Well after starting in my feet, progressing to my hands, about a month ago I noticed my cheeks and ears burning at night. Now I'm worried the EM is causing swelling in my head. Sometimes if I get too warm (63-70 F) it feels like someone has my head in a vice. My cheeks, forehead, temples, ears, nose, all burn. I think my gums are swelling too because im having a lot of pain there and my dentist said they look okay to him. Does anyone know if I'm in danger of dying?
Wow... Sorry to hear that. Well I do have EM flares in my cheeks, nose and ears. In fact my ears were the first affected part of my body. Don't know how much dangerous could a serious case be. I think noone ever made any research about it.
do you get swelling?
liz said:
Wow... Sorry to hear that. Well I do have EM flares in my cheeks, nose and ears. In fact my ears were the first affected part of my body. Don't know how much dangerous could a serious case be. I think noone ever made any research about it.
Wow, I'm so sorry to hear this Danny! I get EM in my cheeks, ears, and chest, as well as hands and feet, but haven't experienced the swelling in my upper regions, only in my feet. I don't know how dangerous it is, I know if my feet swell too much they crack and bleed. Do you have a doctor who is familiar with EM? You should be seen ASAP. Praying for you!
I get swelling in my cheeks when I wake up and I get quite bad face flares with EM me and others who have talked about this on my Facebook support group seem to relate that with facial flares they can feel-
Dizzy, nauseous, light headed, have migraines, feel like they are suffocating and as if they can’t breathe. I get all of the too with facial flares and they are a lot harder to cool down. It is probably most likely just am EM flare as they are a lot more frightening than any others due to the way they make you feel etc, don’t think there is any need to panic! 
I have EM in my feet, hands, face and top of my scalp. Sometimes my feet will freeze and my head will be hot. It is very difficult to control my body temperature.
Hi, try not to panic it doesn't help. My EM has been spreading progressively through my whole body. The most disturbing symptom for me is the accompanying surges of weakness and malaise,(lack of oxygen?) I sometimes experience- hard to describe but really dreadful.. Actually, I was noticing these symptoms at least two years ago or more,( before the more typical EM symptoms had fully taken hold- I was just having some intermittent burning pain in my feet at the time which I did not associate with it). I could not figure out what it was- it would just come over me without warning. I thought maybe it was related to blood pressure, heart, or circultaion issues. Since that time, I have developed the "classic" EM symptoms- very severe and constant pain redness and swelling in my feet , hands and more recently in my head and neck, I also cannot regulate my body temperature and I have raynauds too. I now feel that convinced the symptoms of malaise , weakness and the feeling that I am "dying" are related to the EM but I cannot cannot explain how. My guess is that since blood carries oxygen- it is a lack of oxegen to the brain. EM is a vascular disease and is related to the circulatory system,. At the time of the onslaught I was living in a apt. rental where I was exposed to voc's from some very scary nerotoxic substances and I suspect that my illness is possibly a result of this. When I am exposed to toxins in the environment it definitely triggers severe symptoms, and I believe I have developed multimple chemical sensitivities.
I am now planning to a physician of environmental medicine to explore some linkage between this exposure and my symptoms.
All I can say is I have been having these symptoms for probaly about 3 years now- and I am not dead yet so probaly your death is not imminent. Hope that helps in some way.
I'll find your facebook group and join it.
Lauren said:
I get swelling in my cheeks when I wake up and I get quite bad face flares with EM me and others who have talked about this on my Facebook support group seem to relate that with facial flares they can feel-
Dizzy, nauseous, light headed, have migraines, feel like they are suffocating and as if they can't breathe. I get all of the too with facial flares and they are a lot harder to cool down. It is probably most likely just am EM flare as they are a lot more frightening than any others due to the way they make you feel etc, don't think there is any need to panic! :-)
I'm the same way, dizzy.
dizzy said:
I have EM in my feet, hands, face and top of my scalp. Sometimes my feet will freeze and my head will be hot. It is very difficult to control my body temperature.
Thanks Leah, I hope this new doctor can find out what is causing your EM and can fix it.
Leah said:
Hi, try not to panic it doesn't help. My EM has been spreading progressively through my whole body. The most disturbing symptom for me is the accompanying surges of weakness and malaise,(lack of oxygen?) I sometimes experience- hard to describe but really dreadful.. Actually, I was noticing these symptoms at least two years ago or more,( before the more typical EM symptoms had fully taken hold- I was just having some intermittent burning pain in my feet at the time which I did not associate with it). I could not figure out what it was- it would just come over me without warning. I thought maybe it was related to blood pressure, heart, or circultaion issues. Since that time, I have developed the "classic" EM symptoms- very severe and constant pain redness and swelling in my feet , hands and more recently in my head and neck, I also cannot regulate my body temperature and I have raynauds too. I now feel that convinced the symptoms of malaise , weakness and the feeling that I am "dying" are related to the EM but I cannot cannot explain how. My guess is that since blood carries oxygen- it is a lack of oxegen to the brain. EM is a vascular disease and is related to the circulatory system,. At the time of the onslaught I was living in a apt. rental where I was exposed to voc's from some very scary nerotoxic substances and I suspect that my illness is possibly a result of this. When I am exposed to toxins in the environment it definitely triggers severe symptoms, and I believe I have developed multimple chemical sensitivities.
I am now planning to a physician of environmental medicine to explore some linkage between this exposure and my symptoms.
All I can say is I have been having these symptoms for probaly about 3 years now- and I am not dead yet so probaly your death is not imminent. Hope that helps in some way.
