Talk Health Partnership

[catjag19]

I am 14 years old and have been suffering with excma since I was 1.I get it all over my body except face and feet. Most of the time I have it pretty bad but some times my body is clear. I have had probably about 6 skin infections in the past year or 2 through scratching myself raw and have figured that I do this at night when I can't control whether I scratch or not. I use a range of different strong creams and take piriton some nights before I go to sleep to try and stop me from scratching, this rarely works. I put on cream 2 times a day + wear cotton, long sleeved and legged pjs.
Is there any teenagers my age or above that suffers from excma at all? I feel really scabby sometimes at school when i look at everyone else's perfect skin and then look at my scarred, red skin and it puts me down. I know I shouldnt but I do.
I have joined this site because I would like to find young people like me to talk to and maybe make me feel better about my skin problem. None of my friends have excma like me so i find that they don't really understand - except my best friend who had it when she was very young! My parents know that it annoys me but dont really understand either. The only person in my family with excma is my uncle but he doesnt look after his skin or make much of an effort but we talk occasionally about it.
It would be some comfort to talk to anyone with what I have and I will be happy to talk to people like me about how bad excma really is!
Thanks

[AnnaB]

Hi

I hope you find some support here. I do. I am a mum, both my 2 and 4 year old suffer greatly. Have you tried wearing cotton gloves at night. You can buy them on special eczema clothing companies, but I've also seen them in Tesco and Asda chemist. Do you have good medical support? Have you tried wet wrapping, that eases the night itch and has great effects on the calming and moisturising the skin. You could try a different antihistamine. My son takes cetirizine daily all year round daily without fail. Piriton may help you sleep but be careful it not making you feel rubbish. Anyway I'll not list all the things which you may have already tried, good luck finding a fellow sufferer/friend.

Anna

[catjag19]

Hey,
Thanks for writing to me (:

Aw, it must be really hard for you having 2 small children suffering. I do hope that their excma clears as younger children are known to grow out of excma.
I have tried cotton gloves, wet wrapping (in a 2 piece suit) and pull on banadages around my wrists and covering my hands. But I have found that I wake up in the middle of the night and the gloves are on the floor. Just a few days ago I wore my suit again after having a skin infection last week but woke up in the middle of the night very hot and scratching like mad. I then woke up in the morning and found lots of scars on my skin, especially on my arm. And for the bandages I tried them 2 weeks ago but had ALSO got hot at night because I have Hydromol (thick layer) and had scratched my wrists to bits. To be honest i am fed up with it all and just wish something would work! Yes, I have been seeing an excma children's nurse and will be again in 2 weeks so I shall ask her lots then as I cant get hold of her by phone today!
Whats the difference between Cetirizine + piriton? Isnt there a medicine that helps night itch too?
Thank you, I hope I do too. This site is very good for support + I feel better knowing that others suffer just like me and we can talk about it!

Catherine

[AnnaB]

My kids both take their gloves off too. So I use some light medical tape around the wrist, only on the fabric and not too tight but just enough to stop the glove slipping off the wrist over the hand.

We are also trying out Dermasilk suits. They help to control body temperature. The suits are 100% silk. Have a look at their web site, it seems your suffering and getting hot at night they may help and certain ones come on prescription.

Cetirizine and piriton work in different ways as when bad I have been told I can use both. You could talk it over with your health team.

[catjag19]

Aw, even though they came off last time I may try a hairband around my wrist over the glove or maybe socks. I have read on one post that some wear socks on their hands, doubt it will be any better than the cotton gloves though!
The suits sound good, thank you for the advice I shall ask the nurse about them. (:
I shall have to see about the other tablets too, but for now I shall take piriton anyway, hopefully it will help tonight!

