Hi all
Just wondering if anyone else has experience with face and neck flushes?
I seem to now also be getting very red cheeks, face and neck. Comes and goes. Also red ears.
(This is on top of the usual feet/hands burning)
If you do, is there anything you used that helped cleared it up?
Thanks in advance,
Craig
Hi Ocker,
Yes, i get flushes or flaring of face, neck, ears and scalp. My EM started in my right knee, then feet etc.working its way up my body rather like a fungus spreading..I had very acute onset(2-3 months), which has now remained completely widespread and chronic(8 months now). Im struggling.really struggling!
Most research states EM is progressive. To help minimise - very difficult and very much trial/error . Depends what you respond to- all of us need an individualised polypharmacy approach. I responded moderately to lidocaine so 'theoretically' my EM is linked to sodium channel blockers or analogs of such like mexilteine. Other folk respond to serontonin antagagonists. I have listed things that i have tried with/without luck in my profile section. This is an awful thing isnt it. Do you know what type of EM you might have? Mine is primary, idiopathic, God bless. Please pm me if you wish to offload/chat about symptoms etc.
Hoping you have a 'comfortable' night as possible
mads
Hi mads
Thanks for the reply. Wow I'm sorry to hear how bad you must have it. I find its a real play on the mind - and I'm only a newbie, about 3-4months in on a much milder case.
I don't know what kind of EM I have at the moment... I mean my doc thinks idiopathic... I have had full bloods a couple of months ago and they came back normal - like everything else. The Dermatologist and Rheumatologist are just giving me meds... I have a repeat of FBC and other autoimmune bloods due by about the end of the week. My Rheumatologist doesn't expect anything to come of those.
I'll definitely have a look at your profile. Thanks again.
Ocker, I too have this occur frequently.... EM can hit me in the face, ears, and chest as well as arms, hands, feet, legs. Unfortunately I don't know anything about pharmeceuticals for EM, my doctors have only suggested aspirin, which I cannot take for other reasons. I'm interested in learning more about possible meds for this condition. I do keep feet elevated and try to stay as cool as possible.
take care,
JoAnn
Hi, I get flares mostly in my hands, feet, face and scalp. Funny thing is, after a terrible scalp flare I will then get psoriasis? My neuro has me titrating up on Topamax, so we will see how that works, but I feel a bit like a zombie. I have been tested by a Derm, Rumey, and Neuro who all say your test show nothing so it must be idiopathic. But they say it in a way like...if you have it or course :p
Be pain free everyone, michelle
Mine started with my face and ears. I had that for about 2 years. I was sure I must have Lupus due to other symptoms but doctors just said I had red face syndrome and red ear syndrome. The ears are so touchy sore that just my hair touching the tops of my ears feels like my ears are raw skin. When my cheeks get real bright which is every day, several times and sometimes constantly for days, I look like a clown. I get so explosively hot and my head sweats too. My feet started about 2 years ago. My feet also go numb due to Spinal Stenosis but they are sore. My big toes and the foot just behind the big toe hurt so bad and are so sore. The soles of my feet are deep red even when the hot feeling eases off. The only help I've had with my feet is to rub with a menthol liniment to give a false cool feeling and then turn a fan on them. Wetting my head with cool water sometimes eases the warmth of my face but not my ears. Today it felt like the heat was attacking my spine. This is just awful.
I've been having persistent redness and occasional episodes of heat in my face - mostly nose and upper cheeks. We thought it could be lupus but my ANA test was fine. I suspect it may be rosacea with an EM flare here and there. I've been using only products for sensitive skin (helps a little as I do have dry, sensitive skin) and wearing makeup to cover the red when I go out. I haven't tried any drugs.
Hi LibbyK
Thanks for the post. Sounds very similar to me, although I also get this redness/heat in the forehead ... also as well... checked my ANA (neg) but having some more tests coming (C3/C4/DsDNA/DAT/Anti-CCP) which are not just Lupus focused.
I was thinking the same thing about rosacea - as to what is EM and what is rosacea...
I’ve had neck and facial flushing for over three years now. There seems to be no way that I know of to get rid of the flushing. It does come and go. What I do take daily to help for the pain is Gabapentin…it works great for me!!!
Now when I was in my 30’s and I got Rosacia I used Metrogel that I got from my Dermatologist and I still use it and that helps a tiny bit for burning along with medication.
To Clarissajo you should ask your doctor about trying to use Gabapentin for your EM. There’s different elvels of the medicine you can take for the pain. I’m up to the max amount of 3,600 mg some can take less… ask your doctor it can do wonders and I’ve not really had any side effects other than sometimes I may get tired but it beats the pain!!!
