flakes

Well today im well and truly flaking like crazy this is the second time since I started tsw early march so it looks like each cycle takes a month to do,so now im noticing the pattern I can keep track of it better and hopefully soon I will get one of the 'brakes' that everyone talks about fingers crossed.
This past week or so ive been the worst so far, no energy, looking bloody awful, feeling bloody awful and generally not wanting to do anything bar have a bath haha, today durable ng the flaky period im feeling slightly more energetic not much though but still a tiny bit of a change is better than none.
Back to work tomorrow :0( haha x

no change

At the moment one day just blends into the next with no change my skin goes red hot itchy and weepy then flakey and falls off then redhot and weepy can't wait for the break that people talk about. Hopefully I will get one soon
Im back in work in 3 days n really dont know how im going to manage it that's whats making me think about maybe asking about immunosuppresents when I get my derm app I know quite a few people use these successfully through tsw as the way I am now im no use to anyone and thats not a good way to be when you have a job and kids :0(
I hope the appointment comes through soon x

knees again

My knees are a total mess my god im readyfor this to be done with already ive got untill Wednesday for this flair to calm cos im back in work then :0(
Dunno what I will do if it doesn't x

red monster

Ive woke up this morning looking like a red scaly monster today think im having my secondflair before tthe first is even over the sleeping tablets of the docs were crap I took 3 in the end and still took me ages to fall asleep once sleep came though it was a deep sleep of about 6ish hrs so better than I have been getting but not what I expected to happen :0(
I seriously cannot wait for the day I get my first break it will be a joyous day haha as atm I just seem to be going from bad to worse

 

lesson learnt

Well I have learnt not to put a bloody thing on my skin, the salcura spray looked like it was doing my skin wonders so decided to put it on both arms the full length of them the stupid fool that I am.....well needless to say I scratched myself stupid all night and ended up with a trip to the docs this morning :0(
My docs app went well once I explained red skin syndrome she didn't even try to give me steroids yey! I left with a prescription for sleeping pills, antibiotics and some 50/50 cream and also a derm referral yey! I just hope the derm is as open minded as my doc was x
Dont think will be trying the 50/50 though moisturiser is not for me x

salcura trial

I recently sent off for a trial sample of salcura it came today in the post. Ive chosen to trial the spray on my wrist and the cream on my hand.  After doing mw for 6ish weeks I am sick of seeing my dead skin on everything but im not ready to try normal moisturiser again that's why this product especially the spray appeals to me as its completely natural and free from steroids, hormones,  cortisones, peroxides, , alcohol, parabens.
On initial application both areas stung for a few minutes.  Here are my before pics of areas so can compare after a few days (im using the spray on my ben wrist)

 

I didnt bother with the after pics as salcura wasnt for me I facebooked them to say I had literally ripped my skin off during the night as stupidly I covered my arms in the moisturiser they were very nice and sent me out a gentle version of the spray as it's such a small bottle and im head to toe mess I decided not to spot test it this time but to use is in the places I needed just once a day I did notice a very tiny slight improvement while doing  this I didnt rip mu skin off where applied - backs of knees and inner elbow the trail bottle has ran out now but I definitely think one application a day is the way to go with this I do have one more cream to trial though before I go out and buy a full sized bottle but so far this is the top of my list to buy.    The new one im trying is 

sooo tired

Today hasnt been a very good day, my face has flaired again its red rashy, hot and very itchy, ive spent most of today sleeping and I still feel tired! I just feel so useless I should be out enjoying the nicer weather were having with the kids not bloody sleeping the day away!!

update pics

Well not posted for a few days so thought id let ya know how I got on with my products, the deodorant still stings on application but it doesn't irritate after that so all is good there, the zinc paste has been really good in healing the cracks but its a vicious circle at the moment because no sooner does it heal and im back to scratching like mad again or in the case of my eyes rubbing them so they split again :0(
My knees are still continuing to get more stretch in them so thats good but im still very dry, red and quite itchy im cutting more now when scratching im thinking maybe because my skin is starting to produce its own oils again slowly which has to be a good thing doesnt it?
I just wish I could look into the future and see how long this will last, knowing when it would end would help alot haha but they suppose I should be glad that I know it will end sometime in the next 1-3 yrs at most :0)
Im going to the doctors on tuesday to try get some sleeping tablets and hopefully if I get an appointment and not a telephone consult I can run the whole tsw thing by them and see what they say as not alot seem to accept tsw which is crazy! Anyway will end here n post a few pics I took today of my skin