Thanks clarissajo, my feet do the same thing, I'm actually hoping by losing weight my skin will have more elasticity and the swelling won't crack my skin open so much.
clarissajo said:
Wow, I'm so sorry to hear this Danny! I get EM in my cheeks, ears, and chest, as well as hands and feet, but haven't experienced the swelling in my upper regions, only in my feet. I don't know how dangerous it is, I know if my feet swell too much they crack and bleed. Do you have a doctor who is familiar with EM? You should be seen ASAP. Praying for you!
Hi Danny! Same here, started having EM symptoms in my hands and more recently my face, cheeks nose forehead nose and ears, so far no swelling (thank God) please try not to panic, I’m POSITIVE it makes it worse…and, I no doctor but I really don’t think you’re dying;)
Hang in there!
It’s called Erythromelalgia- A helping hand
NiceGuyDanny said:
I’ll find your facebook group and join it.
Lauren said:I get swelling in my cheeks when I wake up and I get quite bad face flares with EM me and others who have talked about this on my Facebook support group seem to relate that with facial flares they can feel-
Dizzy, nauseous, light headed, have migraines, feel like they are suffocating and as if they can’t breathe. I get all of the too with facial flares and they are a lot harder to cool down. It is probably most likely just am EM flare as they are a lot more frightening than any others due to the way they make you feel etc, don’t think there is any need to panic!
I’ve had EM in my entire Neck and head area for almost 3 years now. It’s so severely painful somedays that if it wasn’t for medicine you feel more like you want to kill yourself than just feel like you’re dying!!! Find a good doctor and get some good medicine that can help control the pain. Everyone is different, for me the only meds that work is Gabapetin. My Neurologist did say that even though it feels like you’re dying that it cannot kill you. Think positive… it’s about all you can do
That sounds a lot like Mast Cell Activation Syndrome &/or some kind of systemic dysautonomia, which sometimes run together. (I'm referring to the original post and also Leah). I have MCAS and treatment is helping a lot. Less EM symptoms too. I don't suppose you live in the US near or in SC, Boston or Ohio? That's where the best known experts are. There are a few others scattered about though, usually allergists or hematologists but occasionally cardiologists, neurologists or geneticists. I've run into other EMers with the same other disorders. You can find more info on the website for the Mastocytosis Society or Mastocytosis Society Canada.
Leah said:
...My EM has been spreading progressively through my whole body. The most disturbing symptom for me is the accompanying surges of weakness and malaise,(lack of oxygen?) I sometimes experience- hard to describe but really dreadful.. Actually, I was noticing these symptoms at least two years ago or more,( before the more typical EM symptoms had fully taken hold- I was just having some intermittent burning pain in my feet at the time which I did not associate with it). I could not figure out what it was- it would just come over me without warning. I thought maybe it was related to blood pressure, heart, or circultaion issues. Since that time, I have developed the "classic" EM symptoms- very severe and constant pain redness and swelling in my feet , hands and more recently in my head and neck, I also cannot regulate my body temperature and I have raynauds too. I now feel that convinced the symptoms of malaise , weakness and the feeling that I am "dying" are related to the EM but I cannot cannot explain how. My guess is that since blood carries oxygen- it is a lack of oxegen to the brain. EM is a vascular disease and is related to the circulatory system,. At the time of the onslaught I was living in a apt. rental where I was exposed to voc's from some very scary nerotoxic substances and I suspect that my illness is possibly a result of this. When I am exposed to toxins in the environment it definitely triggers severe symptoms, and I believe I have developed multimple chemical sensitivities.
I am now planning to a physician of environmental medicine to explore some linkage between this exposure and my symptoms.
All I can say is I have been having these symptoms for probaly about 3 years now- and I am not dead yet so probaly your death is not imminent. Hope that helps in some way.
So sorry to hear how it affects you Danny, I don't suffer the same as you so can only offer my sympathy. What does your doctor say. I doubt your fears have any foundation but it must be awful for those of you who have these symptoms.
I told my hematoligist last week and he didn't seem all concerned but he never does. I have had a bone marrow biopsy from him and nothing was found with that so now I'm getting a skin biopsy and hopefully that will tell me something.
Thank you all for the kind support and I wish you all comfort and healing in your struggles with these terrible symptoms. We must keep in mind that some of us may have more then one disease or syndrome operating at one time.
to Kentuckian- I appreciate your advice- I had a hunch my symptoms were pointing in the direction of some kind of dysautonomia - it is just confounding when you have symptoms of more then one disease( EM). I will definitely check out the MCAS website- I hope you continue to enjoy improving health.
If your hematologist is not one of the few who is knowledgeable about MCAS, they probably didn't use the proper procedures and dyes to detect MCAS. And even if done right, that particular test can be normal even if you have it. There are a variety of tests and they don't have to all be positive. They do some to rule out systemic Mastocytosis rather than to confirm MCAS. May still be worth pursuing, even if you have to go elsewhere. Dr. Lawrence Afrin at MUSC has a list of tests and diagnostic procedures he's willing to e-mail to doctors if they want to know how to evaluate someone for MCAS. Your doctor would need to e-mail him (address is online).
I hope the skin biopsy is helpful. Biopsies are no fun, especially when they don't provide answers.
You're welcome Leah. Took me many years to realize that I must have multiple odd disorders going on and then to find out they are all connected in that a genetic disorder I have (similar to Ehlers-Danlos) raises the risk of getting my other disorders (EM, Dysautonomia/Orthostatic Intolerance, MCAS, Fibromyalgia, Osteoarthritis, Glaucoma, etc). It "just" took finding the right doc to put it all together. It was a long search for that doc though. Good luck to you in finding your causes and connections.