Skin condition and mental health

[BeRightBack86]

I’m currently suffering with a terrible skin condition, it means I can’t do anything I used to do. I can’t even shower properly or swim. I can’t exercise or stretch and move in certain ways. I can’t drink due to medication and I find socialising really difficult as I’ve lost my confidence. I’ve gone from being a fun, sociable, energetic young woman to nothing. I’ve got no friends as I’ve been unable to do anything for months and my boyfriend is hanging on by a thread. I used to travel and now I can’t go on a plane. It’s all come on very suddenly and it’s now been about 8 months of living like this. The worst part is no one knows why or what it is, I’m waiting to see a dermatologist.
im really looking for advice or something like that about how to regain some life, how to not let it consume me, and also does anyone have any recommendations of an amazingly helpful dermatologist in the UK or any advice on getting things sped up in the NHS. I’m ok today but I’ve genuinely been struggling with mental health to the extreme and I’m worried about myself. I’m also a single mum to 3. They’re ok and i shield them from most but obviously it is impacting them.

This sounds really horrible for you, I'm sorry you are struggling. Do you know if the condition is related to any allergies? Food or otherwise?
if you are in the UK wheteabouts are you?
Could you pay for a private referral somewhere?

Thanks for your reply. It’s not food or anything like that. I don’t know anyone else with this and haven’t found anyone on the internet either! No one knows why it’s happening.
i did look at private but I really can’t afford it and also most couldn’t see me until new year anyway! It’s really sad, scary and depressing.

That sounds awful. The doctors must have some idea surely? Could it be related to the water or something in it where you live? Or some sort of pollution? I think if there's a way to get seen privately then you definitely should; could a family member help you out with a small loan or anything? If you work do you get health insurance or anything similar?

If your GP has referred you to dermatology and you are waiting for an appointment ask the GP to send their bookings team an expedite request to bring your appointment forward. Outline to them everything you have said in your OP.

Just wanted to add I work in dermatology and received an email from a patient very similar to yourself and one of my consultant colleagues kindly overbooked their clinic to fit her in sooner. So it is worth asking your GP or contacting the dermatology dept yourself. Your GP should also have at least prescribed some topical treatments ie. Creams etc to help with the symptoms. If it’s itchy antihistamines can also help. I hope you get seen soon!

When we had a similar issue with my child, we were told to send pictures to the Dermatology department.

We had been to and fro to the GPs for months and they were trying their best but it was getting worse and worse. They had asked for advice and referred but we were still waiting.

Once we sent pics to Dermatology, we got a rapid response from them - because the pictures (multiple showing the severity and extent of the issue) told the story.

It still took a long time, several different Dermatologists and having to try out quite a lot of different things before we saw progress - and it wasn't that fast, but it was at least progress.

Our best result was with a private dermatologist, probably due to the fact we were given more than 10 minutes with them.

I’m so sorry. I’m not much help on the diagnostic front as my skin conditions (psoriasis and granuloma annulare) are easily diagnosed but I do know how awful it is when they flare. I had a psoriasis flare which covered 90% of my body and I could barely move because of the pain. You have my deepest sympathies and I really hope you can get some answers soon. I barely left the house for months and my world became so small. Wishing you all the very best.

In terms of the impact on mental health, it's really tough. It was certainly a more severe impact than even the physical aspect of it for my child; we really struggled to keep them doing normal things and had to be quite callous at times because they had to keep some sort of normality. I think they hated me at the time and I don't blame them but I couldn't let them just hide in a bed.

Have you got one person who you can confide in, who can listen to you? I think you need this to offload how difficult it can be and be able to express how you might feel. If you don't have someone national helplines like Samaritans or Shout or anything local might help.

What kind of condition, is it hives? I have exercise and heat induced urticaria

I understand completely. Just over 10 years ago my life changed dramatically. I was suddenly covered in a head to toe rash that made me want to flay my own skin off. It took months to figure things out. At one point I made myself a promise that I would stick around until my daughter finished university. That would be enough time for the doctors to make the pain go away.

My daughter still hasn’t started university. I’m not cured because there is no cure for me, but I’m better. I have to take massive amounts of medication and avoid my triggers so my life has changed, but I’m ok.

Once you get to a dermatologist, the process won’t happen immediately. There is often some trial and error. I even got referred to a different dermatologist at one point, but they figured it out.

the new biologics were just coming out when I got sick. they weren’t available at first. I was one of the earliest prescriptions. They are amazing so if that is what they ultimately suggest, do not hesitate.