Monday, 22 July 2013

Red Skin Syndrome Journey - 2 months

Currently on a downwards spiral. It just isn't improving at all. The majority of this weekend has been spent soaking in the bath as I just can't stand the itchiness that ensues merely an hour or so after I get out. My glands are more swollen than ever and the full body oozing is constant now. Sometimes I am able to pass out from exhaustion but other times I'm tormented by the itch and the ooze...

Outside I can hear birds chirping, kids playing and music being blasted out whilst people make the most of this rare opportunity of sunshine which doesn't last very long here in the UK. I'm sat with blinds closed to ensure that the neighbours don't get a peak at my raw nakedness. Raw being the operative word really.

This morning I got in touch with my GP who has prescribed me a higher dosage of the antibiotics I've just tapered down on from my hospital stay. Not really happy about this as I'm sure they would be at least working in some way against the spread, but she didn't want to prescribe me any alternatives. Ho hum. We also talked through my medication as there is a lot that seems to be missing from my repeat prescriptions and she wasn't phased at all when I told her I was no longer taking the steroids. Wow. At least they're off the repeat now anyway.

I'll put a cut in for the photographs I just took because they might be a bit embarrassing for people who know me in person. I'm not ashamed of my body though and these are strictly to show people the suffering I am enduring.


Well it's no wonder they call it Red Skin Syndrome!

As you can see I have the not so hilarious red sleeve. The other side of my hand is now completely red and there are signs of it spreading onto my fingers. I must stress - I have NEVER had eczema on my fingers! This is why I believe it can only be red skin syndrome. 

My legs are disgusting. I found a picture I took only a few days ago where the rash had started to rear its ugly head but this is something else. Never have I had it like this on my legs before. It's on the tops of my feet too. 

I can only feel hatred and despair for being told to do this to my body. It's true when they say that doctors only cure the symptoms and not the problem. You only have to read the tube of topical steroid cream to see that they're only supposed to be a short term measure of treatment. I have been suffering now for the past 4 and a half years. Since January 2009 my life had had to be restricted because I became so ill with "severe eczema" when all along I imagine I have probably been enduring constant withdrawals. Now I know what I'm dealing with I have another god knows how many months/ years to wait until this is all over. What a bloody nightmare.

Today marks 2 months off the steroids. Let's hope I get some respite soon.


  1. Oh sweetheart I am so so so sorry, wish I could sugar coat it but you have to hit the very rock bottom before you get better, and this weather can not be helping one bit. Just friended you on f/b as I have some pics I think would be good for you to see, it WILL get better, but just not for a wee while. Hang on in there chick x

  2. Crossing everything that it all gets better for you soon hun :( If it's any consolation, you have a bangin' bod! :)

    1. And you won't believe me when I tell you things like this - see, SEE? :-P xx

  3. awww jenny.
    don't worry stay strong.
    every day is a day closer to healing.

  4. So when you feel like hope is gone
    Look inside you and be strong
    And you'll finally see the truth
    That a hero lies in you

    I always listen to Hero by Mariah Carey when battling this withdrawal. It motivates me. Hope it helps you too.

    I will keep you in prayer.

  5. Stay strong girlie. I know how you feel. That was my skin about 3 months ago. Keep positive :] You got this ! (You really do have a nice figure as well) I may have this happen to me soon enough, I'm starting to taper of topical steroids as well.. I really look to you for hope, you're one of the better role models that I've found when it comes to battling eczema.

  6. You hang in there. I to am a severe chronic eczema sufferer. It is so damn hard and frustrating to deal with on an everyday basis. I have been on 'remission' for over a year now. I don't know what happened to cause my eczema to die down, but I think it was because I made a very concerted effort to not let my condition consume me. A year ago, I moved out of my parents home, to a new city where I knew no one and went to college. I have thrived ever since. I threw away my remaining tubes of Triamcinolone because it is addictive crack cocaine for my skin. I wash my body with dove sensitive bar soap. I seal in the moisture from my shower with either Crisco or some Vaseline. I still have a couple of mild flares but it was nothing like before when I lived at home and had a low quality of life. You are my hero and you WILL make a recovery.

  7. I have been avoiding steroids for quite some time, and although I'm sure you have probably tried almost everything, I thought I would let you know that aveeno eczema therapy does wonders for me. It soothes skin with oatmeal and I have found it to be very helpful to apply the cream every night after a bath or shower no matter if I have a breakout or not.

    1. Hi Laura, thanks for taking the time to leave a comment. Unfortunately I'm allergic to Aveeno! Not sure why but it always causes me to ooze.

  8. You appear to be one on of the only people who's condition appears to be as terrible as my own. Somehow it helps to know that I am not alone. I won't suggest a thing, because as you know, it's just not a simple fix. I do send wishes for ease and clear patches. Thanks for raising awareness. Take care.

  9. Hi Jenny
    I only just found your blog and I think I will add it to my blogroll :) I love the layout and your photos are very high quality.
    LIke some commentors above, providing your photos is a great comfort to those going through the same thing. My back and shoulders look IDENTICAL to yours - I haven't taken photos as I don't have good lighting at my house/decent camera.
    kind of makes me feel normal.... in a screwed up way.

    Best of luck with the next parts of your journey

  10. Dr. Sirisha Singh – Best Dermatologist Cosmetologist Skin Specialist in Delhi provides affordable treatment of all kind of skin problems.

  11. Hi Jenny,
    I am sure you are aware that this is all due to your over active immune response and I know the steroids are just too harsh. There is a lot of work being carried out in finding new products that do not cause such awful side effects and I am sure very soon you will be able to calm your over active immune response without the use of steroids or other products.
    Best wishes and I hope you get better soon.

  12. I have a friend who is suffering and wondering if you did try the L-Lysine back in 2013 that was recommended at high dose of 4,000 mg per day? When I had a mild occurrence of shingles, my protocol for my shingles was:
    Vit D, C, B12, Omega 3 fish oil,
    1,000 mg L-Lysine 3 X per day
    1 TBSP Apple Cider Vinegar in 1/2 cup water 3 times daily,
    1 TBSP Colloidal Silver 4 X per day
    1 TBSP Diatomaceous Earth (DE) in 1 cup water daily for 30 days

    Also took Align Probiotic to help with my gut = immunity response

    Had also used another probiotic with 50 Billion in it in a smallish white bottle with a blue label. And slippery elm barK to help with my IBS, because I think having a weakened gut (being on antibiotics for years with teen and young adult acne) lowered my immune response in my gut which is the body's first line of defense.

    Being I had a mild case, it resolved in about a week. I also used bone broth and tried to follow the FODMAP diet which avoids a lot of foods that are known to trigger allergies, especially gluten and dairy. For me it was the gluten, as I have added some dairy (hard cheese and yogurt) back into my diet. I also got a list of high L-lysine foods during this but of shingles just to see if I was missing out on the best ones. I used DE to dry out the shingle sores so they would scab over. I also did castor oil warm wraps on my abdomen to help with the intestinal stuff.

    Would like to know if any of this might work for eczema?

  13. Hello, first time poster here. I have pretty severe eczema and frequently get weeping on my face, and I agree it totally sucks. My doctor had me try itraconazole (sporanox) and it did very little to help. Last week I started methotrexate with the hopes it can help slow down my immune system. *fingers crossed* I'm on a very low dose of methotrexate, 5mg once a week with folic acid on the other days

  14. I can relate to this article because I would never have thought that I could cure my eczema.
    I tried just about everything I could think of but nothing seemed to work.
    Then I did something different and I got rid of Eczema in 3 days.
    If anyone's interested, here's a website that helped me a lot:

    Best of luck!