under the fan often helps take the 'burn' out. I am also on a plethora of other drugs and have infusions but targeted treatments for my face are as stated.
In terms of EM, most members advocate a polypharmacy approach as EM symptoms tend to be better managed as separate entities. Whilst management is mostly a case of trial/error to find what works best for you ,specific firstline therapies are commonly given.
Please ask any questions. Oh BTW - you look lovely- not red :)
God bless
I often have painful flares of my ears and face. One of the articles linked by mads mentions the combination of aspirin and paroxetine as an optional therapeutic for EM and RES. Has anyone tried paroxetine? If so, any side effects?
Hi Viking,
Best idea is to write a discussion post asking if anyone has tried paroxetine. We can share it out to members and get you some good varied responses.
Ill answer you myself later ;)
x
I am too tired to read and write tonight. I went to the doc and was put on a Medrol dose pack today for myasthenia gravis. Soooooo wiped out. Thank you everyone for your replies :-)
Hi Nel,
I’ve had EM for 15 years now on my hands & feet. But, this winter it started on my face which included my nose & ears. But, strangely, tonight it was just my nose that was red & burning!