Thank you very much ,
Catherine

[ironchef]

Hi Catherine,

Although I'm not 14 now, I remember what it was like to have eczema back then. It was tough because I felt like everyone was staring at me. I had it on my feet, hands, arms, and back of my knees. I too would always find my gloves in the floor the next morning. My mom even sewed gloves onto the sleeves of my pajama tops. Well....in the mornings, I would find my whole shirt on the floor. I was a Houdini! What did work was the following:

- Avoid foods that you are allergic or intolerant to. Have you been tested for allergies? Have you tried seeing a naturopath in addition to your regular doctor?
- Keep busy and active. I found that when I had a full day and lots of exercise, I didn't have the energy to scratch at night. DOn't let your skin stop you from doing the things you like. You'll have some days that you don't want to see anyone, but make those the rarer times.
- Try swimming. Despite my severe eczema, I became a lifeguard and swim instructor. It was great exercise, I had fun, and after being in the pool for an extended period of time, my itchy/red skin would dry up and be less itchy. After you get out of the pool, I'd take a shower and put on a water-locking cream (Glaxal Base and glycerin) immediately. I felt so much better.
- Sleeping in long sleeves and long pants drove me crazier with the itch because I'd get HOT in bed. As long as you have cotton bedsheets, you may want to try sleeping in just a nightshirt so you don't get too hot?

I hope this helps even a little. It takes alot of courage to live with eczema. Remember that you are brave. People with eczema CAN lead normal lives....have a great group of friends, be successful in their careers, and fall in love. I know, I've done it! I started dating my first boyfriend when I was 15. He cared for me despite my eczema. He saw past that and loved the REAL me. I know it's HARD most of the time...keep searching for what works for you. By joining this forum, you're headed in the right direction. Keep researching....

All the best....

Ironchef

[catjag19]

Hey Ironchef,

Thank you for taking time reading my story!
Yeah it is a very annoying thing having skin problems + being a teenager because i get it the worse in my year. I have a skin infection now + its all down to me scratching but I am controlling that now with socks over my hands tied tightly with hairbands at night. I havent had any new scratches for 3 days! Although I dont have servere excema patches I get the rashes and scars which is always a pain. Sounds like you went through what i did, did you used to find that you scratched for no reason?
Thank you for the list of things that worked for you! I havent ever had food allergy tests but maybe I should one day! You are right, I find that if I am very busy in the day I sleep all through the night and dont scratch!
I have always thought that swimming dries my skin out but I do love going! Its great that you have that sort of job, it sounds exciting and must keep you busy (:. I have to sleep in long sleeves because I wear thick, greasy cream at night but I have changed my duvet to a thinner one which helps lots.

This did help lots, just reading it and recognising that others have what I have makes it easier. And i have recognised that others have it worse than me and I am in someways lucky.
I totally agree with you that we can lead normal lives and plus its not always what we look like but the inside that counts! The boy sounds very nice and obviously loved you for who you are (:

Thanks for all the great advice and I wish you all the luck for the future. Yes, this forum helps LOTS!

Catherine

[MrsCizzi]

Hi,

I just had to write a reply to you and hopefully it can be comforting for you to read it. I would have loved to be able to be part of something like this when I was your age since I have always found myself quite lonely with my problems.

English isn't my first language, so excuse me if there are lots of spelling/grammar mistakes!

I am 33 and has had eczema since I was one, and your story could have been my own.

I used to be very self conscious about my skin, worried about what people thought I looked like and that always used to make me sad.

I am now a married mother of 2. I live a happy life and work as an elementary teacher.

Even though my skin still can drive me nuts, I am content and have accepted the fact that this is something I am stuck with for the rest of my life and that I just have to treat myself as good as I can to make it durable.

The worst thing that can happen to me apart from getting "normal" infections in my eczema is that I have cold sores (herpes simplex) and that can sometimes spread into my eczema and cause terrible infections.
Apart from that and my dry skin, it's the itching , and often it feels like "for no reason". I often don't even realize myself that I am scratching...

Night time scratching has always been a problem for me, but less of one since I have started seeing to it that I clean my hands and fingers carefully before night time. I never have long nails and always put ..what do you call it in English..alcohol gel (???) on my hands/nails. Gloves have NEVER worked for me, they always come off in some mysterious way. My skin infections are few and far between now and I think it might depend on my #clean nails".

