Feel like a giant walking illness (pic attached)

[sicknoteagain]

Hi.

Desperate times here so I'm posting in the hope that someone has some experience or advice.

I've got PCOS and have had bowel issues throughout the years, sporadic dizziness and palpitations, awful tiredness (Which is getting worse) alongside anxiety and also a chronic skin condition (which I am sure is autoimmune disease).

I was diagnosed with guttate psoriasis 10 years ago. I've always been sceptical as it has never itched and didn't look like any other pictures of it, but went along with what was suggested. The only thing that helped was light treatment, but it always came back straight away after the course had finished.

On the off chance, I saw a dermatologist the other day and off the record he said he's confident it is pitiryasis lichenoid chronica and not actually psoriasis at all. I can't find much on it aside from the same thing spread across multiple websites. He said to go back to GP for another referral.

I've been in and out of the doctors over the years and feel that whatever is causing this skin problem is linked to everything else. I've had massive improvements since cutting dairy and gluten from my diet (pic posted below - photos taken 5 months apart, the first one just before stopping). It has since started returning (I've not been so strict with the diet the last couple of weeks). My youngest son has a 'leaky gut' problem (although I'm led to believe this isn't a real thing? )

I feel like a bloody hypochondriac going to the docs all the time for stuff. It's so embarrassing and my file is HUGE. I've always been 'the ill one', even as a child. I know there is something up though.

Has anyone else got experience of PLC/ any other autoimmune condition which was linked to other issues.

Has anyone got any advice? I feel like this is using all of my strength to keep trying, 10 years is a long time and I've spent so much of my adult life feeling embarrassed, not listened to and ashamed of what I look like.

Thank you for reading and sorry it's so long.

[sicknoteagain]

I'm not tanned in the second pic, it's the lighting in the room being darker.

[DottyDotAgain]

Hi
I haven't got PLC but I do have PCOS and various other autoimmune diseases - Graves disease (thyroid) and Coeliac disease and yes I think they're linked and it's a complete pain having to pitch up at the GPs feeling like a total hypochondriac! I've got osteopenia (precursor to osteoporosis) because of the Coeliac so all in all, I have to have various blood tests/scans and I've had to have 2 x shoulder ops over the years because of crumbly bones - which I'm sure is linked but haven't been told that! I've got a very dodgy hip which I'm about to go to the GP about and I'm only 49 .

So yes, I feel your pain - I am lucky I haven't got anything more serious - they're all completely manageable but just make me feel a bit inadequate, health-wise!

[sicknoteagain]

It's awful, isn't it. I hope they can help you with your hip.

I'm nearly 30. My Nan has celiac and has long said that she thinks I have it too, but I'd stopped eating gluten when I had the blood test (can't face eating it again and making myself ill for 6 weeks). The more gluten I eat the more tired I am. They won't do any other tests here on the NHS and I can't afford private.

I just feel so deflated. It's been such a long time and I'm so upset by it all the time. My partner is amazing and I genuinely don't think he sees my skin conditions most of the time, but it doesn't help me feel any more attractive if that makes sense?

At the moment my flare up is so bad I can't even have a warm bath/shower as it hurts my skin so much. Feels like being stabbed all over with massive needles and it burns.

I never really complain in real life, it's nice to have somewhere to vent. Thank you for replying.

[PowerPantsRule]

Look into mast cell disorder or TMEP if you have any 'allergic' type issues too. This disease has only been recognised recently and it is hard to control and diagnose. Just have a google and see if symptoms fit - often goes alongside hypermobility and auto immune disorders.

[usernomnomnom]

Thanks @PowerPantsRule
I've had a look at both and I think TMEP could also be a possibility.

I'm definitely going to go back to the doctor this week to see if they can refer me.

[catsatonthemat]

Have you been tested for vasculitis?

[usernomnomnom]

I haven't, but am awaiting a dermatology referral. Would they be the ones to test for it?

I'm just at my wits end. It's frustrating not knowing what is causing this and it's really haunted me for the last 10 years.

[Lemons1571]

Have the medics considered the ‘myosotis diseases - polymyosotis or dermatomyosotis? My son had PLC it lasted 10 months before disappearing just as mysteriously as it started. No pain, itching or other symptoms though and tbh it didn’t look like your photos. It was mostly on his torso and had a pattern to it (the plaques all flowed in the same direction).

[onlyoranges]

No idea if it is but I am suggesting erythema multiforme. I have Steven Johnson syndrome and EM is connected with that, there’s also erythema multiforme major. Just a suggestion. Have a look at the symptoms and see if they fit with your. Hope it clears up people underestimate the impact of skin disorders. Skin is our biggest organ and when it goes wrong the impact is profound.