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AIBU?

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Original poster

Fuck psoriasis and eczema!

90 replies

Wintermarshmallow · 30/11/2022 02:05

honestly, I’m fed up of it. Seriously- fuck psoriasis.

my scalp is covered in scales, plaques and thick chunks of skin. I can’t have my hair up because it’s so obvious. I’ve actually just woken up because I must have rolled on my pillow and my skin has all cracked open and my pillow is covered in blood now. A massive crust (easily 1 inch by 2 inches) has just come off my head and I actually feel like I’m shedding a whole new scalp.

im so fed up of it all. It’s embarrassing, painful, and an absolute dick to live with. I’ve grouped it with eczema in my title as that sounds horrendous to deal with aswell.

i’ve had almost every form of steroid available for it and no real improvement. I’ve tried every shampoo and am fed up with people in real life trying to be helpful by suggesting t gel, or asking if I’ve ever heard of a coal tar shampoo- no, that one must have passed me and my dermatologist by🙄 I know I sound grumpy and people are only trying to help and don’t mean to be patronising, but it’s so frustrating having people comment on it at all never mind suggesting things as if it will fix it straight away. It’s also really frustrating hearing people casually describe little bits of dry skin as eczema or psoriasis, i know in some people it can be mild dry skin but generally it’s not and I feel like some people don’t understand just how awful it can be 😢

arghh, I’m just so fed up of it all! Just needed a good rant and to get this all off my chest.

anyone else fed up with their shitty skin?!

OP posts:
Yabado · 30/11/2022 13:35

Also my sister suffers from it mainly on her arms & legs and she uses a sunbed once a week religiously for about 8 years and since she has been doing that she no longer suffers with it . She also take regular cheap holidays abroad in sunny places and when the sun is out she takes advantage of it

I know sunbeds are frowned upon but it’s the only thing that worked for her

BeyondTheLetterOfTheLawTheLetter · 30/11/2022 13:44

I was looking to buy one of the old over-bed sunbeds for it (like everyone had in the 80's) but they're impossible to find any more. 😕

Legallypinkish · 30/11/2022 13:47

Look at The Dr Aron regime. They have a Facebook page. You can see the before and after photos.

Lolly49 · 30/11/2022 14:22

My daughter has had psoriasis since she was 6 now 25 the only thing that helped was light therapy.That didn’t clear her scalp though we went high dose vitamin D and neem oil,shampoo and conditioner.
She still suffers from it but not as badly as when she was young.

Iwillorderthefood · 30/11/2022 14:38

Totally agree with you, I have scalp and nail psoriasis coupled with eczema, years of messing about excluding various foods, My mum was asked if she was ashamed of how I look when I was a child and she was continually taking me to the dr to try and get it sorted out, he asked in front of me and my quiet, mild mannered mum was very angry and told him he was wrong. She asked for a dermatologist referral, and was refused, and for patch testing with was also refused. I finally got a derm referral when I was 47 years old, patch tested and finally I can avoid the substances that make my skin flare, though I’ll never be clear entirely due to atopic eczema. The psychological impact is huge, especially when your skin is on show all the time, from kids not wanting to play with you when you are little, to the looks you get as you get older, along of course with never feeling comfortable in your own skin. Hope you find ways to cope.

Thefajita · 30/11/2022 14:47

I feel your pain OP. I’ve recently turned a corner after dealing with topical steroid withdrawal and can honestly say it’s been horrific, it’s dominated what I wear, activities I do, caused a lot of extra laundry and cleaning up of skin flakes. At times it’s left me unable to sleep and the effect on my mental health has been significant. People asking if I’ve tried dove body wash, lush dream creat etc. definitely doesn’t help. The thing I found hardest though was other women discussing their skincare routines and worries about wrinkles while I had severe elephant skin and looked about 80.
To all of the posters making suggestions to the OP, I can only imagine you haven’t been where she has. I’m pretty sure she will have tried all of these things and a lot more.

Splodgerbodgerbadger · 30/11/2022 17:41

I really feel for anyone with psoriasis, eczema or other skin conditions, it must be awful especially all over your body. I have a skin condition that mostly effects the palms of my hands and fingers and the discomfort of that alone drives me potty, I can’t imagine having it body wide. And yes the people with ‘helpful’ suggestions. I’m on a 4th different tablet from the hospital now trying to find one that works, that E45 you suggested bog off’.

OriginalUsername2 · 30/11/2022 18:04

What is your diet like?

