Having a Rant But Advice Would be Appreciated!

[ncn8]

I have had eczema all my life which has got worse in the last year or so. It is now all down my legs, buttocks, hands, wrists, neck and sometimes back. My legs are constantly itchy and sting and often I can't help scratching until it bleeds (despite my best efforts not to). My hands are especially bad and not helped by the fact I work in a healhcare profession dealing with patients which means during the week I wash my hands around 30 times a day just at work, never mind when at home. Have tried something called Glove In A Bottle which is a lothian which acts as a barrier but found it made my skin itchy. I use E45 Emollient Wash which I have found better than regular soaps but still not that great and have recently been told by a doctor that E45 isn't great for people with sensitive skin!! But of course, different things work for different people. Even if I manage to avoid soaps on my hands (which is fine when at home but not when visiting friends or out in public places) there doesn't seem to be a decent shampoo out there that doesn't contain Sodium Laureth/Lauryl Sulphate (a well known irritant) so if anyone knows of one please let me know!

My self-confidence has been very much affected, I'm in my early 20's and when those around me hit the town or go to parties in the latest dresses or skirts I need to try and tailor what I wear to what my legs are like at the time. When I'm out with friends for coffee or drinks I have to remember to use my left hand (even though I am right handed) when picking drinks up etc as this is my least affected hand and therefore saves the embarrassment of my 'bad hand' being on show. My partner is extremely supportive and always tells me I am beautiful but I have been in floods of tears in front of him before during a particularly bad flare up when I was in so much pain, so uncomfortable, felt so unattractive and so fed up with it.

Due to have a second patch-test in Jan after insisting to my dermatologist that something more was done when yet another high-strength steroid cream was passed my way (had a patch-test several years ago which showed an allergy to nickel which I already knew about) so in a way I'm hopeful something else will show up so I know what to avoid. Have tried eliminating dairy before but only for about a week as I found it so restricting and didn't find it made much difference anyway. Have thought about doing the YorkTest Food Intolerance Test but would be interested to find out if anyone else has used this and to what avail? Have mentioned the idea of food being linked to my eczema (also have mild asthma and mild hayfever) to different doctors before but this has always been dismissed almost even before I have got my sentence out!

Sorry, just having a bit of a rant to get it off my chest but any advice would be much appreciated.

[donna86]

Hi, I know exactly how you are feeling, have been in the same boat as you, being covered from head to toe and have spent so many sleepless nights scratching myself till i bleed then your at step 1 again and its a vicious circle. Im on a course on light treatment at the mo and am getting really good results from it have seen a big difference.
the only bit of advice is waitrose sell shampoo and conditioner which doesnt contain sodium laureth there are a few different makes they have which are about 7 pound each. One I like is called J.A.S.O.N
hold in there and think positive I know its hard try demanding the light therapy coz it has worked for me
hope you get on ok
x x

[jadeypie]

It sounds exactly the same as for me! I have also had bad eczema all of my life, I am 21, but am going though a persistent flare up at the moment. It started about 2 and a half months ago when the wether got colder and just hasnt got any better despite trying everything. I have tried topical as well as oral steroids and lots of different antibiotics but as soon as I finish the course it just comes straight back. I am trying elidel at the moment but it doesnt seem to be doing a lot, have you tried this? I am hoping it will be the miracle cure but I am fast losing hope which i know wont help as I need to stay positive but it is so difficult. I have it all over my hands, arms, chest, stomach, neck, legs and some on my face. Sleeping has become a major problem. I am awake pretty much all night, either scratching or in pain from where I have scratched. I have tried antihistimines but they dont do a lot or they conk me out so I cant wake up in the mornings. In the mornings it is also really sore and painful. I have seen a specialist but she just gave me elidel. I am going to try and get light treatment next time i see the specialist. I am hoping to get a allergy test soon but apparently you have to wait ages. I have also tried not eating dairy for 6 months, chinese herbal medicine and various homeopathic remedies and wearing gloves/bandages when I sleep but I find it even more uncomfortable.
It is just so frustrating! I have had it this bad before but it usually responds well to treatments.
And I know how you feel at work, I am a waitress and it is horrible having bloody scabby skin whilst serving food. And of course I also have to wash my hands all the time at work, argh!
My boyfriend is also very understanding, I have cried many a time to him and i keep him awake a lot at night when i cant sleep but that juts makes me feel really bad for him.
Iv tried J.A.S.O.N. products, the lavender moisteriser is really good, quite strong and thick. and smells nice, hurrah! im fed up of al these smelly creams and emollients.
Another thing I have just started trying is taking aloe vera juice 3 times a day, a friend suggested it. you get it from holland & barrat ( i got it last week and it was on offer for half price).
hope theres a little bit of comfort to hear that someone else is going through the same
Jade