Thanks Mary, I currently take Lyrica (pregabalin) which has similar effects. I didn't realize that it was so similar to gabapentin until very recently.... apparently a lot of people take either gabapentin OR lyrica, and usually choose gabapentin because it's less expensive. My neurologist is prescribing the Lyrica plus Cymbalta because that combo is very effective against my fibromyalgia pain, and also she says the Lyrica helps prevent seizures which I have a tendency to have. I will ask her about the gabapentin though, if it is better for EM pain.....? I should also bring up some of the medications mentioned by mads in a previous comment. Maybe I just need a higher dose of the Lyrica?
Thanks again!
JoAnn
Hi Craig. I too have flushing in the face and chest but I don’t like to call it flushing I like to call it burning! It only comes with warmth like my EM and only goes when cooled. At first the doctors thought it was just a skin rash like rosecea but it burns like a bad sun burn and very hot to the touch. Like Gaga said just a gentle touch like a hair touching it hurts. Ouch! Take ace and stay cool
Alina
I have been reading more about the face flushing after seeing an endocrinologist...
She gave me some tests, like the 5 hiaa urine test... wanted to check for carcinoid syndrome because the classic symptom is face flushing... will see what the results are shortly.
Its been a while but as a follow up to this thread:
Had the '5HIAA' and 'chromogranin a' tests that came back ok.
So it seems that carcinoid syndrome is out, which is good of course.
The burning cheeks continue. Like tonight for example - very cold night. Feet are fine but cheeks are burning...
Ocker said:
I have been reading more about the face flushing after seeing an endocrinologist...
She gave me some tests, like the 5 hiaa urine test... wanted to check for carcinoid syndrome because the classic symptom is face flushing... will see what the results are shortly.
I have burning in my neck and face. Started about eight months ago. It is very bad at night. I keep a cooler beside my bed and use a gel lack wrapped in a dish towel to cool my face. I tried aspirin when I was first diagnosed and it helped a bit when it I took it at 4 am when the pain was at its worse. I could only tolerate (does was super high: 1200 mg’s) for five night befor my stomach pain put a stop to that. I have secondary EM and my doctor hopes that this short trial with aspirin shows that I could benefit from lidocaine infusion. I hope to get that in the Fall. It was my pain doctor who diagnosed me. I think roseaca and EM are very different, so shouldn’t be hard to differentiate for a medical doc. My pain doc isn’t an Em expert, but she could diagnose it. My GP thought it was hot flashes from menopause. Even I knew that was not the case. Hot flashes (and roseacea) do not hurt!!!
I see a neurologist today who is supposedly the only person in town (Vancouver) who knows anything about EM. Here’s hoping she can help. First, I have to get the dang EMG testing over with prior to the consult today. If I have anything helpful for to report, I will post, for sure.
Take care, all.
Thanks for the message Flaming.
Mine is not that bad, it is uncomfortable and seems my whole face flushes. I have had tests for carcinoid syndrome but they don't seem conclusive and wonder if anyone else did/experiences?
I'm not sure if its something like that or dysautonomia - the autonomic system playing up...
Good luck with your consult.
I have the facial stuff too (and ears). I have not found ANY topical to be effective.
A long time ago I noticed that if I would exercise intensely, I would get really pale + blue lips, and then 3 hours later humongous facial burning + redness. I stopped exercising intensely!
Then one day it decided to happen every night.
What I notice is that if I stand up, the face flaring improves quite fast. My nose can go from swollen/burning to ice cold in a matter of seconds! I think this is similar to the idea of “elevating” feet/hand flares (which I can have rapid improvement in matter of seconds). But standing up for my face might just be a setup to when I eventually sit down again.
Lying back is impossible for my face/ears without intervention (a sedating drug, recent botox injections)
I got lost in the rosacea woods with doctors for quite a while and what I would recommend to anyone else is saying words like “burning” as opposed to “flushing” to doctors (assuming you are burning!) I even had expensive laser treatments which made the burning worse if anything, but doctors made it seem like it was the only option left (when I was in still being treated as rosacea)
I’ve found the warmer I can force my nose during non-flaring times, the less intense the nightly flares will be. This is true for my fingers/arms as well. But in doing this sometimes I accidentally provoke a flare 
Anyway would be interested if anyone else with facial symptoms reacted badly to rosacea lasers… I was never told increased burning as a potential side effect. And if anyone has concomitant migraines…