to feel like this is ruining my life.

[wetskin]

I have posted about this a few times on here before name changing- I last posted a few months ago (I think? I can't remember exactly!). I just wanted to start a new thread as its changed since then.

unfortunately its gotten much, much worse and im losing the will to live now. I feel so depressed and miserable and I hate my life so fucking much now. Its embarrassing, painful and im actually frightened that nothing seems to be helping it.

I have a skin problem on my scalp which causes patches of my skin to become red, open and wet. its as if the skin as been completely abraded off it, like in a skinned knee etc. Im not scratching it either - I have no nails as im a biter and I wear gloves anyway in case I was rubbing it during the night but im not.

It started out of the blue 3 ish years ago (I had no skin problems before) and then got really bad and was in my ears, face etc. Because the skin was permanently open wounds, it also got infected constantly. I've had around 8 different antibiotic prescriptions for it in total. I've also had different anti fungal treatments- everything from shampoos to solutions to oral tablets. I've had steroids- topical and oral. Some treatments made no difference. Some helped for a short while then it returned.

Its not going away. I've been seen by a dermatologist who diagnosed it as psoriasis. But other healthcare people have told me it looks nothing like that and now I feel so confused. Its not dry or patchy- its like huge big raw weepy patches of skin.

My problem now is that previously it was mainly around the back of my head, which was bad enough but bearable because it wasn't obvious, but its suddenly spread and is across my entire scalp now, including the top and at my hairline. its everywhere and getting worse. I dont really have much skin on my scalp at the moment- its probably 95% open wet wound. it looks as if someone has shaved the majority of my skin off.

I just want to scream, im so fucking fed up with this. I believe the doctor that its psoriasis, but it looks nothing like it and nothing so far is helping it. Its not like silvery plaques like in psoriases on google- its like huge wet open wounds. My entire head is sticky because my scalp is leaking stuff.

im at a loss. my doctor is at a loss. im waiting to see the dermatologist again and Im so frightened. is this going to be my life now? I know it sounds dramatic but its not just the embarrassment side, its excruciating and I can't lie down at night or have anything touching my scalp.

I just wanted to vent, and to post on here one last final time in case anyone is going through similar and has any advice I could try. I know some people have much bigger problems than this but its destroying my life right now😥

Oh sorry posted too fast 😕

did the nutritionist do vitamin check at all, especially D?

Yeah I had a blood fest and everything was fine thankfully. Unfortunately there isn’t any triggers and foods don’t make a difference for it, it just comes and goes as an when it decides but when it starts to spread it spreads a lot and very quickly if that makes sense!

Not at all thanks for the suggestions and advice x

yeah I think so- we did full blood tests for everything they said they could possibly test for to do with this and everything was fine, I don’t know for sure but they said it covered everything x

I know you said you'd tried dietary changes but I had this, was diagnosed with coeliac disease, went gluten free and it cleared right up.

I used to have terrible seborrhoeic dermatitis on my scalp and it was as you describe, open and weepy and wet (sorry). I used to wake up to sticky hair and blood on the pillow, it was utterly horrible. I really really feel for you. For me it seemed to flare up massively with stress and hormonal fluctuations - after years of regular flares, it disappeared after I had kids and then got my first Mirena, after nearly 30 years of weeping scabs, and hasn't come back since. (I still keep bottles of the horrible medicated shampoos Capasal and Nizoral, just in case!)

While I had a flare-up I would spread a towel on the pillow, sometimes sleep in a silk bonnet, and other times would wrap my hair in a bandana or a velour band (the best scarf I had was a tichel from an orthodox shop in north London).

I'd go to another dermatologist and get a second opinion - ask about steroids, uv treatment, anti-fungals, vit D applied to the skin, possible immunotherapy/autoimmune testing, everything. If you can afford a couple of hundred pounds you can see a private consultant in a matter of days, I can recommend this consultant if you need a name and maybe he is vaguely in your neck of the woods: www.circlehealthgroup.co.uk/consultants/roy-palmer

I wish I could give you a hug, I remember weeping in the shower as it was so itchy and painful all at the same time and I just wanted to cut my own head off to get some relief. I really hope it calms down soon for you.

What are you washing your hair with? I get terrible ezcema sometimes on my scalp. I wash my hair with T Gel shampoo. A lot of shampoos are very irritable. This really helps keep it at bay. I would say, stress is a massive factor in my eczema control. Have you considered getting your hair cut so you get more air to it? Your hair looks quite thick which means that the air isn't getting to.it as much as it could if it was shorter.

The thing is even if you tried to remove the major culprits this might be trickster by something different (tomatoes for example)

the only true non allergenic foods are rice and chicken … you could try this for a week as it might give you a clue

id also personally try a very very good quality liposomal vitamin D (we take it every day it does wonders )

Sorry you are still going through this, I think I remember your precious post.
Have you had it biopsied? I would push for that when you can.
Are there any Facebook groups you could join for osoriasis and see if others are similar?

