As you mention, it is quite a common illness, and even from readin the posts in here it seems to effect a fair few members... you're not alone
There are much worse things out there, bu i know how it can greatly effect your life... it just trying not to let it do so, but its much easier said than done!
I have severe full body atopic eczema, have done since i was a kid. It mainly came and went throughout 0 and 19 then it vanished totally for 3 years, came back about 3-4 ago. I could keep it somewhat ok last year, usual steroid based creams... but this year has been a disaster.
Had about 5-6 major flair ups and been living with it in a right state, cancelled so much, lost my job, was basically hiding, went to the skin clinic and was papped into hospital for 9 days. The differance non stop creaming made, i was REALLY good when i left, best in years! But that level of creaming with a life was undoable, and as much as i put on at night, my skin was back to bad after a week
I seem to do the bulk of my damage in my sleep!
Whist in hospital they finally mentioned something different to me (never mentioned them before), drugs that suppress the immune system as apparently lots of 'our' issues are caused by it being over active. Cyclosporine has been mentioned, but i was told that the chances of side effects were higher than with what they put me on (tho results can be seen VERY quicky, weeks). I have been put on a low dose of azathioprine, which could take 2-3 months to work, but apparently results are very good with it! On my 4th week, so need to see what happens!
With everyone (as id imagine you know) different things work for different people... Lots have mentioned light treatment. First time i got this it worked fantastic, but soon after my skin was back to bad. Second time, i took REALLY bad to it and it was aborted. Never had it again. I see no difference during summer and winter, its bad full stop lol. Most annoying thing is that mines did vanish for 3 years, and i havnt a clue why! Nothing changed, not my diet, living condition, jobs, stress etc (if anything i was more stressed).
Its sadly something you just need to get used to, and i must be honest... im not. People who understand are great, mates, family etc. But the stares of childern can still get to me... some adults too even. It hard to head out and be active when feeling so bad, or worried about how you look, but lots of it is more how you feel. In general most are very understanding, and wont say a thing
Quickly before i finish, you also seem to get used to it. My skin it much better now than it has been recently, but i can still name all my sore bits. (shoulders, lower back, upper chest, upper arms, left hand, both ankles, my hips, behind my legs, ears) But this feels like nothing to how it was. So today at the skin clinic i went in all happy and feeling good, doctor seen me and called my back a disaster... guess im just used to it being much worse!
Anyway, seems like lots of us would be willing to chat if you ever want to
(sorry for my most epic post ever)