[sherriw8]

My mother and some of my best friends children have suffered from eczema for years and have never found anything that works. I especially don't like the prescription drugs that are prescibed I know they are not good for the body. I did some research and came across this wellness company that has a product specifically for eczema. I became a member and I bought it for my mother and my best friends and let me tell you this has been life changing. Within a week of using this product they saw significant results. This wellness store manufactures products that are safer, better, cheaper, and healthier (no toxic chemicals and naturally derived). I also bought some for myself because I suffer from severely dry skin to the point my hands bleed. I tried this product and for the first time my husband said I had soft skin, boy he was in shock! This wellness store also has a laundry detergent that is also has been great for the eczema sufferer. All the products we use on a daily basis are full of toxic chemicals and they are very harmful to our families. If you want more info on these amazing products shoot me and email at sherri_w8@msn.com.

[asianwriter]

Hi, i totally empathise with you and i know exactly how you feel.


ive suffered with eczema all my life as well, and im in my 20's as well. im not with anyone, but i do wonder what my partner would say and how they would feel being with someone who has eczema. i dont find myself attractive and i am very self conscious of my skin. it makes me depressed at times and i find myself looking at other people's skin and wondering why mine isnt like that.

i recently went on holiday to india and i saw a dermotologist there, who prescribed me cetaphil. is that available in the UK?


if you have a problem when washig up, use busy bee latex free washing up gloves. they are a peach colour and if i remember, they are cotton lined. i found that these have really helped. also, use surcare washing up liquid.


hope that has helped, i knw i haven't offered much advice/help. im still searching myself. when i do though, i will be sure to let ppl know.

take care.

[CinammonWaffleJ]

Instead of going through the numerous posts all about different things, I thought that it'd be a lot easier to put everything I'd like to say into one post. Hope this is ok!

I was born with slight eczema, barely noticed it at all sometimes. When I hit my teens, it did flare up a bit more often, but it was put down to puberty. I managed it by using Body Shop Aloe Vera Night Cream, which worked for about 2 years I think.

As soon as I entered my last two years of school and my GCSE's, my eczema became unbearable. Nothing seemed to work to calm it down. I was getting infection after infection and struggling to get to school not only because of the pain, but because of the bullying that came with it. When my Mum asked the Doctor about sending me to a Dermatologist, the idea was snubbed and we were told there was nothing they could do that I wasn't already doing and that I'd probably grow out of it. Despite the fact I had blisters the size of 50p's on my thighs and it was almost impossible to get dressed due to the agony I was in and that I seemed to be allergic to all the emollients being prescribed FOR TWO YEARS!!! So I was left using Hydrocortisone cream constantly for years as well as antibiotics, steroid tablets (can't remember the name of them now). Anywho, when I'd finished my exams and started college, the problem seemed to fade away, I still needed to keep a tube of Hydrocortisone on me, because I did get the odd flare up on my hands or body. I finished college happily, a confident normal(ish) person and moved away to University for a new start. For the first year or so, the bullying and the eczema were a long forgotten memory and I could be the confident girl that I should be rather than the shell of a person I was during school.

But...

Just before my 21st birthday last year, the eczema came back with a vengeance as well as all the awful memories of the bullies and what they'd said. My confidence that had taken so long to get back after I left school vanished, I became like a moody teenager again! It caused problems for me with work, my boyfriend and I broke up so many times because of my total change in attitude it was unreal. So I got myself to the Doctors (a new Doctor I might add) and told them as soon as I walked into the consultation room that my skin was infected and exactly what I needed to treat it. I've got to say it worked really well. Until I came off the steroid tablets.

