I am new here and haven’t been officially diagnosed but i’m sure EM is what i’m dealing with. I started having full on, intense facial flushing three years ago. I would flush randomly, or when bending over, after a shower, with warm rooms, sun, etc. - was diagnosed with undifferentiated connective tissue disease and started plaquenill back in March 2014. The Plaquenill helped a lot with my fatigue, joint pain, and even the flushing. I only flushed with 90+ degree heat or when standing in front of a heat source like a fire, or when nervous. But the flushing wasn’t as severe. A dermatologist said that it was probably rosacea along with connective tissue disease, fast forward a year, i started to get bad muscle pain, trigger points, and that lead to bad TMJ. The only thing that helped the TMJ was acupuncture. It brought my pain from a 10 to a 3/4. I still have tension daily - but it only bothers me for couple hours a day vs. non stop. It never truly goes away. Following this, i started getting burning pain along the jawline. I never had redness with this - wasn’t a flush, just burning. Considering it was my lower cheeks, jawline, i wasn’t sure what it was but went to the dermatologist and it was probable dermatitis. I have rashes all over so dermatitis wasn’t a term i wasn’t familiar with already. I don’t have dermatitis lesions on my jawline, but i have a sandpaper like texture of the skin there, which developed over the time i started having the burning pain. Next nose flushing and flushing and burning of my toes - such as when exercising or when on my feet for long periods. The only thing that helped that was elevating the feet. Now i have hot face/head/ears. I feel heat all over - and i get overheated easily - and just sporadically sometimes. I don’t have to be flushed to feel the heat. It’s there even when the rest of me is chilled. I have poor circulation in my hands (most likely due to carpal tunnel) but my hands are always blue/purple, whereas the rest of me is HOT. One thing that has been bothering me and that has progressed is this flushing of my ears and jawline that comes shortly after i lie down in bed each night. It’s SO painful and it gets so hot - the heat is so intense, everytime it happens i would rather be dead than deal with the pain. The only thing that help is getting up, walking around and icing my face/ears. I don’t understand why lying down causes an intense flush? Thoughts? I go back to the neurologist on Tuesday. I already brought this up to him in November but never got a diagnosis and was given 20mg of noritriptyline which did nothing but make me feel tired even after getting 8 hours of sleep. It also did weird stuff to my heart rate.
Just a thought it might not be the reason why you flush more when you lie down but have you had your blood pressure checked recently? Lying down the blood will get to your head quicker than standing and if it’s high then it will get there even quicker.
As for the noritriptyline it’s a known fact it puts your pulse rate up is this what is happening to your heart rate?
I also have facial flushing & ear flares and have noticed when I lay down at night I will experience flushing & hot ears, mainly my left ear is affected but mine tends to subside after about ten minutes or so if I lie still. I have always put it down to the fact that it is the change in postition and the increase of blood flow to the head, Just a guess, Sometimes I use a cool damp flannel draped over my face in summer
Do your face and ears feel hot throughout the day, as if it’s getting so hot you feel it could flush but it doesn’t, it just gets hot and uncomfortable like your skin is cooking? And do you ever feel heat sensations in your head, along the temples and top of head? Occasional sharp heat sensations that last only second through your head / almost like a bad headache but only last seconds? I feel my heat sensations can be helped once I get up and move around Sitting for some reason brings it on more.
For me, the best thing was those cooling scarves that when wet, are filled with a gel, and they are continually cold on the outside. Something about them pulled the burning feeling put and away better than ice, which is actually has the potential to have long term problems l. And it is so soft that I could sleep with it against my skin. When the scarves are dry, the filling is more like a sandy crystaline substance. But get it wet and they swell up into something wonderful. The cooling type is called evaporative. The ones that puff up the most are the best. Sometimes the ones I buy don’t have enough filler, they don’t puff up a lot, and so I open them up, add more crystals, and sew them shut again. I haven’t bought this exact one but it looks like the right kind:
And the crystals I add are these, and keep in mind, a little goes a long way:
I also sometimes have terrible burning that is not always accompanied by the redness. Then sometimes the redness is bad too. Sometimes it seems the non red burning is worse… but I found that sometimes that is helped most by the things that neutralize the burning chemicals that are found in the skin biopsies of people with EM, like capsaicin. Turmeric works but dyes everything yellow, and I can’t remember the name of the thing that works but does not dye things yellow. Do some research to make sure it is safe around or near the eyes, of course.
