Just hoping for a bit of emotional support

[sarahecg]

I write this post after leaving my shift at work early because I am just so red raw that I genuinely feel like I can't carry on without breaking down in tears. I've suffered from eczema my whole life, there has never really been a time when i can remember having clear, soft skin. I am constantly cracked dry and bleeding and I honestly feel like it will never go away.
It's so hard to explain to someone how bad it feels when to other people its just the same as a rash or an acne breakout. My eczema genuinely rules my life, it makes me feel like I can't go out, most days I don't want to leave my bed because moving just leaves me in so much pain
I've been on various steroid creams non-stop for over a year now and I'm terrified of the risk of thinning of the skin but I don't know what the alternative is.
After months and months of visiting my GP in tears I finally convinced her to refer me to a specialist, I've got an appointment in Feb.
I just feel like giving up and I don't have any friends or relatives who suffer from eczema the same way I do so I'm hoping for a bit of moral support

x

[Marcie Mom]

Hugs! Sorry to hear of the persistent flare-ups you're having

Do hope that the specialist appointment will help your eczema improve in 2014 - allergy testing, killing staph bacteria (chlorhexidine/swimming), exploring topical calcineurin inhibitor creams which are non-steroidal for the face, wet wrap.. not sure if you've already tried all these..

Hugs again, and do wish you can have a blessed 2014,
Mei

[gemmauk123]

Hi there,

Your post really touched me. I am going through a similar stage. I get sore eczema on my face, particularly around my eyes and lips and have not had a flare up for a while. It has been bad for a few weeks now and it has made my self confidence very low. I cant even look at people and would like a rest from this constant pain. I know in the grand scheme of things its not really a huge issue. Thank you for posting your story.

[sarahecg]

Thanks for your lovely replies.
I've actually just been diagnosed with red skin syndrome as well as eczema, and I'm planning on quitting my topical steroids in a last bid to improve my skin. It's going to be a very long very very difficult journey but I'm hoping it will be worth it. I'm also planning on discussing all this with my specialist in Feb as well as making an appointment to see an allergist as I'm fairly sure I have a dairy intolerance.

My skin is in no way any better than when I wrote that first post but my spirits are higher. I'm angry at the medical system that I have been prescribed topical steroids for over 20 years and that these have become part of the problem BUT I'm feeling optimistic about the future through my cynicism.

@gemmauk123 I'm so sorry to hear you're suffering, eczema on the face is the worst, I've been quite lucky in that my face is really the only area I don't suffer with. I won't bore you with treatments or ideas because I'm sure you've tried them all but if it's only been a couple of weeks hopefully this will all die down again soon. You're right, it's not a huge issue in the grand scheme of things but to an eczema sufferer it's everything, especially when you're covered head to toe and in constant pain. As for the self-confidence, I am slowly learning to just hold my head up high and be strong enough to face the world when I'm having a flare up, I really hope you can do the same.

If you have a chance, please take a look at my blog, the thick skin, http://thethickskin.blogspot.com, it's fairly new so there isn't much on there but I would love it if you could follow my progress as I go through topical steroid withdrawal, I really feel like I need all the support I can get and I know how well fellow eczema sufferers support eachother.
good luck and keep your head up x

[Marcie Mom]

Thanks for your update - I didn't know that you can be diagnosed with red skin syndrome.. technically, that's not related to eczema? Do share more on this, interested!

Take care,
Mei

[sarahecg]

Hi!
Sorry about the slow reply

Red Skin Syndrome is actually another name for Topical Steroid Addiction. Ive used potent topical steroids all my life and what i thought was persistant eczema was in fact my body reacting to these steroids. When I stopped taking them, my skin flared up beyond belief, I've actually just got out of hospital and am now taking an immunosuppressant drug called ciclosporin to help with the flare. Its hard to go into full detail here but everything you need to know is on the super helpful ITSAN (http://www.itsan.org/) website and I've also talked a little about my experience on my own blog http://thethickskin.blogspot.com.
Theres links to other blogs as well, people who have been in steroid withdrawal for a long time now and you can have a look at their before and after pics

I'm sure Red skin syndrome is not what's effecting most people on this forum but awareness of it is really minimal so spreading the word is important

Sarah x

[Marcie Mom]

I know itsan is influencing many eczema sufferers, but it doesn't seem to be adopted by the dermatological society and there are many groups formed to pressure people to stop steroids. I do not recommend this because each skin is different, and a flare-up of what kind is not discern-able by the patient himself/herself, and your skin may not even be suffering from the same thing the website is referring to. Blanket recommending stopping steroid as the solution just doesn't sit right with me, and worse, many for-profit groups jumped on this and recommend their alternative $ solution.

For children who scratch, leaving the eczema untreated and risking infection is dangerous. For those who are trying on this path, do watch out for symptoms of infection - blisters, fever, worsening eczema, warm to touch skin. Infection spread easily for kids, don't risk it.