Guest post: "Psoriasis is a living nightmare - but I'm finally confident in my skin"

[MumsnetGuestPosts]

At the age of 13, I developed what initially looked like a bad heat rash. It quickly spread from head to toe and came up as large, red, painful plaques – soon after, I was diagnosed with psoriasis. I have now lived with the condition for over 20 years; the experience has been a living nightmare.

Psoriasis has affected my career, relationships, hobbies, diet and lifestyle. While it hasn't stopped me enjoying my life, I live every day with the knowledge that I'll never be free from it. I've had to accept that it's part of who I am. It is now mostly under control, but I know that it could flare up at any moment, as soon as my current treatment stops working.

Psoriasis isn't just a skin condition; it is actually a disease of the auto-immune system. People often just see the external symptoms, like plaques, and don't realise it can cause other conditions as well. I had just about started living with psoriasis in a more confident way when I was diagnosed with psoriatic arthritis, a type of arthritis associated with psoriasis. Trying to manage both conditions is a struggle.

The psychological impact of living with psoriasis is also hugely underrated. I've been on a long journey coming to terms with living with psoriasis and I now feel confident enough to wear summery clothes and not hide away, but I've not always been like that. I've been in dark places where I'd had enough and felt very depressed, as I didn't have the support I needed. Things got so bad I had suicidal thoughts; I just got to a point where I couldn't cope.

We're all guilty of not discussing the psychological effects of psoriasis enough: sufferers as well as their friends and family. Finding the words to express what I was going through was very hard for me. For many years I'd kept everything to myself, but once I opened up it was like a weight lifted from my shoulders. I was able to have open discussions with family and friends about how I felt and the condition itself. I was surprised by the support I received from everyone. I soon realised they had no idea what I was going through, and were shocked to hear of the severity of the condition. This gave me the motivation I needed to work on raising awareness. Since then I have started a Facebook group and blog. Not only have I been able to help others but this has also helped me. I refuse to suffer in silence any more.

Psoriasis throws up a thousand daily struggles, and these are never more pronounced than in summer. It's my favourite season, but for years it was incredibly difficult to get through. I remember covering up when it was boiling hot, not going on holiday or to the beach. I never learnt to swim; the water was a no-go. The heat would make me feel so uncomfortable – sleepless nights and constant itching were the norm. I remember one night it got so bad, my body felt like it was on fire. I was in tears, covered in psoriasis from head to toe and just couldn't calm it down. Through trial and error I've learnt the trick of putting my pyjamas in the freezer before I put them on – and keeping a spare pair in the freezer in case I need to change in the night.

Unsurprisingly, the phrase "are you summer ready?" means something very different to me. My preparations for summer aren't about bikini shopping or carb-cutting, but about being ready for the sun. The sun causes my psoriasis to flare up, so finding the right protection and using it religiously is incredibly important. Even though I am now confident enough to show my skin, I also make sure I cover up during the hours of strong sun. I wear light, breathable clothing, moisturise two or three times daily (annoying as this is) and make sure I drink plenty of water. So I suppose, yes – I am summer ready.

I now live confidently with psoriasis, but it's been a long journey to get here, and it's made me extremely passionate about people living with psoriasis getting the support that they need.

Anyone living with psoriasis and in need of support should talk to their GP and get referred to a dermatologist - regular treatment reviews are important. QualityCare or the MyPso App are great sources of information, advice and community spirit. You can also find some 'Top Tips' to living well with psoriasis this summer on the QualityCare site that I helped put together along with other psoriasis experts.

[LineRunner]

I do get what you are saying - and I agree that the psychological effects of psoriasis are poorly articulated, especially by GPs and dermatology consultants.

I also think that, given as you rightly say psoriasis is an immune system disorder, that the lack of referrals to medics other than dermatologists is pretty poor. For example, I have at least three other health conditions that could be linked to the immune system disorder, but no-one at the dermatology centre I attend is interested.