 

Here 

 is a before and after pic of my eyes using the zinc paste as you can see the splits look alot better

delivery day yey

Well today I had to parcels in the post, fitted through the letter box so no luna scaring the postie haha, it was the arrival of my zinc paste and my deodrant spray yey! So I had a warm shower and put my products on, the deodrant stung abit when sprayed but only for a second or two and I was quite suprised to find it has a nice light smell to it so far it has done the job but will comment again after a few days of use as ive not been very active today haha. Ive used the zinc paste on my eyelids, ear, nipples (very sore place at the mo cracked and weeping :0(   ) and under my boobs and so far so good I havent felt like scratching it off once! I will post pics in a few days too see if theres any progress (fingers crossed)
My knees feel alot more flexible today so im thinking my working environment has alot to do with drying them out more, I have a 2 weeks off work now YEY! So I will see how my skin is and how it goes once im back and may have to see about that change of department. Wouldnt mind it actually once you can do your job with ya eyes closed it becomes a bit tedious haha x
Heres pics of the zinc paste and the deo, also zinc paste makes a sun protection not a high factor but better than nothing and when mixed with coconut oil its slightly higher and goes on more easily so im told x

sore tight and fed up

My god how I got through my 13.5 hr shift today I will never know, I was walking round like I had pooped my pants because my knees were that tight, my thighs are dry cracked and raw  , my arms seem redder and my stomach is now flairing also my eyelids are a mess but I have some good supportive friends asking how I'm doing and it helps, also had one moron ask me can I not wear makeup to cover it, this I dont understand why would I put an irritant on my face just so I look more 'normal' to other people it makes you realise how hung up on looks and what people think of you some people can be, I wonder if they would still feel the same if they had to go through this, people are also very quick to tell you how rough/ill you look as if it isnt obvious enough without having it pointed out to you!! Anyway im off to bed to sleep (hopefully)  heres a pic of my eyelids before I go xx

 Also don't think I have shared a pic of my ear yet so here that Is too x

hello im here its meee

Today in work I had one collegue ask me whats up as I didnt look well.....no shit sherlock im a flaky mess but thanks for asking, then I had another tell me well I suppose if this doesnt work you could just go back to using the cream...I had to restrain myself from hitting her with the joint of ham I was holding (I just played it through in my head haha). Ive come to the conclusion people are either dense or just dont actually listen when you are talking, in the case of the 2nd colleague id go for dense!!!!

Anyway the point of this post was to tell you about the incident I had with a customer today, I served this woman with some cheese shes not been in for a while but I used to serve her alot she always likes to try different cheeses then buys a lil bit she is a really nice lady and we always have a chat about our fave cheese ( yes my life is interesting isnt it haha) anyway as I went to serve her she asks me where the girl was that used to do the monday lates very chatty and likes cheese, ive not seen her in a while.....I didn't know how to answer as she was on about me!!!! (Noone else works mon nights)  so I just said oh I dont know and shrugged it off I didnt want to make her feel awkward but I never actually realised I looked that much different with no make up and dry red skin, maybe I dont maybe it's just customers dont pay much attention when your talking to them either haha.

