Talk to me please about my eczema - any other sufferers about?

[doggiesayswoof]

I've suffered from eczema on and off since puberty - didn't have it at all as a child. I have been pretty good since getting PG with DC1. (nearly 7 years)

Last couple of months though it has come back with a vengeance and is not clearing.

It is all over my body, including my neck, face, eyelids, ears, lips etc, I am not sleeping, and I'm starting to get depressed (had problems with depression in the past and when my eczema is bad my self-esteem hits the floor)

I can't shave or wax because my skin is starting to get broken = trousers or opaques every day

I can't wear any make up.

I'm using Eumovate - once or twice a day for the past 4 weeks now. My skin hasn't got worse or better. It starts to get worse straight away if I miss a day of the cream.

I am taking antihistamines at night but it's not stopping the itching. My sleep and DH's is seriously disturbed.

I have been to GP 4 times, 3 different doctors. One gave me a cursory glance and the other two didn't even look at my skin. They are clearly just going through the list of creams. They are not interested basically.

I think I am allergic to epaderm - last visit to GP I got a huge pump bottle of it to use in the shower and my skin got worse.

My skin has always been v sensitive and dry and I always have to be careful what I use on it but atm I can't find anything I am not reacting to.

I've never seen a dermatologist or had allergy testing and I don't know if it would benefit me.

I'm so down and I don't really know where to go from here.

OMG that was long!

I think you should push for a referral.

I haven't got particularly bad exzema but after ds1 was born (about a year after) I got a very bad patch on left hand, and also on feet. Very dry skin. I saw a dermatologist who prescribed cream that the GP hadn't (Not sure what) but who also did blood tests and found I was iron deficient, which apparently can have bad impact on skin.

Was then fine for about 4 years, until recently (ds2 nearly 1) and the patch on my hand is back and skin dry again.

Have you tried simple aqueous cream from the chemist? I find this is the best thing for dry ezcema. You need to use it every day to keep the skin hydrated.

I have used aqueous cream in the past - my skin reacts to it and I don't find it helps.

pooka - did your GP refer you to a dermatologist then? I've asked to be referred so many times over the years, and I've always been refused.

I haven't pushed the issue with the practice I am with now - maybe I should.

Part of the problem is that my skin doesn't look that bad - it's a bit red and if you look closely you can see it's dry and "thickened" - but the GP who actually managed to look at it seemed underwhelmed.

It feels much worse than it looks.

I would say definitely worth seeing a dermatologist - get the GP to refer you.

However be prepared that the specialist may also just recommend Eumovate or some other aqueous cream daily, plus a steroid cream for when it's really bad (it helps, but too much use has bad side effects eg skin thinning and hormonal effects).

It is also worth considering diet changes. Some people find ezcema is linked to dairy - could you try cutting that out for a couple of weeks (say) and see if it helps? Also, certain supplements can help with skin problems if you have deficiencies in those areas - for example Vitamin E, Vitamin D, and fish oil capsules are all good. A good multivitamin could be a place to start.

I am not an expert on any of this but the web will contain loads more information.

Hi doggie, i sympathise as although my eczema isn't as widespread as yours, it can make life a misery at times.

The doctors are being crap, you need to ask to be referred to a specialist dermatologist. This can take a while so the sooner you demand the referral the better.

I have had varied experiences with the derms. One visit they advised me to try wet-wrapping (involves putting steroid/other cream on affected areas e.g. legs, and wrapping with damp tube bandages overnight) - it sounded horrible but was fine, allowed me to sleep and literally healed up my skin which was amazing.

But more recently I've had a problem with specific patches of eczema and, although they have provided things to stop it getting worse, have not had any luck isolating what exactly it is I'm allergic too. I know it is something, but not what!

x-post.

You need to tell them how bad it feels. If it gets all leathery it doesn't look "bad" per say, but feels like you're wearing a thick coating of itchy rubber?

Yep pretty much Elephants. Leathery, thick, itchy. It's not cracked except on my hands and ears, weirdly.