However, I loathe the term 'sufferer'. It 'others' me.

[franmacilvey2165]

Hi, I'm really interested in the subject of psoriasis, as I find that when I eat certain food groups - especially since the menopause - I flare up. Cheese, milk, tomatoes, potatoes and a few others are prime suspects. I always wear cotton clothing and avoid any synthetics next to my skin.

XXX :D

[AnonymousBird]

I am so interested to read your post and sympathise 100% with everything you say. I don't have time to reply in detail now, but am marking my place to come back and take part in this thread. I spent 9 months of last year dealing with a massive bout of psoriasis. I live in dread of a flare up every single day as I have suffered these since the age of 6 or 7 until now, aged 45. If I even get a whiff of the fact that someone I know or one of my kids' friends has tonsillitis I go into lock down as that is my worst trigger of all. I carry penicillin everywhere I go in case I get that all too familiar sensation in my throat as I know what it means - months of utter misery of I can't stop the infection in its tracks.

Thank you for so eloquently sharing your feelings on this and starting this thread. I will come back with more lucid thoughts when I am not typing on a tiny screen on a weak wifi signal.

[BeyondTheWall]

Brilliant post. I have had psoriasis since a teen and psa came on after my second child was born. The resultant loss of mobility led to the discovery and then progress of my ehlers danlos. Basically one thing broke, then another, then another. Meh.

My skin luckily flares in the winter when it cant be seen, though i have lost enough hair from it on my scalp to require headscarves and wigs before.

I've tried lots of meds, nothing has helped yet.

[Teaandsympathy33]

I have psoriasis and recently had a course of uv treatment via a consultant. The results are fantastic and have made a huge difference to my self esteem. It surprises me everytime I look in the mirror and see clear skin, without the need for make up. I know there are risks however these are minimal if I take care in the sun. I didn't realise that this was an option for me until I saw a different gp for an unrelated issue. I thought it was something I would just have to put up with, but the gp made a consultant referral, saying that as a young woman I should be able to wear a bikini etc. I feel very grateful to her, and that she saw the whole picture.

[scrimmers]

Initial Psoriasis diagnosis to arthritis in 3 years...Never seen a dermatologist, never seen a rheumatologist (although I was given an appt in June for Sept). Plaques on head, legs, hands, elbows, knees and all around my nether regions. Also diagnosed CFS in the past week. Have spent the past x2 years sleeping all the time, up to 20 hours a day. Lost my job, and now on benefits. Not a very happy bunny. :(

[scrimmers]

And yes, I have the problem of an unseen illness....I was hospitalised with Stevens - Johnson Syndrome for an entire year some time ago, which I believe may have been some form of precursor....And, yes I'm a bit backward in coming forward with the GP even though I'm a Reg Nurse...Nurses DO make the worst patient ;)

[Meow75]

More psoriasis here. Had plaques on elbows, scalp mainly since puberty but this year things have taken a turn as I have developed guttate psoriasis on my torso, front and back, and recently had an x-ray on my left hip which was the most painful experience of my life so far (I'm 40 in October).
I was given Dovobet 2 weeks ago which does make a difference to the plaques but it's the hip that concerns me the most. Waiting to see a rheumatologist.

[harryhausen]

I'm 43 and have had psoriasis since I was 13 too. It has affected my life to a certain extent as I'm always aware of covering up arms etc. I've been asked if I've been in a fire and have burns etc. However, it's not affected my work or relationships.

I have most of it on my elbows now and currently a very painful patch on my foot.

My main worry is my Dd. She flared up overnight with guttate psoriasis when she was only 6. I knew what it was immediately and told the GP. I was told it would go away, but I knew it wouldn't. After about 6 trips back and forth to the GP I finally got a referral to a dermatology nurse who then referred dd on to a senior dermatologist at the hospital.

It took nearly 9 months to get to this point. Dd was in agony and by now virtually 85% covered. We were given UV light treatment 3 times a week for 3 months. It completely cleared.