Skin update had a bad scratch session last night mainly my chest area was quite uncomfortable because of it today :0(     pic below x

more pics

Typical tsw red rash that stops at the wrist my poor tattoo has taken a battering scratch wise its a good job they go layers deep haha x have also done a bit more damage to my inner elbow,  I could really do with cutting my nails but think im still mentally scarred from the time during pregnancy the doc advised this and I did, my god I scratched till my finger tips were raw and sore with no relief so ended up taking the back cover off my fone and scratching with that haha needless to say I wore it down and broke it :0(

:0 (

Well my knees are agony and tight again today I feel like crying there that sore all my thighs are chapped too, think its working on a chilled department it seems to have sucked all the moisture out my skin im going have to start wearing some cotton leggings under my trousers I just hope this helps also maybe a dss bath before work was a bad idea hahaha oh well onwards and upwards positive thoughts an all that jazz as its back to work I go :0(



Well shift ended and I think I am actually seeing an improvement in my skins elasticity as although dry tight and sore they werent as tight as earlier in the week so def heading in the right direction still x

update an pics x

Well today the backs of my knees are feeling less tight which is a good thing but im noticing that when I scratch my skin seems to be tearing more easily now, I also have two more swollen lymph nodes on the back of my neck x ive managed find some natural spray deodrant on ebay so eagerly awaiting delivery of this I hope it doesnt sting.
I ordered some new tops the other day too as I need something long sleeved with a collar but soft and thin to cover me but still let my skin breath found 2 lovely blouses and they came today ordering online is a god send as it saves the hassle of having to try things on in the shops its too uncomfy and time consuming,  anyway my tops came this morning and the dog was by the door when the guy knocked they have a habbit of knocking once then dumping stuff Iin the recycle bins for me to find!!! so I opened the door quick before putting the dog away and my god I think the poor guy must have a dog phobia because he paled at the site of my poor luna prob cos shes a german shepard but she is a big softy she does bark at the door but only till she gets attention but I didnt even get time to say shes harmless he threw the package at my feet and scarpered I didnt even get to sign for delivery I felt so sorry for him but it made me laugh haha I know im a horrible person x anyway heres my pics for today there my inner elbow is the first pic and back of my knee the 2nd also my luna just so you can see shes not a monster haha and my blouses x

selfie face flair argh hate selfies haha x

 

Had a crap nights sleep even after taking 3 antihistamines and my face is really tight and sore today not too itchy thank god but around my mouth feels like it's on fire, just excuse the state of my mug I hate selfies but think I should post atleast one face pic haha x 

Ive just had a dss bath so hopefully will feel a bit better as the day goes on.

Also I made the decision today to not go on my works night out, its not for another 8 days but I think a night out in a crowded atmosphere will just make me itchy and uncomfortable and its just not worth it but I was really looking forward to watching dreamboys haha but there will always be another chance (hopefully haha) x im hoping im able to make it on a day trip to london ive got organised end of june as its more shopping/sightseeing I hopefully wont have to back out x fingers crossed x 

upto date now x

So now im upto date on the past 4 and a half weeks,  I had a bad night and scratched under my boob I could feel the strip of skin come off and it started to weep I had to really stop myself from carrying on I also really scratched my inner elbow till it got raw and sore but I think the mw is helping my skin toughen up abit, the back of my left ear is still weeping my hair keeps getting stuck in it hopefully when the zinc paste comes it will resolve this, my lips are very chapped and around my mouth is red, and my eye area is cracked and very dry I have a few cuts on my eyelids too. But id say my worse areas are my chest and my underarms these are tight, red itchy and very very sore it hurts to wear deodrant ive heard coconut oil is good as a deo but I dont want to put moisture there as I know it will worsen so I need to find a natural spray to use will post if I get a good one x

Under my boob, both thighs and crook of arm x

pics of my legs they dont seem as bad yet

The only place that has troubled me leg wise are the backs of my knees especially in work and my feet my actual legs although itchy are suprisingly not troublesome yet and I applied more steroids there than anywhere maybe its that last place to come out

more pics x

The redness spread to cover my whole upper body my legs so far havent been as red they are mainly dry, these pics are my chest my shoulder and my neck, if you look closly you can see my lymph node standing out on my neck its quite common for them to swell during tsw ive been told x

you can see in the pics the difference over 4 and a half weeks of no steroids how the red spreads then dries out due to lack of moisturiser

