Hey Danny
Just wanted to touch base and see if you're feeling better?
Hey Dom - Not really - I got sick and had a fever and was having a horrible time controlling my body tempature. Feeling better now, but the facial EM is really hard to control at night. I like to be warm when I sleep and before I could at least keep my head near the heater. Now I turned my bed so my feet are near the heater, which of course causes them to flare but at least I can sleep with painful feet as opposed to a painful face that is hard to sleep with. I have found that keeping a steady temp in the apartment at about 65 degrees(about 5-10 degrees warmer then usual) an hour before bed helps me adjust to getting into a warm bed. Thanks for your concern Dom - hope all is well
Danny
Dominique said:
Hey Danny
Just wanted to touch base and see if you're feeling better?
hi Danny, sorry for a late response I was out of the pc for some time. So, about the swelling yes, I do have it during the face flare up, actually theres always present swelling when part of my body flared up. I used to have bad times when laying in bed specialy with my feet and hands too before the symp. surgery. Yes, I also had cheeks, nose and ears flaring, but it was not that bad as the feet. Well, now when my feet ok and hands are almost good as well I have flares only in ears and face and yes the worst is when I go to bed, specialy laying on side, with one cheek and ear on the pillow causes flaring, redness, swelling. I'm sure all EM symptoms get worse at night or when you lay down, dunno y, but I think its well known fact. Can be caused by the body relax, veins getting wider, filled with more blood. I'm really sorry for you not feelin good, but if you still can sleep with burning feet I'd say its not that bad ;)) I was 3 months completely w/o sleep so trust me I know how it feels. Just by the way I remember I read some article (long time ago) about EM and that it can even affect organs for ex. heart etc. Dont remember where did I read that or what was true about that, but I will look for more info on net about possible life threating effect. On the other side I still believe EM is the worst pain that exist but not fatal. I had times when I wished I could die from the burning pain. Wanted to ask if you having normal temperature face when not flaring, or is it cold? All parts of my body that are/were affected with EM were always very cold while not flaring. My ears are ice cold and then they start burning. More cold they get, the worse is the burning "response". It was with all my body parts, thats why sympatectomy was so helpful for me, it regulated my feet temp. to be permanently the same (one would say "normal") ;) Had the same success with hands but it kinda got worse after a year, dunno y, but its fact the hands tend to recure, feet are still 100% okay and I hope it will stay like that. Other way I'm going to rape my doc to do another surgery lol ;)) I'm not any sympatectomy campaigner, not at all, I'm just telling my story. Sorry if something from what I said wasnt clear, my English is far from perfect :) Sending lotta good vibes your way, Liz
Oh, also wanted to say any kind or pressure causes EM flares to me, specialy to my ears.
Hi! Recently my EM spread to my face but I get red blotchy rashes all over my body now. I think I have EM but also think something else is going on. It really seems like I have MCAS. Can someone tell me how this is diagnosed?
I saw an allergist / immunologist who will test for tryptase (blood) and some other markers. You might have a 24 hour urine test as well. My tryptase was mildly high, but I didn’t have anything else to merit a diagnosis. Still my derm says when she scratches my arm, it turns bright red and that is indicative of mast cells. I failed high dose OTC antihistamines but am thinking of pursuing other options like Xolair
What is the treatment for mast cell? I’ve tried Claritin but it didn’t help.