She's now 10, and still suffers but no-where near as bad as when she was 6. Her scalp is the worst and we really struggle with that. The psoriasis still presents as small red plaques. We use Dovabet gel on each spot for a few days until it disappears. Then a new spot appears somewhere else.

We don't use soap, and Dd uses emollient to wash with.

I wish she was as carefree as her friends are with their skin. However, I'm hoping she'll continue on confidently.

If I could ease the pain/soreness/itchyness of her scalp I would be ecstatic. Gp has said there's nothing they can do. We tried everything.

I do feel many GP's don't understand the pain.

[myrtleWilson]

I've had psoriasis for years too,it ebbs and flows with me but I did find the uv course of treatment at hospital really effective. Has anyone found coconut oil any use?

[AcademicOwl]

Thank you for posting this... My mother has suffered with psoriasis since she was a child and now has severe psoriatic arthritis. It's amazing the prejudice that other people feel happy to express about a skin condition which they clearly don't understand :( people can be amazingly unkind.

Fortunately, so far I've not had any symptoms, but I know that my DM worries that my children could have... They are still very little, so fingers crossed they won't.

My DM is beautiful to me; no matter what her skin is like :)

[redtop1]

I've had psoriasis since childhood. At school other children did pick up on it and ask what it was. I used to say it was a bit like eczema which seemed to satisfy a lot of children's curiosity and certainly it lost its intrigue as eczema was pretty common.

[Meow75]

Yes, red top, I've always compared it with eczema too. Far easier than a full explanation!!

[trulyenoughnow]

Thanks for raising this issue. I'd like to use this space to add what worked for me. If it helps anyone a tiny bit it'll be worth it. I lived with psoriasis since I was four years old, and it has caused me such lows. I've had so many treatments, and now, at 34 I've been practically spot free for ten years. (Occasional flares with strep throat/tonsilitis but they are minimal) Here's what helped me, though it may not help you at all.....

• going totally gluten free and low carb.
  
• no metal, or metallic finishes worn near the skin, even a button, lurex, bra hook etc, or metallic make up.
  

-eat daily greens. Spinach, kale, celery. Every day.

• avoid alcohol and caffeine
  
• use sudocrem as daily body moisturiser
  
• take 'coral calcium' supplements
  
• declutter your environment
  

- do the thing that gives you the most peace

• avoid citrus and yeast forming foods
  
• go easy on foods that are hard to digest/ fatty/particularly pork products and cheese
  

-take the best probiotics you can afford
-pay attention to posture and comfort. Yoga/ osteopathy/ comfortable shoes.
Every day, I know I have psoriasis. With the unpredictable nature of psoriasis, living to these 'rules' makes me feel I have a tiny amount of control, however misguided that is.

[EddieStobbart]

Hi, this might sound trivial but the biggest thing for me was discovering Exorex. I have patches of thinned skinned from wrongly using strong steroid creams in my late teens which has put me off anything like that but Exorex works very slowly but effective if I make an effort to using it religiously. Even if I don't it will take the edge off the itching and rawness. I feel much more in control now.

I feel very lucky that I don't have arthritis as I think that is much harder to push to one side though I currently have persistent hip pain. I thought was do to running in poorly fitting trainers but this blog has made me wonder.

My scalp has been 50% covered in plaques for about 25 years so tips for that would be useful. T-Gel is the only shampoo that has any noticeable impact and at least doesn't appear to wreck my hair.

[TooMuchJD]

I too suffer from psoriasis, have done since primary but got considerably worse in my 20's. Mainly manifests as stable plaques on my elbows, knees and scalp but have recently had flare ups of guttate too which have appeared on my face, hands and other areas. This has been more distressing than the stable plaques, which I can generally cover up.
I have hip pain which I have always put down to being born with hip dysplasia but now I'm wondering if its connected to my skin instead.