At this point my entire outlook on life changed and I wouldn't leave the house for fear of being seen by anyone with the potential to say something about my skin, I'd decided I couldn't go through the bullying again. I lost contact with the friends I had made since moving and became completely reliant on my boyfriend. Not long after this I realised that I needed help with how low I was feeling. It took about 3 months for me to actually make the appointment to go see the Doctor and tell her that I thought I was depressed. No one wants to admit that to themselves, let alone anyone else right? I ended up being put on a drug called Citralopram; a none addictive anti depressant. I have to say it has helped me be happy again! The thing is my eczema is still fighting it's way out and is still affecting my life. I can't go to work coz it's infected, I can't go out because I hate the way I look. At the minute I won't even walk around the house without a long sleeved top on because I don't want anyone to see it.

So, after my last infection (before this one) I ended up back at the Doctor, who asked me as soon as he saw the state of me "have you ever been referred to a dermatologist?!" I could've killed someone then! Thankfully my new Doctor does think that I should be seen by the Dermatologist! I have my first appointment on Monday which I've waited for since October/November of 2010. I'm hoping that they can fix me! I'm sick of having to pay for prescriptions I can't actually afford because I'm off sick a lot and I'm annoyed that because it's not recognised as a "Disability", those of us that do suffer with extreme eczema don't get the help we need. I'm also incredibly angry at that Doctor that snubbed the Dermatology idea all those years ago. I feel very let down that they just wouldn't consider the idea. Maybe if they had sent me, I wouldn't have been bullied like I was in school, maybe I'd be able to deal with the flare ups better because the bullying wouldn't have happened.

So there you all are. That's my rant to you. If you've managed to get through this HUGE piece I thankyou so much!
xxx

[lucyconnor]

Hi, I'm really sorry but I feel I need to say this...don't get your hopes up about the dermatologist. There isn't actually an awful lot they can do either. My son's is a complete waste of time, and when we came out of our appointment on Monday just gone, we even considered not bothering making another one. We see him every 6 weeks because the eczema is so bad, the norm is every 6 months, but he hasn't helped with one single thing a yet. We decided to carry on seeing him for now. Obviously not all of them are the same, but please do not expect miracles from your dermatologist.

As for what you were saying about Eczema not being recognised as a disability, I completely agree with you. It really gets my back up. I applied for DLA back in November but still haven't heard anything as they are requesting written reports from the GP, dermatologist and anyone else they can think of because at the end of the day "it's only eczema". I wish people could see the state of my sons bedding just half way through the night. If my house ever got raided for any reason, the police would think it was a murder scene. I wish they could see his little tears strolling down his face every hour when I put his cream on.

[longterm]

NI IM LONGTERM IM NEARLY 53YRS OLD SUFFERED WITH ATOPIC EXCEMA FOR APPROX 52 YRS
I HAVE EVERY SYMPATHY WITH YOU CAN I JUST SAY I ONLY WANT TO HELP I EXPERIENCED ALL WHAT YOU HAVE WHERE OTHER PEOPLE ARE CONCERNED LIKE BULLYING THATS THEIR PROBLEM TROUBLE IVE FOUND WITH TREATMENTS IS THAT WHAT MAY WORK FOR ME MAY NOT NECESSARILY WORK FOR YOU HAVE YOU READ ABOUT EXCEMA TREATMENTS DONT TAKE MY WORD FOR IT BUT ITS WHAT RESEARCHERS HAVE COME UP WITH

IVE TRIED MOST TREATMENTS I USE AQUEOUS CREAMS THIS PROMPT TO FIND ABOUT IT EVEN TRIED CHINESE TREAMENT WITH NO REAL EFFECT

IVE NOW TRYING NATURAL REMEDIES ILL LET YOU NOW HOW I GET ON MY BROTHER LIVES IN MALAYSIA HES SENT ME FOR XMAS A NATURAL SOAP KNOWN AS MOOR ITS SUPPOSE TO BE FOR ALL SKIN TYPES PLEASE PLEASE BEFORE USE ANYTHING NEW CONSULT THE PROFESSIONALS

SORRY HOPELESS AT TYPING

VERY UNDERSTANDING
LONGTERM

[lara]

Hi

I've had eczema for 40 years and mine started when I was 15. I ended up in hospital at that time as it was so bad. I know it's easy to say but don't give up. There has to be a cure out there. I have also been using hydrocortisone mainly on my face which has thinned my skin but when it is really bad and sore and painful I haven't really thought about side effects. When my eczema started, there were no alternative treatments and there was no internet. Now there is a wealth of information and support. I have found creams that worked for a couple of weeks then just stopped working.

Chinese herbs helped to clear up a really bad flare up two years ago and recently a new cream I tried has made a massive improvement. I hope you find something that works.