I used to be covered in psoriasis. I spent 10 years experimenting with my diet. I just have some on my elbows and knees in the winter now because I’m still eating some trigger foods.

Tomatoes are my biggest triggers. Winter would set in and I’d be eating stews, soups, pastas, bolognaise, braised.. all full of cooked tomatoes. My arms and legs would get so sore they would bleed. I don’t eat any of these now.

Spices are a big one. And pork! My worse psoriasis happened to the point of crying daily when I was eating homemade Chinese food for months on end.

If your skin is hurting and your diet has just got “wintery” you might find the same.

NeverDropYourMooncup · 30/11/2022 18:06

RLScott · 30/11/2022 02:46

Your gut lining (circa 80% of your immune system) is compromised. Gut dysbiosis (bad bacteria exceeds good). The result is you then get the overworked immune response.

Three steps:

1.Cut out all sugar (even fruits, starchy vegetables)
2.Probiotic (Kefir is a good one), that’s your good bacteria
3.Prebiotic (Inulin, of which Asparagus (raw, and put in a blender) is a good source), this feeds your good bacteria (imagine the probiotic is the seeds, well the prebiotic is the fertile ground..probiotic on its own achieves nothing without prebiotic).

Foods to eat...chicken, eggs, green veg. Small glass (150 to 200 ml) of kefir x 2 per day (morning and night). 2 large glasses (350 ml) of raw blended asparagus (or any inulin rich food) x 2 per day (take it first thing in the morning, 2 hrs before kefir, and then in the evening, again 2 hrs before kefir). Your main meal in the middle of the day.

With all this, exercise. Absolutely vital. Think of the above diet as washing powder, well it won’t work without the machine spinning. Your body can’t be sedentary and recover. You have to move. Optimise digestion. So stretching routine; especially important to twist your torso (it’s your colon you are basically targeting here, you want that moving without food just languishing in your gut). Do the usual stretches five times each (takes about a minute) and then after that do pretend skipping for a minute. So that’s 2 minutes, do that five times per day. You will then need to do two 15 minute exercises outside to get fresh oxygen running through your body. Ideally on a bike as there’s no joint pain (which can be an issue with psoriatic arthritis). If you can manage a brisk walk, then great. But key is not to overdo it. Exercise should be relaxed. Stress exacerbates psoriasis, so it should be minimised. Increasing your fitness allows for greater stress endurance (in other words, being physically stronger lessens the impact of stress).

And be sure to keep in contact with your GP through this.

Oh, here we go, another one.

As a fully paid up scratching and limping member of the Psoriasis and Psoriatic Arthritis community who has had a gut (leaky or not) full of woo-woo and magical thinking and advice that my batshit overactive immune system is underactive and I can fix everything by (insert random food group consumption or non consumption), a bit of exercise (6 days a week for over an hour not enough for you?) and some good old fashioned magical thinking, I'd like to take this moment to say something to you -

ODFOD.

Cryalot2 · 30/11/2022 18:07

Hugs it is a curse.

I have it about 45 years I for good measure developed a second type a few years ago and currently have it in eyes, up nose, dreadfully in ears as well as body and scalp not forgetting my genital area. And have the arthritis.
Light therapy or sun helps me best.I Enstilar is about the only thing that helps now, but it so greasy and stings.
My biggest regret is spending silly money over the years on so called cures. When I have said that they didn't work am told it's my fault for not believing in it or not doing something right.

Everyone will have something that works for them. Pregnancy was great 😆

All I can say there will be flare ups and other times its not too bad.
Never be ashamed of it or try to hide.
At times it looks as though I had broke a multi pack of crisps and the bits were falling round me. As for the bed those who have it know what it's like

nokidshere · 30/11/2022 18:12

Hugs. It's horrid. I've had psoriasis since I was 6 months old and I'm now 61. It's never been clear (except for 6 months when I was pregnant at 39), until now. I'm on methotrexate and biologics and it clears my skin as well as treating my RA, PA, AS & Arthritis.

Keep going back to the dermatologist until you find the right thing that works for you.

sadie42 · 30/11/2022 18:21

Does anyone else find that sun makes their psoriasis worse? Mine was at its worst when I lived in a hot country. And light therapy made it flare to the extent that it bled. The only thing that calms it for me is cold seawater, and dermatologists keep telling me that its sun, not sea, that's helping, even when I tell them the sea is cold and there's no's sun.

