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Saturday, 1 March 2014

Week 3 and 4: How to keep sane is the magic question

So the tremendous fire has spread from head to toe.  Each day it has just pushed further and further with the excessive inflammation. From head to neck,  then to shoulders travelling down both arms (known as red sleeves, indicative of Red Skin Syndrome), then torso and by the end of week, followed down my legs to the start of my toes. The bumpy hives is throughout and the itching comes in waves that rarely break. The only relief, though I don't know if it's the best, is to jump in the bath.  Then apply greasy goop to insulate what was skin but is now either broken and weeping or so taut that to move would be to crack apart at every seam. The sensation is raw pain, as all nerve endings feel as if they are just completely exposed.  I have also developed oedema in my knees and ankles over this few weeks which doesn't add to an already unsightly picture. And the wonky body temperature means I have started with momentary uncontrollable shivers.

Since my last posts I have been to see the allergist at the hospital which I'd been on waiting list for some time.  Not much happened as they could do no patch testing as there were clearly no skin patches free.  Some blood tests were taken which revealed the obvious for me, with showing up positive to things like dustmites, pollens, grasses, molds etc. I've been referred for a dietician app. as a follow up... meanwhile got into see the dermo at hospital who to my horror was going to be the same private dermo I'd been seeing for 18 mths with only progressively worse problems.  Thank god there was one other available, not that it made a lot of difference. As there stance is much of a muchness - yes, you have a history of atopic eczema and associated allergies, this calls for cortisone.  I explained that I was pretty sure the treatment had created a completely different problem and that the cortisone was the culprit here, not the eczema.  He basically  said well, all I can suggest is another immunosuppressant drug, as it is not economically feasible  for the hospital to treat this any other way than with one of these 2 drugs. 

I asked him if he had ever heard of Red Skin Syndrome or Topical Steroid Addiction and Withdrawal. He off-handedly said, oh yeah, I think I read an article in a text book when I was studying, then proceded to hand me some printout info for the immunosuppressant drug to go away and think about for my next app. Not likely to bother given I have just stopped taking Azathioprine(another immunosuppressant, that didn't do much except make me feel permanently more cruddy that usual.  Anyways, the naturopath I've started seeing is keen on supporting gut function and supporting me in strengthening my body, and my gp is also supportive in trying to get me as healthy as possible and keeping a check on what's happening.  She said she'd never seen anything like it, but was willing to look up the ITSAN site and have a squiz which was comforting, because the hospital just looked at me like I had four heads when I said I did not want cortisone. 

Sleep has still not been on the agenda due to the never ending itching and nerve pain.  So far I have been plodding through my days with things that seem to take forever to do -  baths, greasing up, washing umpteen changes of greasy clothes and bedclothes in a day, keeping appointments and preparing meals,etc.  But yesterday, after having no sleep for weeks, I finally fell asleep at 4am and woke at 1pm, which you would think would be grand, except when I woke up it was like my body had turned into a statue and any slight movement was excruciating.  My bedclothes had dried onto to all of my weepy skin and I was in a world of pain.  I lay there for an hour trying to muster the gumption to get myself up.  It was hopeless though and I gave in and rang a wonderful friend who came and helped me out of bed, helped me undress to be able to have a bath and then helped me re dress, dished us up dinner and got a load of washing out for me.  I was so lucky she could come. What a mess.  Thank goodness today is a little better.
I am dearly hoping that there is some reprieve between flares and this one will be over soon.!!??
Well wishes to all you others out there and thank god there are some of you who can say you made to the other side and you have your life back again.  You are my beacon of light. xx






  1. Wow! You are so strong going through this! The first 2-3 months are the worse I've heard. I'm 2 months in now and even if my skin is far from clear I do have hourly breaks from itching and I only wake up once per night.
    Hope you get your brake soon too!!
    x Jo

  2. Thanks Jo, me too.
    I guess the fact I am 50 and have been resorting to cortisone creams as a last resort all my life and with it getting so much worse over last few years finally resorted to following dermatologist's directions in upping the anti.
    Bad choice!!! Oh well, down hill at the moment but uphill will come in time, I hope!
    Good luck with your progress, glad to know I'm not alone in this.
    caro x

  3. I hope you start feeling better soon, my son Josh is suffering from this at the moment he's 2 months in and his skin is similar to yours.Lets hope healling comes quickly

  4. Thanks for the good thoughts and good luck to poor Josh. I had a read of your blog and the gap diet sounds interesting. Look forward to how it goes for you all.