YK - eczema

I can relate too. I have psoriasis which is brought on by stress and had a terrible outbreak while studying for my mock GCSEs. The doc prescribed coaltar soap, bath stuff, shampoo and cream which I had to apply several times a day - I stunk to high heaven. I came in for a LOT of flak at school, bearing in mind that I was already called "cripple" by some of the crueller boys cos I limped pretty badly. I don't even think the coaltar did any good - it just went away on its own eventually. Now I only get it on my scalp with any regularity, but odd patches will appear elsewhere if I'm stressed - tellingly, a patch appeared just above my eyebrow a couple weeks before the wedding, and it's still there now...

Mine went away during early childhood thank God. I think it was less visible on my skin as i'm brown so i didn't get bullied about that. (I was the only brown kid at school, so i guess that was the more obvious thing to go for ;-).

It was pretty bad behind my ears and I used to get the odd patch behind my knee. but now it seems to have shifted completely.

I've had Pityriasis Rosea on a few occasions in my twenties though. It flares up when i get stressed and is horrid.

One of my best friends get it really badly and it makes me sad. At one point it was driving her so crazy she couldn't sleep and was in constant pain. My dad also suffers with cracked skin, if he washes up or goes out without gloves on in the winter he ends up bleeding. I only get that if the winter is really cold and I forget to look after my hands. My hands and legs look awful at the moment as they're so dry but it's not eczema per se. It's so sad to hear that people suffer so badly, from the original problem and from the people around them

My brother had it very badly when he was a baby, he had to go to Liverpool Childrens Hospital for coal tar treatment. He's 22 know and still suffers occasionally but only mildly..Once he had it in and around his eyes and he had to wear an eye patch. He made a very cute 5 year old pirate but gosh did he suffer!

I had eczema as a child - up to the age of about 6 but weirdly I don't remember it at all. My mum says I had special creams and stuff for the bath but doesn't sound like it was ever as bad as yours SW. According to my mum we went to blackpool on holiday (in those days going abroad was unheard of!) and I went in the sea and when I came out I said my skin felt funny. She took me straight back to the B&B expecting an eczema break out but instead overnight the existing patches started healing and within a week I was eczema free and have been ever since. My mum thinks it was sea water but having seen the sea at Blackpool I'm thinking there was some chemical being spewed into the water that burnt it off ?

Its so sad that children or in fact anyone has to go through this. Particularly with the increase in focus on appearances with social media. I was thinking this the other day when we were watching The Undateables. It does make me sad how society can be cruel to those with obvious disfigurements and ashamed to be worried about wrinkles and other such things when people are coping every day with quite serious disfigurements and painful conditions.

After 30 years I still suffer horrendously with eczema. As I write this I can barely make a fist with my right hand, as when I do the skin on the knuckles on my fingers cracks open, just as it starts to heal, boom it cracks again. It's a relentless, perpetual cycle and drives me insane. Not only does it hamper me every day with simple things like carrying shopping bags or holding a steering wheel, I think it looks vile.

I hated having to show people my engagement ring as it means they look at my hands, on the wedding day hand photos of the rings were banned!

Its much better than as a child when I'd also be wrapped in bandages, hands tied behind my back at night to stop me itching, no showers allowed, only baths in special emollient as even water set me off. The bullying was horrendous, kids are too cruel.

Anyway, enough wallowing.....SW PLEASE tell me the name of your magic cream. My doctor will no longer prescribe my reliable Synalar as my skin is so thin and damaged from 25yrs of use! Instead each time I get prescribed something he promises will work.....it never does.

Oh, love, I really feel for you.

I've had a look at the stuff I have, Diprosalic, compared to the stuff you have - they are both topical corticosteroids. Mine is pretty strong I think, so if your GP is saying your skin has thinned as a result of the Synalar then he may say the same about Diprosalic. Diprosalic reduces inflammation and also the dryness (or "scaling", as it says on the nhs website - blegh!)