I am not good at being assertive with GPs and you can tell they just want me out of the room. Last time I went she had started typing a prescription within 10 seconds.

It's so frustrating. My mum had eczema when she was my age too and she ended up having allrgy tests which showed low-level allergies to loads of things - almost everything they tested for (it was environmental, not food). So that discovery didn't really help!

You need to tell them about the impact it's having on your life. Point out that you've tried a lot of things, but your day to day life is being affected (print your post above) and you really want to see a specialist. Insist. It's ok the worst they can do is say no (and you've had plenty of practice of hearing that).

Thanks minipie I missed you post there. I've started taking oil of evening primrose capsules - there must have been a study on them a whild back because years ago I was prescribed them and they did help - GP looked blank when I mentioned them so I've started buying them myself.

DH thinks I should try cutting out dairy too. I suppose it's worth a try. It would be quite a big change for me - I do enjoy my dairy products.

Elephants you are right.
I'm going to ring and try to get an appointment with the senior partner, who is elusive (because everyone wants to see him) but worth waiting for because he's a good listener.

Hi. Yes, absolutely the GP referred me. Perhaps because first happened when I was in 30s, could have been hormone-related, needed detailed bloods and exam?

I do love my GPs though - they are ace.

Hi I sympathise. My son who is 12 has the same as you...around his eyes,on his scalp, top lip, chin, neck, all the other usual places and is being seen by a specialist soon. Please push to see someone, they wont refuse you im sure. Can I suggest bathing your face in mineral water and using E45 cream to wash in but not a tub with a lid, a pump is more hygienic. Use cotton wool and not a flannel, as they have been washed in detergent. He uses the big square ones and immediately moisturize straight after but dab and don't rub the cream in. Get plenty of fresh air to your skin and as soon as you feel it drying out, moisturise. Keep a tube of E45 cream in your bag but make sure your hands are clean before you apply. Try and stay away from dairy. My son used to drink gallons on milk and thats when he started to flare up. Please dont wear tights they will really not help you as they are made from polyester and not cotton. What about if you wash your body in cold mineral water and moisurize yourself and sit in the garden and get the sun to your body as the sun is a really good healer but the trick is to keep yourself cool as getting hot can flare it up...so get a jug of ice cold drink to keep you cool and place some ice packs on your face every now and then and on the parts that have eczema but keep moisturizing when you feel dry. I know this sounds a bit crazy but my son does this and it does help make it look and feel better even if for a day. Have you got anti-dustmite bedding including your pillow. It its waking you up at night what about creaming up and putting a bandage on your arm I use a tube support bandage for my son that just slips on and off. Check your washing powder is suitable for sensitive skins if you are wearing trousers everyday. Take care and good luck xx

derm and allergy referral are definitely worth pursuing

another sufferer here, you MUST be seen by a dermatologist!

i use eumovate daily on my face, if i dont then my eczema just flares up and even when using it, it often does anyway. to moisturise i use unguentum M this is a thick cream, can feel quite 'heavy' but at the moment seems to be the only one that works and i have tried HUNDREDS, like you my skin is always dry and sensitive and i have to be very careful with products, dont wear make up, have to be careful washing up, can just about use ecover, but anything else makes my hands dry, cracked and sore and horrendesly itchy.

i take piriton at night, it doesnt do much but as i am preg its the only thing i can take, i was prescribed stronger antihistemines from dermatologist when not preg/bfeeding but they can knock you out a bit, literally i had some that i would take and half an hour later i would be asleep!

i have to hoover everyday, change my bedsheets and hoover my bed every few days etc, i try and drink lots of water and sometimes where cotton gloves to bed to help stop me itching... i or my partner at times sleep seperately just so one of us can get some decent sleep!

it can and does get me very emotional at times, at the moment mine is fairly under control, normally it gets worse in pregnancy but hasnt done this time! but my hands, arms are sore and dry and my face can vary from minute to minute literally! oh my ears are cracked at the moment as well, it can feel so sore and uncomfortable, i dont think people can really understand how it feels to feel so uncomfortable in your own skin, there are times when i would like to sandpaper my skin its that itchy!

