I have been battling with my condition for about 7 years. I had a battery of tests for allergies, and eventually my GP diagnosed (at my suggestion) that I had a nasty case of rosacea. Now however, I'm not so sure.
I am suffering an extreme flare up - I arrived in Australia, Gold Coast, to visit my son, a week ago, from the UK. It was unseasonably hot. Within 3-4 days I knew for sure I was going to have a flare. And, sadly, this has been the worst one I've had for years - in fact the most similar was the first time I had it.
There is a very distinct pattern to a flare..so if you can bear with me I'll describe it, as just maybe it might help someone to identify it as one thing over another - ie is it rosacea or erythromelalgia.
I can 'feel' it coming..I get a distinctive tingling in my flesh, particularly in my lips and in my 'nose to mouth' creases. Then my face starts to heat up, and it gets really properly burningly hot, and of course it goes very very very red. It hurts. Then it swells up (in the attached pictures the swelling has actually gone down a bit). That hurts too. This time the swelling went right up into my eye sockets. I looked like I'd been in a punch up. The pain is an intense burning sensation, there's some itchiness, and there's a sort of deep ache..that's not quite right..it's so tender and ultra sensitive, even to just moving around normally hurts in this odd aching way.
I manage it by trying to cool it with damp cloths, splash cool water on, sometimes I freeze a bottle with water and use that as a cooling pack - this brings real relief (I am quite careful to not go overboard with very icy cooling as I know that can be damaging, but it's hard sometimes as I simply feel like my face is on fire).
As it happens, my son lives with a doctor, he recommended to use ibuprofen and/or aspirin to ease the 'inflammation' and to take anti-histamine as well. I'm taking these as I can't see what harm they can do but it's impossible to know if they make any significant difference.
And then keep cool, out of the sun until things get better. Once this passes, I will be using 50+ sunblock (not sun screen), and I have a large hat. Just to be clear, I didn't spend any amount of time in the hot sun when I arrived and did use 50+ sunscreen as well.
This time I didn't get a symptom that I usually do, which is hot, burning swelling ears. But I did have a strange one that I haven't had for a long time, which is a very odd tingling itchiness in my lower forearms and legs.
The other thing I do is to use some kind of cream to ease my poor ruined skin. Once the flare has peaked, and is beginning to cool off and the swelling eases, the top layer of skin starts to peel and flake. It's very unpleasant...it is very hard and dry and uncomfortable if I don't keep it 'lubricated' as it were. Most things are too painful to put on my skin at this stage, but oddly vaseline with cocoa butter has been a boon this time. Absolutely no stinging and it has helped me manage the 'shedding' stage much more easily. That's why my face is so shiny in the picture.
I stumbled across something about erythromelalgia in a rosacea forum, and the symptons - especially the burning of my ears - seem to fit a bit better. I will definitely be running this past my GP when I get home.
But...if anyone has any advice or help I'd be so very grateful. I try not to let it get me down, but it has a massive impact on my life - there are a few days where I don't really go out, while it sorts itself out. I have had to miss work - I like to think I'm not vain, but I do feel very self conscious about it and can't help wondering what people must think (ie I'm a drunk..I don't drink alcohol at all because guess what...it makes me flush bright red!..).
Anyway. Big sigh. I look forward to hearing from the community. You all have my sympathy and best wishes with your conditions xxxx