how I decided to tackle my tsw - a bit of useful info x

Before I gave up the steroids I decided I would get my skin clear ish and try to use the sunbeds to keep it that way haha it was very nieve of me it didnt work my skin was unable to tolerate the sunbeds a week and a half after it flaired, I have decided that moisture withdrawal is the route im taking as moisturiser seems to make my skin red, hot and weepy and I itch more feverently. Its not easy as im very very dry and flaky and I get very stiff, especially the joints (knees, elbows, armpits) but this is preferable right now and apparently it can speed up the withdrawal process so fingers crossed. One thing I would recommend is dead sea salts I have a bath 3 times a week using these and they do give a bit of relief, also hydrochloride hydroxine antihistamines while they dont really help me get asleep ive noticed I do sleep deeper using these and thats a big plus x I have had to quit using make up not a big deal for me except my mascara I always wore that but my eyes are to cracked irritated and sore to even bother putting my self through the hassle. Suprisingly I handled the lack of mascara better than I thought by the end of my first shift in work I wasnt arsed in the slightest, I now have I look the way I look deal with it attitude and I put that down to the facebook group I joined - eczema and topical steroid withdrawal- red skin syndrome support group, I recommend you join its been a godsend. Also if you havent already join itsan.org they are the best place for info and also have a chat and questions forum I havent tried this myself but if your skin is weeping quite a few people have recommended zinc paste to help, im not weeping anywhere except the back of my ear so have just ordered some to try, will post when I have recieved and used It x

introduction and background

Hi my name is lynsey and im currently about 4 and a half weeks into topical steroid withdrawal or shitty skin syndrome as I call it haha x
my story began 10 years ago when I was pregnant with my son, about 4 months into my pregnancy I started coming out in a rash which steadily got worse, I went to the docs and was told it was eczema and given steroid cream and moisturiser, it was getting worse the creams didnt help I went back again and was given different creams again I had no luck so went back to be told there wasnt much they could do while I was pregnant I felt like I was slowly losing my marbles I couldnt cope with the itch but continued with the steroid creams hoping eventually they would work, it got to the point where I just couldnt cope and went to my maternity department in tears saying they had to help me, I was admitted to hospital and waited to see a dermatologist, 3 days of being in I still hadnt seen one and was told as it was now the weekend I wouldn't see one till monday so I could either wait in the hospital or go home and wait for a call so I chose to go home, the call never came so off to the docs I went again this time I saw a new doc that was standing in he referred me as an urgent case to the derm and told me carry on with the steroids.....3 months had passed since all this started and finally I got to see the derm I told her I had waited on a ward for 3 days to see someone and she told me they had never been notified she was very angry on my behalf as I was a mess head to toe my body couldnt hold any heat I was a shivering,, she carried out a few blood tests and gave me more creams including steroid and told me come back in a week, I was still no better after the week and I had a skin biopsy done the results came back as puppp (puritic urticaria papules and plaques of pregnancy) a pregnancy rash not eczema!!!!! (My blood allergy tests came up negative I wasnt allergic to anything either). I was put on steroid tablets (pred) and for the first time I could see an improvement in my skin the steroid creams helped too once id had my son they decided reduce my dose of pred because the rash is supposed to go after the pregnancy is over but once the dose was lowered my skin would flair and nothing but pred would calm it, I tried puva treatment and also immunosuppresants but nothing worked, eventually I had to come off the pred ( I had gained lots of weight and was having horrible mood up and downs) and my skin seemed to be doing better I was using doublebase and betnovate . For the next 9 and a bit years my skin continued to flair on and off on a regular basis and it drove me mad not knowing the cause I had a patch test done again no allergy was found so why was I flairing, now bringing you to the present I stumbled across red skin syndrome and the itsan site and everything fell into place finally I knew what was wrong with my skin the steroids had damaged it. Ten years of using hydrocortisone then betnovate like a moisturiser head to toe had got me addicted (well i think I was actually addicted within a few months and my pregnancy rash did go after birth and I was left with tsa instead and ive been feeding it all this time) I couldn't belive it but it made so much sense as to why I couldnt go long without using it. Once id done all my research (read through itsan.org and other people's blogs and found an amazing support group on Facebook I ditched my steroids.   Now the healing begins x