Sleep, night-time and psoriasis

Getting enough sleep is an issue for some young people with psoriasis. Sometimes symptoms like itchiness became worse at night which made it difficult to sleep. Zara and Carys sometimes scratch their skin in their sleep, which is painful and causes bleeding. Some people tried various ways to manage the itchiness and sleep better. Lisa says it helps to sleep in a cool room. Louie’s psoriasis flares-up if he overheats so he uses a lower tog duvet. Lucy takes antihistamines at night which were recommended to her by her GP.

Abbie talks about how she manages her itchy skin at night so that she can sleep better.

Age at interview 20

Gender Female

Age at diagnosis 10

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I use like itch relief creams and antihistamines. I took those quite a lot just to prevent it a little bit and just making sure that before bed to have a shower, have a bath just make your skin feel a little bit clear, and just changing the bed constantly as well just so it’s nice and clean, and just not feeling as – , just like clogged up. I like wearing like leggings and like pyjamas that I’d wear to bed I’d wear my leggings types, just cos they felt tighter on my skin, therefore there wasn’t that looseness of like pyjamas just moving around and making it a little bit itchy, so that helped me just feel a little bit comfortable.

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Louis struggled to sleep because of pain and itchiness, which had knock-on effects the next day.

Age at interview 21

Gender Male

Age at diagnosis 18

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I would take quite a lot of painkillers to get to sleep and antihistamines, and things like that, just as much as I could to try and get on top of it before I went to bed. And just before I’d go to bed I’d cover myself in all my different creams, which meant that my sheets were always really horrible, my clothes were always really horrible for quite a long time, just because there so much like steroid cream and emollient, stuff like that, all over the place. And it would-, I’d usually be able to get to sleep alright, if I sort of dosed up on everything I had, and then I’d regularly wake up in the night and have to get up, put some more cream on, take some more painkillers, and then hop back into bed. So it did make-, it did make me quite run down, just because of having to wake up every two or three hours, and actually get up and re-medicate was quite tiring. And because of the itching, I struggled quite a lot with-, with sort of day to day life. So I was in lectures at the time, and I would sort of cover myself with cream, go to lectures, and then if I had sort of like a morning of lectures, I’d go to about sort of mid-morning, and the pain would be-, the pain would obviously start coming back as the effect of the creams and stuff all wore off, and I’d get really, really itchy. And I’d sit there desperately trying not to itch and stuff like that. But regularly I’d have to just leave, leave lectures like halfway through, and then head home and just hop in a cold shower, just because the pain was so bad. So I’d hop in the shower, and then come out, re-coat myself in cream and stuff, and then try and go back and do some more work. But it did make things quite difficult.

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The itchiness of her skin keeps Lola awake at night and she sometimes scratch her skin in her sleep.

Age at interview 17

Gender Female

Age at diagnosis 14

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Sometimes I wouldn’t be able to get to sleep because it was itching so much, or I’d have to like cool my skin down. I’d notice sometimes late at night it would get really really, really itchy and you just can’t get to sleep cos you’re itching constantly. Or I’ve woken up the next day to see blood on my arms where I’ve itched my skin without noticing. it’s kind of frustrating. I guess I would be tired if I haven’t slept and waking up in the night and itching like-, and my head would be on fire sometimes and that would drive me crazy. Or just in the day I just get really kind of worked up because I couldn’t get the itch to go away and it’d drive me round the bend.

And I couldn’t find anything to kind of release that itch which was really annoying. And it kind of becomes so much part of your day is that your-, like everything itches but you can’t itch it because then that makes it worse and you’re just not gonna get better.

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Being tired can be a trigger for flare-ups. Some people found tiredness, stress and psoriasis combined in a ‘vicious cycle’. Russell says his skin shows when he’s exhausted and not looking after himself: it’s ‘a bit of a kick in the backside really to start eating better, to try and have more early nights’. Steven hadn’t noticed any change to his psoriasis if he is not sleeping well.

Not getting enough sleep could impact the next day, making it hard to focus in classes, exams, lectures or at work, and add extra stress in the person’s life. Getting up early to travel to doctor appointments and go for treatments can be tiring. Abbie fitted in phototherapy sessions around work, which she says did ‘exhaust me over time’.

Damini explains how being too tired to revise for her exams led her to feeling stressed. She thinks this affected her psoriasis and felt it was a vicious cycle that you’re trapped in.