Silk pjs (especially Dermasilk) have always been the best for me all though i prefer to sleep naked even though I am greased up to my ears in oily/fatty creams.

The only thing that helps me if I am having a super bad nettle fever attack (wrong words maybe, but what i mean is a really bad scratch attack) is to keep cool and to try to get my mind off my skin. Weird as it may seem, and still at 33, eating some ice cream and focusing on the ice cream in an almost meditative way can stop my attack.

Nettle fever attacks on neck and face, I some times stop with a numbing cream (called xylocain in my country), that makes me loose my sense of feel and stops the itching.

I have figured out that for ME, it all depends on what shape my health is in. If I am calm, happy, have no colds or other infections, if I don't have my period and if the temperature and weather is right, then I am at my best (of course), and then I am like any other person: I can swim in a pool without reacting, I can eat raw carrot, spray perfume on my body and wear a shirt with a tickeling collar!
But if I have a cold, is stressed or unhappy, have my period or what not, a loose hair against my skin under my shirt can set me off.

What I have also learned after almost half a life with this skin condition, is never to "under treat" my self. I have had my periods when I haven't been treating myself as I should, skipping certain steroids and being too lazy to put creams on. That's a no no for me. I have to face the facts that I need the treatments, if I follow them I end up getting better at the same time as I am open to try new stuff, prepared that it might not always work for me.

I have many trump cards up my sleeve that works for me, so please feel free to ask!

Take good care of yourself and remember: You're not alone

//MrsCizzi

[catjag19]

Hi,

Thank you very much for your great reply! I understood all of it so dont worry about your language, you totally know english very well!

Its funny how what I write relates so much to you at my age. I know what you mean by how your skin can get you down and make you sad. I sometimes look at other people's skin at school and compare to mine which makes me sad. But slowly Im learning that I can show my skin with T-shirts and shorts even if its in its worst state. Even though I dont suffer all the time with bad skin, at the moment I am. Well its getting better as I am taking tablets and the redness is going down slowly, thankfully!
It sounds like you get it worse than me as I never have had cold sores and have only had one terrible infection. I suffer from dry and sensitive skin and I, like you, scratch for no reason + dont even notice....
Like you (again!) I scratch mostly at night (or had been). But recently I have been going to bed with wearing socks on my hands tied tightly with hairbands. It does work and even If i do wake up scratching it doesnt harm my skin and causes no scars at all. But I scratch a bit in the day now WHICH I NEED TO STOP!
I only recently thought that clean nails could benifit my skin and stop having skin infections. I think that what your doing with the gel is a very good idea but its a shame and must be annoying that gloves wont stay on at all!
I wear cotton pjs in bed (long sleeved) as apartantley silk absorbs more cream than cotton which isnt good for my dry skin.

I suppose you are right that with saying when our bodies are healthy and we are busy our excema calms down and isnt so bad. But when Im stressed with exams or whatever then I tend to scratch alot more.
I have always been good with keeping my cream routines up and having a bath with oil everyday since I was very young and like you I think that my skin would deffinitly go down hill if I stopped. I expect its hard for you to keep it all up with a job, looking after your children and your house but its better to look after yourself, you'll always feel better for it!

Have you ever tried hair bands around your wrists when wearing cotton gloves or socks on your hands at night..?
Do you take any medicine to help you to stop sratching and sleep better at night? Do you ever wake up at night?

Thanks again for telling me about yourself and what you do to treat your skin. Yes, living with excema is annoying but we just have to get on with it, dont we?

Catherine

[AnnaB]

Hi

It looks like your getting some great support here. You mentioned you use a bath oil. Have you ever left this out and disolved your moisturiser into the bath water instead? Loads of it! My sons doctors always prescribed oils, we worked it out ourselves and the dermatologist now agrees the oils add an all over burning sensation and itch to his skin. Within 2 days the fire was turned down in his skin.