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😥

It sounds and looks like cellulitis.

I hope it's not, but get checked for sezary syndrome. Someone close to me thought she had psoriasis for years and it turned out to be that.

I would explore chinese medicine, acupuncture, naturopathy & alternative medicine at this stage.
Sending my sympathy 💐

This might sound absolutely crazy, but doing a breastmilk bath for your hair/head might bring some light relief. It helps with skin conditions due to its natural antibiotic & gentle nature.

Im really sorry you’re going through this, so difficult & life impacting.

Link to show I’m not totally crazy

Hi OP, I haven't read all of the posts but ask if you can be referred for allergy tests. My sister has suffered with skin issues like this for a good few years and after recent tests it turns out she was allergic to one of the ingredients in the creams / shampoos she was being prescribed so it was making it worse.
Also ask to have some blood tests so they can see if there's anything unusual going on with your immune system - there might not be but it's a good place to start.

Could you start a go fund me and post on here for help? I’d chip in so you could go private and im not make of money, but I tenner I would donate, so you could at least see someone expert asap. Start a thread asking? Xx bless you

Have you tried any products by Hanna Sillitoe? She was on dragons den with her skin healing range which includes scalp oil. She had very bad psoriasis herself. Might be worth a try. Have a look at the reviews on her site, many people have posted pictures and the products seem to help. I have the scalp oil myself to help my itchy, dry scalp and it has helped me. I think her main product is a probiotic type drink. I do hope you find a solution, it looks so sore.

That looks so sore, OP.

I can’t offer advice but just wanted to offer my support, I really hope you get some useful information from others on here.

💐

I'm sorry that you are experiencing this, it must be truly awful. A close relative of mine had issues with her scalp for over a year; it would open and weep, causing significant pain and distress. She saw specialists who tried treatments, special shampoos etc which did nothing. Eventually an allergy test was done which suggested she had become allergic to a key chemical which is in most shampoos, even a lot of the sensitive/medicated ones. In her case, when she started using a natural shampoo without it, it cleared up almost instantly. I would need to ask her the name of the chemical because I'm not sure what it is but would be happy to do so if it is something you wanted to explore. I really hope you get a solution to this soon

That looks painful!

could it be something to do with your pillows? Dust mites maybe or bed bugs? If not then has to be something to do with shampoo or conditioner. Have you tried washing your hair every day too, or not washing it for a few weeks? It’s strange it’s not itchy.

I had some random most horrendous bizarre skin thing that appeared last year, not on scalp, no history of skin issues.

I paid to see a dermatologist who wrongly diagnosed me with a type of psoriasis (looked nothing like what she said) lost count at the amount of creams and ointments I tried, two lots of antibiotics did nowt.

Finally a new Gp said he wanted to try antivirals - Aciclovir, 800mgs 5 x a day - by day 4 it started to recede. This was something I’d been battling with, at this point, for six months.

It literally disappeared within six weeks of taking those antivirals.

Just a thought if you haven’t been offered these.

Wishing you all the best for your solution OP.

I've suffered like this and nothing gp gave me helped. What has helped are Lush scalp balm and the corresponding shampoo bar and a scalp shampoo and balm from boots (in light green bottle) I have to alternate as if use same products all the time it comes back. I also find periods of stress trigger it so try to keep calm.

You don’t need a dermatologist, you need Trichologist.
Im under the care of Eve Proudman at the moment for my hair/scalp problem.

Ouch. I’d pay to see a private dr if I were you, it’s not going away without radical action (unless it dies just recede as things do - but who knows when?)

Honestly I'd see a holistic Dr, have blood test done. Could be missing vitamins. My colleague's cured hers by using a sun bed. The uv rays did something! It was reccomended by her consultant, as a last attempt as nothing else worked.

My husband has scalp psoriasis that crusts, then weeps and then bleeds and goes red very similar to yours. It looked horrific. I bought a dermalux MD for myself and encouraged him to use it. Its a medical grade light device with blue light, red light and infrared light. It also speeds up the healing of burns and muscle tissue injuries. Within two days of use his scalp had completely cleared. He now uses it 2-3 times a week for 30 mins for maintenance and its never come back. Google dermalux and psoriasis before and after. This was after months and months of applying creams prescribed by the doctor with no improvement. whatsoever Now, I do warn you that to buy one is very expensive but you can pay for individual sessions at beauty salons etc to see if it helps. Current body website sells them for home use.

OP that looks agonising . I know you’ve had a dermatologists diagnosis but as you’ve had other HCPs say it doesn’t look like psoriasis, I think I’d be asking for another opinion. Is there any way at all you could go private? I had a urological problem that was ruining my life and had seen a consultant at my local hospital. He misdiagnosed me and it wasn’t until I saw a national expert that I got the right diagnosis and appropriate treatment which completely changed my life. I went without all extras for ages after to pay for it but every sacrifice was worth it. I really hope you get the help you need.

I think it would be a good idea to see a different dermatologist. I had a skin problem once which one specialist misdiagnosed but another got spot on. No one’s perfect and doctors can make mistakes.

OK so this may sound stupid but have u used hibiscrub? Usually can get it from boots or online. Dilute it I think 1/5 ratio and wash every day. Also cut hair.

Has your dermatologist done a skin biopsy?

OP I wouldn't rush out and try lots of different products on your scalp at the moment in case it becomes aggravated further. Can you go back to the GP asap and ask for blood tests because any underlying vitamin deficiencies, etc, might be making it all worse.

Sorry OP I missed your post when you said you had already had blood tests. I have psoriasis and find that fish oils, Vit D, collagen, and iron help. Do you have a private trichologist practising in your area?

I feel for you. I’ve had the same issue as a teenager. Raw, wet patches, weeping a clear fluid. Mine was along my centre parting mostly. (I remember being shamed by a hairdresser for it once).The patches have gone now but for the last 20 years I’ve had thick crusty build up of scalp which, as the scabs fall off take all the hair off underneath too. I’ve spent thousands and tried loads of creams/ lotions/ shampoos. Nothing has stopped it. I do have digestive issues too which I’ve always felt must be connected but the doctors always treat it as 2 separate issues. I’ve no answers for you. I’m sorry but I have some small idea of what your going through. Sending hugs.

By all means see a trichologist but not instead of a dermatologist. That would be utterly ridiculous.