I worry now that one of my children will develop it

[lutrinae]

I've had it since I was 13.
I'm pregnant and breastfeeding (for 2 years) so it's got bad and no idea what I can take for it.
One patch on the back of my hand is v bad due to hand washing - but how to avoid with a toddler and chores to do?
I have to avoid getting hurt as patches spring up on wounds.

[lutrinae]

As a side note I also have a very red face, possibly acne Rosacea, which makes me very self conscious

[BitOutOfPractice]

Thank you for that post.

I agree with everything you say although I only have it to a small extent. The misery of a flare up is terrible.

I find that mine is exacerbated by stress too - anyone else find this?

I also experience what I term Psoriasis Rage. It's the feeling I get when someone says "stop scratching".

[madhairday]

Thank you for this post. My 14 yr old dd has had psoriasis since the age of 8 when it came on very suddenly (plaque) - it's so severe they tried cicolsporin and methotrexate with her but they didn't really work well enough to justify any risks toward such a young girl. So it's a daily battle with creams, we find dovobet works the best though I do worry about the amount we use. She doesn't get better in sun, sadly - UV treatment did nothing for her either.

She does have a really good attitude which helps. She doesn't let it get her down and if people make comments she just explains the condition and ignores any nastiness - kids at school were vile at first but have calmed down now due to her not taking it on board. It is hard for her though, especially as you say in summer.

I hate it, it's so horrible and I do worry about the future. Do a lot of psoriasis sufferers get the psoriatic arthritis? :(

[LineRunner]

Bit Yes, stress is a massive trigger for me.

[thecatsm0ther]

I've had psoriasis for about 40 years now! It's not as bad as some have, but it has definitely affected my confidence over the years and contributed towards depression. People look, stare ... Sun doesn't help my skin either. Steroid creams help temporarily until they cause a flare up after too much use.

[Bettertobehealthy]

I wonder if I might add something, hopefully useful, to this discussion.

I see that many people, not all, but many, are helped by UV treatment. As you know Psoriasis is a cell hyperproliferative problem. UV generates Vitamin D in the body , which has anti-hyperproliferative effects, and thus we believe, helps us by regulating the cells, turning them down if you like.

A recent study (2014) in Finland has shown about a 50% reduction in plaques, by intervention with UVB. over the short term. The interesting thing about this study is that they measured the storage form of Vit d , in the blood 25(OH)D3 , and found it increased significantly even though the participants were already on some Vit d oral supplementation. The participants levels rose to what I would call the ancestral level of vitamin d. That is the level humans would have had , for millions of years, as we evolved in Africa. That level is around 120 to 140 nmol/L. Nowadays, in this country , and indeed most of the western hemisphere, our levels are generally about half that. We avoid sunlight, use sunscreen, in fact at our latitude which is 50+ degrees we cannot make vit d in the skin from sunlight between Nov and March, the sunlight is too weak. Reulting in the lowest levels around end of winter , early spring. I note that you have mentioned that that timeframe can be worse for flare ups? for some people.

In the light of this , I wonder if anyone of you has actually measured your vitamin d level, and determined if low levels correlates to your flares. There is a strong suspicion, in my mind , that if you have "normal" i.e. ancestral levels of vitamin d , you would be helped.
It is relatively easy to raise vit d, by supplementation , and it is easy to get your level measured.

We are discussing this and other vit d topics over on another thread, have a look.
www.mumsnet.com/Talk/general_health/2421492-Vitimin-D-can-it-have-this-effect.

BTBH

[loise33]

The Psoriasis Association (independent charity) is a good place for info - //www.psoriasis-association.org.uk

[Lynnie69]

My 14 year old son has been diagnosed with Psoriasis. It's all over his torso, scalp and now coming up on arms, legs and face. He says it isn't bothering him but he has become a bit withdrawn and isn't taking care e.g using moisturisers. I don't want to nag and keep reminding him but need him to put creams on. Any advice?