i know that i am allergic to pets and intolerant to dairy products, dust housemite and grass and tree pollen, also some nuts. i had tests done years ago and i can also tell quite quickly when i am reacting to something as i often get hayfever type symptoms, watery itchy eyes, runny nose, itchy inside my mouth and throat as well as itchy irritable skin.

it may be worth keeping a diary on where you go, what you eat, what you are exposed to etc and see if you can pinpoint anything that is making things worse.

sorry this is long, i could go on, but i really think you need to be seen by a specialist, i want you to know that you are NOT alone tho, it sucks it really does. push for a referral and try not to be fobbed off, i once got told my a dr when going in for infected, horribly sore eczema, 'well its not life threatening is it' like that somehow means you have no right to complain!

it can be intolerable living with eczema, i have had people refuse to shake hands, or take money from out of my hands, for fear that they might 'catch something' so it can and does impact on your self esteem.

(((doggie)))) have a non mumsent hug! and push for a referral.

btw evening primrose is meant to be good, but you have to take a high does, i used to get it prescribed but the evidence was anecdotal so NICE said not to prescribe it anymore, tho most dermatologists would say it is worth taking. i try and buy it when its on offer etc.

aveeno products can also be good and can be got on prescription, i would try and avoid anything with LANOLIN in, it is known as a key irritant for eczema sufferers, yet is in lots of moisturisers etc.

Thanks for the new posts!

4madboys thank you for taking the time to post all of that. You sound v similar to me! (except I was lucky and got better when I was pg)

Piriton is rubbish, you're right. I've got the extra strong ones now, they do knock me out so I am sleeping better. Groggy in the morning though.

Good news is that I saw a locum and she took me more seriously and agreed to refer me and also gave me a stronger steroid (Elocon) which I've had before and is v effective. It will be about 4 months I'm told before I actually get to see a dermatologist but at least the process has started.

I do take evening primrose, like you I used to get it on prescription but it stopped. I've got some just now - Boots offer.

After I saw the GP my skin got better overnight - with the new cream - but now has got worse again. No apparent reason, nothing has changed, not eaten anything different etc. It's so frustrating!

debbie I think I do need to try cutting out dairy for a bit. I'm allergic to E45. As I work f/t it's not practical for me to reapply cream during the course of the day so my skin is terribly dry by the evening.

I've suffered all my life- poor you. Sounds like a really bad bout. But try not to despair because with me it's definitely related to my mood- if I'm stressed, anxious or sad it gets worse and that of course is a vicious cycle.

I use Diprobase as a moisturiser every day. It's rich and doesn't sting at all- I get it on prescription. I don't use Eumovate because that stings and makes it worse and I don't use anything like that in the shower because that makes it worse. When I'm going through a bad phase I use Simple stuff only in the shower/bath.

I'm pregnant at the moment so can't rever to my usual Betnovate ointment as I don't want it going in my bloodstrem but usually a higher steroid cream works on bad patches of skin. You can't use these on thin skin like your eyelids or face though.

Mine always gets heaps better in the sunshine. Though I know it's the opposite for some people. Can you talk to your doctor about going under a sunbed for 5/10 minutes to see if that may be an option?

The eczema society is a great source of support and information:
www.eczema.org/

I'm allergic to lanolin so can't have vitamin E stuff- makes it much worse with me.

The other reason not to despair is that I find that once a bad patch starts to heal it heals quickly.

Do let me know if there's more info or an further support I can give. I know exactly where you're coming from.

K x

I know some of my triggers. Lanolin, wool, lots of synthetic fragrances, lots of make up brands, pollen. I suspect dustmites too - I am crap at housework and I'm going to have to get better. When I think of the amount of dust under my bed...

I have had people look askance at my hands too. It's horrible when it's on the visible parts of your body and you can't cover it up.

KPidgeon, thanks.