Really helpful info on this website about it: https://www.netdoctor.co.uk/medicines/skin-hair/a6589/diprosalic-ointment-betamethasone-salicylic-acid/ ... I too had a different cream every time we went to the doctors - this stuff worked immediately and has kept my skin good since (throughout my adult life) ... I only use it about once a week now when I see a patch appearing and then it's gone within a day or so.

It made me a bit sad reading this, but also nice to know others have similar experiences. It's also given me a bit of a kick up the bum, because i know there are things i probably could do to help myself, but i don't because i feel like I've tried everything and nothing works. I get tired and disheartened with it, and i don't like trying new remedie any more because I've had so many disappointments in the past i feel like I'm setting myself up to fail.

SW I too had the bandages as a child. I was diagnosed at just 8 weeks old and from then to my teens it was head to toe, including my face. Apparently as a toddler my face used to crack and bleed every time I smiled. In my teens it cleared from my face and never came back there, although I do still get perioral dermatits regularly which i find embarrassing as well as u comfortable as i got for 3-4 weeks at a time with a 'beard'of flaking white skin round my mouth.

There has never been a time in my life when my hands and feet have been free of eczema. I have plastic handles designed for old people with arthritis that you attach to shopping bags otherwise carrier bags pierce throuh my skin when i go shopping and i totally relate to not wanting to show off your rings/have photos because of the scarring. I usualy also have it to some degree on my shoulders and back. I know im in trouble when it spreads to my legs and tummy as that's when i know I've lost control of it. I don't wear dark colours because the flakes of skin that either rub off or are scratched off show up against them, i don't wear a lot of very pale colours because it shows up when i bleed onto them, i can't wear delicate fabrics because my rough skin will pluck and pull at it or I'll rip a hole in it if i forget what I'm wearing and absentmindedly scratch. My bedding constantly has blood spots on it from where i scratch in my sleep. Imagine wedding dres shopping! What, me? No, i cant wear white lace! Don't you have anything that will cover the scarring on my shoulders and upper back? Arrg! Although i did finally find my dream dress and yes it was white lace with a keyhole in the upper back........and i felt fab! Meeting new people and shaking hands is embarrassing as i know my hand feel rough and scratchy.

Salt water is renowned for being great for eczema, although it hurts like hell! I try to have salt water baths at least twice a week, but i should really be swimming in the sea (note to self). UV is also really helpful. I was once prescribed UV light therapy and it was amazing but very disruptive in terms of time off work and travel to the facility, however the consultant told me that they weren't allowed to officially promote it, but a weekly sunbed can be beneficial in severe cases like mine. I tried it and found it helpful in the uk and now find the sunshine one of the major benefits of living in NZ.

Similarly to you superhanka i have found that the only thing that really works are the top band topical steroids. Sadly i am yet to find a doctor who will prescribe them for me on a repeat basis for the same reason you mentioned, so for now i am stuck in a cycle of major flare, trip to the docs, oral and topical steroid blast then trying to maintain the improvement with inadequate medication until the next flare. Typically its about an 8-9 month cycle. I'd love to try taking a constant low dose of prednisone (say 2.5mg daily) to see if it will keep things under control, as prednisone is like a miracle cure for me when i have a flare, but again i can't find a doc who'll let me try.

A lot of this post sounds like oh, woe is me, which it's not meant to. Yes it's constantly there, and it is painful, and the itch drives you mad, but there are people who have it worse than i do, and there are far worse illnesses out there. I can pretty much do anything i want to, so while it might bug me, it's not life limiting and debilitating.

Yk I really do feel for you, it's so horrible to have to live with. I used to be on prednisolone (which I assume is the same as you mentioned?) a lot as a teenager for my asthma, I remember the doc saying my skin would clear, but I saw no difference. The last batch of prednisolone I had, I bought over the counter in Vietnam when I had a bad asthma attack there.

