Thanks for sharing - just what I was looking to put in the office!
Don Jones said:
I have it in my neck and I currently use this fan: http://www.amazon.com/Small-Fan-Mini-Air-Conditioner-convenient/dp/...
You can wet and insert a sponge so that it acts as an evaporative cooler. Can also set it on a desk in front of you so you don't have to hold it.
I also have it in my face and ears also my chest and forehead as well as hands and feet I have found nothing that works but lidocaine infusion or ketamine infusion do help some what good luck
Moving won’t help, trust me! I live in Scotland and the weathers cold and pretty rubbish 24/7 and I have severe EM even with the constant cold! I know the way your thinking and the way I can’t understand… Why cold weather doesn’t help.
Freddy Jr said:
Thinking of moving to Colorado to get away from the Texas heat/humidity for better/cooler weather. Your thoughts?
Dale said:I am seeing Dr Graham at the Neuromuscular Clinic at the university of Colorado for my em he is a great doctor and is willing to go above and beyond to help you in every way possibly good luck
I think Colorado can be cool, but the summers here are really hot. I was actually thinking of moving to somewhere like Oregon or Washington or anywhere cooler. I do think Colorado is cooler than Texas though. Thanks for sharing your ideas with me. I have only tried 3 laser treatments... how many have you tried and when did you start to feel a difference?
Freddy Jr said:
I am thinking of moving to Colorado to get out of the Texas Heat/Humidity - looking @ Denver Colorado for cooler climate weather. Your thought?
cutegirl said:@ Binglover, my ear has also become very sore. It is very red and burning hot and if I even brush anything against it or barely scratch it, it hurts and also becomes even hotter. My symptoms started in my 2nd trimester of pregnancy with twin girls. I got shingles and from that point on, I developed a severe, hot burning and red pain in my face and ears. It seems like it's more on the right side of my face and right ear. All doctors have been very skeptical as to what it is but I am seeing a neurologist at the moment, who is sending me over to The Neuromuscular Clinic at the University of Colorado to get a second opinion on Erythromelagia. I'm pretty certain it is this because it seems to match more than any other condition out there. I have trouble with even doing any light cleaning, bending, any light exercise, being around any heat or sun and of course, cool packs and fans make my face feel much better. Usually my house is at about 67 degrees and when i was pregnant it was so bad, I had to set my thermostat at 57 degrees!! Cold I know. I think it has been better since being pregnant but I still have it everyday. I am currently on 90 mg of Cymbalta and if that doesn't work, on to something else. I have tried numerous other drugs, incluging gabapentin. Anyway, thanks everyone for your stories. It's really nice to know I'm am not the only one out there with it in my face/ears. :)
Hello everyone,
I am disabled with widespread EM - scalp, ears, face, feet, knees, hands etc.....After fighting a losing battle seeing specialist upon specialist and having most tests come back normal - I have finally been diagnosed by pain management specialist as having EM - idiopathic at present(in other words no idea why or if primary/secondary). I have been on everything - venlafaxine, naproxen, pregaba, gaba , etc.... Nothing has eased EM pain, swelling, flares, burning , pricking etc. thus far save aspirin 350 a day, and high doses of magnesium omega 3 , vit D, vit C, B complex and an antihistamine with lorazadine in it.I try to stay cold ,icepacks, etc... rested , unstressed etc... Relief slight but better than nothing. I am on fire constantly - esp late afternoons - evenings. Even sleeping tablets dont knock me out anymore.... im really not doing so good my friends.
Re: EM I am having a trial IV lidocaine infusion in hospital. Looking at the research albeit sparse lidocaine has been found to help temporarily(says it lasts around 3 weeks , possible 35% reduction). Lidocaine also being tested for use in fibro symptoms too.Apparently its extremely costly which why not mentioned or offered?
Out of interest how many of us have been offered it or had it? Did it help?
As i also may have fibro(again - struggling to get diagnosis) - . Have tried everything going - nothing helps. Epsom salt baths are impossible as cause immediate flare . Going to see a myofascial release specialist (according to Barnes technique), who specialises in fibro. . Again, according to a paucity of research ,its where improvement/relief is making some ground. Also trying SAMe supplement (amino acid).
Will let you know how both go. You welcome to message me if you want to talk/discuss.
Fingers crossed!
God bless
mads
ugh...I am visiting Canada at the moment. a wonderful but brief respite from the hellish summers in west Texas, and I am lying here miserable, when the high was something like 75ºf today, and burning all over. I was opening up this board because I wanted to see if anyone else out there gets hot all over. I get this crap worst of all in my feet and hands, but my face and head get it terribly as well anymore, and so does, it seems, my entire body. I swear my whole body feels like it is on fire. I can put a damp towel underneath me, lie on it for <5 mins, and it will feel as though it has been taken from the dryer. my temperature internally is almost never above 98º, and oddly enough when i have a fever - when my temp rises I start getting cold. that is usually how I can tell I'm getting sick.
at any rate, I do get this on my face, my scalp, the top cartilage part on my ears, in my eyes on occasion, my lips (often followed by many inflammatory type fever blister things) strangely I'm starting to get the burning (in addition to just being incredibly and ridiculously hot) pain in my thighs and just above my elbows in my biceps / triceps areas.
I see photos of some of the people here with severe disease affliction and progression and I feel terribly out of place complaining about the heat and pain when I don't have this nearly as severely as many others do. but I do think it is good for people to list such a wide variety of EM manifestations on here, because when some piece of information doesn't make sense out there, it is nice to be able to come in here and find a potential answer, or at least a very sympathetic shoulder to cry on.
Hi there,
I also have it in my scalp- for about a year now.
I am very short on time as I just began a new job and am in training, but I want to share with all of you that 90% of my EM has disappeared. So there is hope! It began in Nov 2011 and I got an official diagnosis from a dermatologist about 1 year later. (Took MANY visits to specialists before being diagnosed) It was in my hands, feet, knees, face, neck and ears. And toward the end, it was beginning to spread to my upper back. It was truly miserable. Not so bad in the morning, but very painful starting late in the afternoon and then continuing throughout the evening. My swelling and throbbing of hands, feet and knees was awful.
I have been on Amitriptyline for more than 10 years for migraines, so don't know what affect this med had on my symptoms. Anyhow, early in 2013 the symptoms improved and then also became infrequent. Here we are in June 2013 and I as nearly symptom free. I have noticed that two things may still trigger an attack. Having an alcohol drink and becoming emotionally upset.
I really don't know what I can attribute my healing to. One possibility is that I read a book called, "TQI Diet, To Quiet Inflammation". I followed the authors list of foods to avoid and also her advice on which foods to include. I also stopped eating anything made out of wheat after reading the book "Wheat Belly". And then lastly, (yesss! I love reading health and nutrition books!) I read a book about Paleo eating by Robb Wolf. I also began to eat many whole and simple foods and avoid all things that are processed (come in a box and are full of chemicals and preservatives). I mainly eat vegetables, high quality protein, and quinoa or brown rice, and fruit.
I really cannot tell you whether or not changing my diet was the cause for cure, but I believe it to be. And I dropped 23 pounds that have been stubbornly hanging around for the last 6 years.
I wish you all the very best!
-Nanci