I also find that the shower stuff I was prescribed was no good (and also it doesn't make you feel clean). I am using some green people shower gel just now but I think I'm reacting to it - it must be a reaction to the essential oils I reckon. I haven't tried Simple stuff for years, I might give it another go.

Sunshine used to be good for my skin, but I was in France last month (when it was already quite bad) and it got worse - I think the sun helps but being hot and sweaty doesn't!

It is definitely related to my mood too, but I've tried to tell doctors that for years and they won't listen. No evidence, I suppose, so they don't believe you.

oh i only wash with water, nothing else at all, no soap, or the prescribed soap substitutes that you can get, just water, not too hot and not too cold or that can trigger it to get blotchy and itchy!

i am also allergic to wool, never use perfume etc.

it is a pita but hoovering under the bed, hoovering the mattress and changing the sheets regularly does seem to make a difference with my skin. also only cotton bedsheets and obviously washed with a detergent you arent allergic too, i can only use fairy non bio, no others at all and when i go away i have to take my own bedding with me or else my skin will react.

re sun helping, i find DRY heat helps yes, but not when the weather is muggy/clamy that just makes it worse.

i lived abroad when little sardinia/cyprus and my eczema went away totally :)

i had UV treatment at the hospital, it was a pain, LOTS of trips to the hospital but it really did help, esp the extra strong treatment that i had for my hands, it got a little bit worse at first, you have to hang on in there and then it did go away and stayed away for months! :)

they have also recomended to me that there is a kind of immunosuppresent that they can give me (that they give to transplant patients) which can be a huge help in calming down the eczema, its a long term treatment but cant be used that often as there are implications from weakening the immune system and again it cant be used when preg/bfeeding but it has been strongly recomended to me. i may try it once i am done with having no babies, currently preg with no 5, our LAST one and so once i finish bfeeding etc i shall have a think.

also sometimes a short course of steroids helps calm my skin down, oral steroids i mean, i have had those a number of times, your gp probably wont prescribe them tho, it tends to have to come from a consultant. but they have really helped get my skin under control when its been at its worst.

and yes its definitely mood related, mine gets worse when stressed but then i get more stressed as its worse, its a viscious circle!

still at least you can see that you are not alone, hang on in there till your referral comes through, hopefully it wont take too long xxx

Have a look at this website. You may be shocked but its no creams/steroids etc. Im going to ask my doctor about it first.

www.allmothers.net/household-bleach-potent-treatment-for-niggling-eczema.html

I had very bad eczema from 0-18, was hospitalised a lot with it. Dermatologists etc simply don't know what to do with it. They manage it with steroids and the like, but your skin a) starts to rely on them and b) is damaged by their long term use.
There are so many different things to try -I think everyone you talk to will have a different experience of what works for them! But for me it was a REPUTABLE Traditional Chinese Herbalist. You can find reputable ones by going through the Register of Chinese Herbal Medicine - www.rchm.co.uk/Findmember.htm

TCM (Traditional Chinese Medicine) understands skin conditions VERY differently from Western Medicine, and they tackle the root cause, so now I don't need to take any medicine any longer. It made a massive immediate difference, but I had to keep it up for about a year to see almost a complete end to my eczema. I now get the occasional flare-up when I'm premenstrual or very stressed, but a couple of bags of herbs sort those flare-ups out for another year or so!

I had a friend who had very severe eczema, and she went down a different route - some sort of diet that totally eliminated yeast from her body, so no sugars, no alcohol, no bread and things obviously containing yeast. It was pretty hardcore, and she had to see a specialist to do it (privately - not cheap!) who also sold her lots of supplements, but hey, it worked, and a year and half later she's totally eczema free!

It might be worth searching around on the internet to explore both of these options and to see whether either of them might suit you...

GOOD LUCK with whatever you try! I know how disabling bad eczema is, especially psychologically. I am a very different person now I no longer suffer with it, but when I get those occasional flare-ups I get a glimpse of how badly my sense of self was affected by eczema. Fortunately I know now how to tackle it when it makes an appearance, and that it won't be around for long if I neck a packet of foul tasting herbs again!

Thinking of you....