I knew a woman with something similar and in the end the things that helped were medicated shampoos (I want to say fungal but I’m not sure), sunbeds and (sorry) shaving her head. She had a crew cut, almost a buzz cut for a while, I think it allowed the air to get to it and dry it out more.

Really sorry you’re going through this, it looks and sounds so sore.

I'm sorry OP, this looks so distressing for you. I had similar a years ago, went to my GP multiple times and was given prescriptions galore but absolutely nothing helped. I, stupidly, used to scratch and pick at it constantly and lost a shit ton of my hair because of this. I was at my wits end but googled in desperation and ended up on a thread on here where someone recommended Superdrug Trichology shampoo. I used the shampoo, conditioner and scalp tonic and it worked miracles. It's only about 3.99 per product and I've honestly never looked back. I cant guarantee it will solve your issue, but it's worth a go.

This may not help but could it be seborrheic dermatitis? I had it about 25 years ago. It happened at the same time as an eczema flare up (all over my legs, arms and face). In the end I was given this ointment to put on my scalp. I wish I could remember what it was called but it was liquid and smelled like it contained ethanol. In any case, it was only for severe cases and it worked very well.

And the eczema also cleared up after a couple of years; I was extremely stressed and it went away when I felt a bit happier.

Honestly, I’ve done it unfortunately 😢 ive gone back to basics, stripped my diet right back and it had no effect. I’ve had dieticians and nutritionists and we’ve tried everything diet wise. I don’t take vitamin d though so I’ll try that and see if it helps!

No advice just wanted to send a hug (I don't understand the MN thing about hugs but I'm sending you one anyway).

That looks reeeeally difficult to have, and painful 🙁

I really hope you will get seen again soon, get some answers and effective treatment 🌻

@Caplin any particular Dead Sea shampoo you'd recommend?

I have a similar problem. Not this bad yet. Just incessant itching and dandruff and v thick hair driving me insane. OP I have no advice but you have my sympathy.

Sorry trying to reply to posts without accidentally missing any! I’ve not had it biopsied but I had it swabbed for bacteria etc. I tried sunbeds but it didn’t make any difference although I’m not sure if I used them enough- I’m too scared to use them for weeks and weeks because we have a lot of people in the family with skin cancer, including melanoma so I was a bit wary of using it really frequently.

Oh honey I recognise your post as well, I've got no advice just a gentle squeeze and some hope that it'll resolve soon for you.

Oh you poor thing, I remember your last thread. I'm so sorry things are this bad. I'm going to suggest something that might make you recoil in horror but here goes - how would you feel about having a couple of sunbed sessions? Yes, I know they are considered to be the height of evil but the UV might help. Perhaps consider if it might do any good or not.

Bless you … best ever vitamin d for us was “lipolife vitamin d” from Amazon .. really really worth trying!

i used to have odd skin issues so having this specific vitamin D along with turmeric/curcumin and high omega 3 and haven’t had issues for years (turmeric and EPA are highly anti inflammatory to the point of a poster who suggested autoimmune reaction )..

It looks so painful and I'm so sorry. I'd definitely encourage you to take the vitamin D and if possible in liquid form under the tongue as it doesn't rely so much on the gut to distribute. It's a known anti inflammatory so it should help even a little bit. Also have you considered a silk pillowcase? Does it get worse say in the lead up to a period?

Is it worse at different times of the year? Wondering if it's environment?

My mother suffers and for her it seems to be particular pollens, she can almost time when it will be at its worst.

My sympathy - My scalp can be an itchy scabby mess and it's really painful and sore - and yours looks far more painful.

When I was extremely stressed I had psoriasis and it was awful. In most awkward parts of my body, so sorry and itchy and couldn't sleep at night. Open wet sores too. I did change my diet, stopped eating nightshade vegetables and wheat and dairy. Started taking supplements like omega, vitamin D and more.
Don't give up op. There is a solution. Try (although vf difficult) to calm and maybe have a go with meditation or yoga.

I'm so sorry that you are suffering from this.
Would you consider seeing a (highly recommended) Trichologist?
He or she may approach this from a different angle and could possibly make a difference?
I do hope you're better soon.

Hit the sun beds - lie down - every other day for two weeks. How long are you going on them for?

Have you tried coconut oil all over your scalp? It does help me at least in terms of reducing the soreness if it’s bad. Try delicate oat shampoo, I’ve tried all the medicated ones and this is as good but not as horrible to use. Torture the gp and dermatologist. There is a PUVA comb. Your case seems bad enough to warrant it. Has this been mentioned?

Poor you OP, you must be in so much pain and distress. I’ve had psoriasis on my scalp for about 6 months now, just on one side and broken the cycle with the T Gel coal tar shampoo… scalp still a bit dry and my hair is thin on that side, but getting better. Most importantly, the sores have healed and it’s not burning. Have you tried Vaseline on your scalp? This has also helped me, I put it on the most sore bits to act as a barrier, morning and evening. I also had weeping sores, it’s so horrible as the hair gets sticky with it. Hope you have some respite soon.