BeyondTheLetterOfTheLawTheLetter · 01/12/2022 20:58

Anyone else getting E45 adverts along the side of the thread...? 🤔

ItsMeHiImTheProblem · 01/12/2022 21:32

sadie42 · 30/11/2022 18:21

Does anyone else find that sun makes their psoriasis worse? Mine was at its worst when I lived in a hot country. And light therapy made it flare to the extent that it bled. The only thing that calms it for me is cold seawater, and dermatologists keep telling me that its sun, not sea, that's helping, even when I tell them the sea is cold and there's no's sun.

I had this problem too. UV treatment just made my psoriasis worse.

MoonahSton · 01/12/2022 21:41

Agree. Fuck psoriasis. I've had it since my early 20s (I'm in my 40s now) and the only thing that's sorted it was being put on the biologic Cimzia. But I'm given that to treat the psoriatic arthritis not the psoriasis, it's just a happy side effect. Still have daily joint pain though

MoonahSton · 01/12/2022 21:44

I've found that gluten causes my arthritis to flare more but that's just me, other people I know which psoriasis are fine with gluten. It's not a cure but it's worth keeping a food diary and note how good/bad your psoriasis gets, just to see if you can identify a pattern.

Justtheonethanks9099 · 01/12/2022 22:05

Olive99 · 30/11/2022 12:32

Dead sea salt helps soothe my itching.

While in Jordan I decided to immerse myself in the Dead Sea for about 45mins.
Went into remission for about a year. Amazing!

I have Betnelan for my scalp but can't stop picking.

Sympathy OP, it is a horrible condition.

Summersdreaming · 02/12/2022 07:12

One thing I've found to help hide the patches on my face is Elizabeth Arden 8 hour cream. It's more like vaseline in texture. I put it on the patches after moisturiser and before foundation which really helps stop the makeup sinking into the dry skin and looking flaky.

fortheloveofcheesecake · 02/12/2022 07:28

I've got a flare up at the moment....feels like my skin is itching under the surface. My DH tells me not to scratch....I tell him it's almost impossible not to. I'm just stressed at the moment and that's the cause. During the summer I'm not so bad. I throw myself in the sea most days as we don't have a bath to do the salt soaks. In the winter it's more tricky with polluted water and bad weather, but when I can get in it really does help.

RumblePhish · 02/12/2022 07:31

Thanks @RLScott, I keep meaning to do something like this and now DD has psoriasis so it’s extra incentive. I know there’s increasing information on links between the immune system and gut health but other that cutting out grains I don’t really know where to start.

ConnieSaks · 02/12/2022 21:43

I had psoriasis badly in my 20s but fortunately pregnancy worked! I was also lucky that when it returned it was only on my arms and ears and not my face! Diet helped too. However I can tell you as a side affect of recent chemotherapy I no longer have any psoriasis - this is a bit drastic and I don’t recommend!

@RLScott thanks for your post as my DS has very bad eczema (really wish I could take it off him!) and he is motivated to follow - fingers crossed (even after just 2 days there is a slight improvement).

KeeefBurtain · 02/12/2022 21:56

I’ve only had psoriasis for 2 years but my legs and feet are smothered in huge plaques. I’ve recently finished an 8 week course of dovobet which helped clear the plaques (not the red patches) but as soon as I stopped using it, they came back with a vengeance. GP reluctant to prescribe more steroids so I’m stuck with relentless itching and it’s so painful to walk.

ChangedmynameagainforChristmas · 02/12/2022 21:57

I have had it all my adult life. It has been in my scalp and even inside my ears. The worst was when it was where my ears join my head. You could have slotted a coin in the scab both ears. My head hurt so bad it was awful.

I have been covered from head to foot. No summer dresses or little tops for me.

I had phototherapy which helped enormously. I think I have had that three times and since then I only have it on my elbows, base of spine and under the breasts.
When it flares up I use Betnovate sparingly and Betnovate scalp appplication on the head. Currently none on my scalp at all and for that I am eternally grateful

TheOtherHotstepper · 02/12/2022 22:16

I developed psoriasis after a strep infection in my thirties. I had it on my scalp, in my ears, on my arms and legs, my genitals and the soles of my feet. Nothing the GP could offer made any difference at all.

It turned out that I had actually had an underactive thyroid since my teens, following pituitary damage as a result of glandular fever. As soon as I started taking thyroxine, the psoriasis disappeared very quickly and has not returned.

I can't explain it, but if it helps anyone else ...

kkneat · 02/12/2022 22:33

My DD has tried lots of different creams etc over the years and found that this oil had helped her her scalp psoriasis a lot
H-Psoriasis Formula