Good luck, and be wary of ice… I’m sorry. I know the allure too. If you do use ice, at least dampen the cold with something really thick so cooling comes through at a lower temperature. Like really thick chenille socks put around the ice pack, or something. My specialist told me that water cooled in the fridge was OK, so I keep squishy water bottles in there and pull them out and use them for cooling.
These are some things that help me the most, I hope you find things that make the suffering more manageable, and if I can help somehow, feel free to message me.
My face and ears feel fine when I wake, usually from late afternoon onwards I start to notice the heat in my face. It feels boiling hot under the skin and like someone has sanded my face, sometimes it feels as if my face is melting, almost like a cold sweat but I wipe my face and it is dry, I feel the burning to the tops of my ears the worst, the lobes feel normal, my face also itches mainly the cheeks, forehead and around my chin. The texture of my skin has changed it feels rather rough, My scalp so far feels normal. I don’t get any sharp heat sensations in my head like you describe but do get intense headaches across the eyes in the summer that can last for days. I started experiencing facial flushing last spring, ears the year before, my EM is now widespread & has slowly progressed over the last thirteen years
interesting - my skin texture along my jawline area where my heat senastions/burning are most changed also. I too have sandpaper like texture. There are actually tiny bumps and it’s almost as if no pores. I asked the dermatologist to biopsy but they say my “lesions” aren’t large enough to biopsy. Apparently they can’t just take a punch biopsy and look at the layers. I don’t have big enough lesions so i’m at a loss. They made me try two different antibacterial topical and an anti fungal topical and all they did was irritate my skin more. Needless to say, doctor’s haven’t been much help. Since coming down from noritriptilyne from 20mg to 10mg - to wean off, i started to get burning all over my body. At first it was only in my feet, not i have it up my legs, stomach, arms, back, pretty much everywhere. Not sure if it was the noritiptilyne or what but this is just wonderful I can’t catch a damn break. I continue to spiral down and my diagnosis is dysautonomia which is purely based on the 15 minutes the neurologist gave me and he still didn’t listen to what i had to say about symptoms. Just keeps telling me i need to go on immunosuppressants.
Yes, it can be very disheartening trying to find answers to our many symptoms. I have lost count how many Doctors I have seen over the years. I was finally diagnosed with EM in 2013 when I saw a Locum Rheumatologist that happened to be familiar with EM, Unfortunately this Doctor left for another Hospital so it was back to square one, I am due for my third nailfold Capillaroscopy soon, I have had a few tests & all my blood tests results have been normal or negative. My Rheumatologist has suggested I need to see another Doctor who is familiar with EM. I hope you find some help and relief soon
I would be careful using ice because we are burning so bad we might not notice tissue damage from the cold. I have been tempted to use ice but I know that 20 minutes wouldn’t be enough and I would pass out with it on. I use a fan constantly that helps me sleep. I bought a cooling pillow from Costco that helps. My main em area is my hands and arms but recently my ears have joined the party, ugh! I would try elevation with your head up when you go to bed. I was diagnosed with postural hypertension and I don’t know if it’s connected to the em. I have always had perfect bp, but a cardiologist had me lie down and then took my BP and it was really low, sat up and it was perfect, stood up and I have hypertension. Try taking your BP in these different positions and give a minute between changing positions before checking it. I hope you get relief
When using evaporative cooling, keep in mind to be aware of how often you have moisture against your skin and to have dry times between in order to avoid things that happen to the skin when too much moisture is against it for too long. Such as infections, etc. It seems some areas people get fungal infections and such. I live in a dry area so it is less of a problem.
In short, I use them when I need them and when it is bad, so that I can sleep. But when it’s not bad I stay dry. Or go a day or so inbetween. And clean the skin afterwards with like a baby wipe. Because moisture can be the enemy too, even though it is so comforting.
That’s why I prefer the scarves that puff up over the towels, there is less moisture with them. And the cooling is better, I think.
I read your story. And it’s pretty similar to the pain I feel. Especially with the sleeping. I also have Reynauds. So I understand the struggle of being too cold and too hot at the same time. If you’re open to it, I’d love to have a deeper conversation about this sometime.
I experience flushing when laying down .I have no been diagnosed . Perhaps not in the face. But knees and feet . Joint pain yes .My body temperature is irregular . I get very cold and then all of a sudden very hot.
I’ve always been told when we lay down our primary nervous system is not as engaged, and our secondary starts to take more precedence then when we are awake. As EM is often an issue with the autonomic nervous system, many of us see our EM worse in the evenings and night as our autonomic nervous system starts to take over. I rarely flare during the day now that I’m on Mexilitine unless I’m exposed to heat, but I’ll still flare at night for no reason at all.