Have any of you tried Dead Sea Spa Magik? It uses salt from the dead sea and has lots of minerals that are meant to help the skin. Most of the products are under £10 and range from bath salts to body lotions and hand lotions. It's highly recommended for Eczema and a lot of people who use it have said how fantastic it is. I'm lucky in that I've never suffered like any of you. I just know of the product from where I work and hear customers saying how much they love it.

I use this underwear along with steroid creams and it's expensive but I find it helps http://www.dermasilk.co.uk/benefits.htm

Thanks for the reply SW. The doc stopped prescribing synalar a few years ago now. However, my 96yr old granny had a tube of Mometasone furate lying around so my mum suggested I try it. Again I think it's a topical steroid which is why my doc won't prescribe it, so rather naughtily I use my Gran's. I don't rely on it but I know it will cure me in no time if I have a flare up.

If I'm honest I'd like to explore my environs and identify WHAT causes flare ups. As a child I wasn't allowed dairy, only goats milk. But I don't seem to recall this helping or hindering.

I avoid perfumed things & biological powder etc, I just wish I could put my (scabby) finger on it.

YK, I found your post so moving and quite upsetting. I know there are worse things in the world but it really can be so all consuming and demoralising at times. It's kind of nice in a weird way to know other people suffer (I hope that has come out right, you get what I mean I hope). I hate it when H snaps at me to "stop scratching, it'll go away" NO IT WONT, scratching feels so good but I hate the after effects.

YK I've just reread what I wrote. I don't mean it's nice to know you're suffering, more it's nice to know someone understands what it's like. I wouldn't wish it on anyone.

Superhanka, I know exactly what you mean, don't worry! I feel the same.

I am currently reading a book called The Eczema Diet. I bought it about 4 months ago, but it's this thread that has inspired to actually read it. (One of those fear of failure things, the disappointment that 'it didn't work for me' is worse than not trying.) 30 years of failed remedies has made me quite sceptical, but I'd heard good things about this from a variety of sources and as it's a relatively small investment money and time wise I thought I'd give it a go.

Diet definitely plays a part for me, I have an allegy to egg, and an intolerance to dairy. I know that alcohol and junk food don't help either. When I was little I couldn't have any cow milk, but in those days supermarkets didn't sell many if any alternatives and I used to get goats milk in plastic pouches on prescription.

I'm still reading through the science of it, so I haven't got to the diet part, but so far the science makes sense and comes from credible sources. The book claims that the diet will completely cure eczema and over time you can return to 'normal eating' without the eczema recurring.........I'll let you know how I get on.

For anyone interested the top intolerances for eczema sufferers are: hens eggs, peanuts, dairy products derived from cows milk, other nut varieties, sesame seeds, wheat and soy. If you don't want to do the diet in full, start with excluding one item at a time from the list for a couple of weeks while keeping and itch diary or body map should help to identify your own triggers.

YK that's excellent ... keep on it ... post back here regularly with your progress and we'll help to keep you on track

I was diagnosed with Oral Allergy Syndrome (also known as Pollen Food Syndrome) which can be linked to eczema - basically, foods with skin (tomatos, apples etc) which are eaten raw have a certain type of pollen on them to protect themselves from insects, they make my mouth blister and sore - I can eat the odd tomato in salad, but if I have too much my mouth feels like it's shredded and my lips can swell. The worst case I ever had was when I ate freshly cut pineapple and my entire face swelled up. Oh and when I bought a bay leaf tree for the garden once, carrying it from the car to the house - i broke out in hives and was having an asthma attack within minutes - I was in hospital for a week.

I'm coming round to the relevance of this, honest!

When I was being tested for all these allergies, which led to the diagnosis - among other things, they said I was allergic to ALL kinds of nuts; they tested for all of them and they all flared up. I've eaten nuts all my life with no issue - I think it's possibly related to the eczema thing rather than one of those 'proper' nut allergies.

Just interested if anyone else with eczema has OAS/PFS? How bad is it?