Age at interview 21

Gender Female

Age at diagnosis 4

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And the itchiness is quite severe as well.

Could you say a bit more about the itchiness?

Yeah, that, well I do try to control myself. That hard. But yeah, sometimes you just have to scratch it [laughs] yeah. It’s usually at night time, the itchiness just comes back.

Does that effect your sleep and how much sleep you can get?

Yeah. It did to some extent. Some nights were bad and then sometimes it was just completely fine. So it’s just how it feels.

I found it really hard, especially when I was revising towards the end of my exams, I would feel really sleepy during the day and just that would make me panic even more that I’m not revising, which then has an effect on my psoriasis and it’s just a vicious cycle that you’re trapped in.

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Many had a treatment routine which involved applying topical treatments in the evenings and/or for overnight. This could be time-consuming. Steven keeps on dithranol treatments for an hour each evening. Abbie has to get up earlier in the morning to wash off her overnight treatment. Carys works as a hospital nurse and, after working long shifts, says she spent up to an hour putting on emollients which was ‘the last thing on your mind’.

Other downsides of topical treatments were mentioned too, such as being messy, sticky, greasy and stinky. Keeping topical treatments on overnight can be tricky as people said they would often rub off on bedding and pyjamas. Steven found coal-tar lotions stained. This increased laundry, but a few people said that fresh clothes/bedding can be itchier. Some people had solutions for keeping treatments on the skin of certain body parts like the feet, such as wearing socks.

Not all topical treatments were uncomfortable and some people were really pleased with the result the next day. Lucy sometimes sleeps with olive oil on her scalp which she says soothes the skin and gives it a ‘good moisturise’.

Other concerns people mentioned about sleep/night time were worries about others seeing skin flakes on bedding (see also about house cleaning in the section about family and home life) and difficulties with taking/using treatments when staying over at someone’s house.

Megan wears bandages at night to help the topical treatments stay on her skin. She thinks it makes her look like an Egyptian mummy.

Age at interview 16

Gender Female

Age at diagnosis 7

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And then, before I’d go to bed, I’d put my cream all over my body, wrap myself up in bandages, and then wait for it to soak in just a little bit, so that when I laid down it didn’t like go all soggy, and the bandages get really wet. So, I like would walk around a bit, probably pacing around, and wait for it to like just soak in a bit, enough so that it wouldn’t get wet, and then go to bed. And then wake up in the morning, take it all off and go again.

How much sort of time do you think your routine with the creams and the bandages would take you?

It took me quite a while. It took like, I think putting the bandages on took like half an hour to an hour, because I had to make sure that I was using the right cream; and then making sure that the bandage wouldn’t affect the cream, so I had to make sure I put it on really carefully, and make sure the cream was still spread out.

And then taking it off in the morning was quite simple, because the cream had dried overnight, so it was quite simple just to take it off in the morning.

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Louie talks about having friends to stay over and staying at other people’s houses.

Age at interview 16

Gender Male

Age at diagnosis 13

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Having like dark sheets on my bed, like I wake up to like little flakes from my head on my bed and obviously it’s a bit of a pain but. Something that really works is me just getting a hairdryer and just getting it off and I know it sounds stupid but it does help. And like say if I’m having friends over or a girlfriend over, I do have different coloured sheets just in case so I can put them on so if I do have them round I don’t look-, well they don’t see flakes on my bed.

What about if you were staying over at somebody else’s house or if you’re going away for a weekend on a trip or a holiday?

That’s still quite a-, well not big issue but it’s a little issue, I do take pillows of which do have a white colour or a light colour of which you can’t see flaky, flakes on my skin or my scalp on it and so obviously I don’t get asked question and stuff like that. And I do make sure, I know it sounds weird but to someone with psoriasis you do sort of make sure where you sleep or where, where you’re staying is, is suitable. So for example say if you’re staying on a sofa and the sofa is a leather sofa I do-, I don’t do it on purpose but if I do wake up before anyone else, I do brush things onto the floor and stuff like that. Just to make sure people don’t ask questions and I feel bad obviously if it’s someone else’s house that I’ve done that but it’s something that I can’t control and it’s just one of those things I’ve just learnt to live with. And yeah, that’s it really, so I do take my own pillow when I go to places but that’s probably about it, or I take my own sheets for a pillow when I go to places.

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Family life and psoriasis

Some of the young people we talked to felt psoriasis had an impact on their relationships with family members and at home, in both good...