Sleeping and AS. Putting painsomnia to bed.

It's not just you

Painsomnia – poor sleep due to pain – is a condition that for many of you with AS needs no introduction. In fact, although 4am can feel like a pretty lonely place, poor sleep is a common part of life with AS. Nearly two-thirds of participants with AS reported disturbed sleep in one study;1 another identified a significant relationship between AS, poor sleep quality and pain.2 People with AS regularly sleep less well, for less time and feel the negative effects of their poor sleep the next day.3 Pain is a significant factor: summing up their study, the authors describe the relationship between pain and sleep as a “chicken and egg” problem – it was hard to tell which factor was responsible for the other.3

This post offers some honest advice for people with AS who want their sleep back. If you’re someone who has battled poor sleep for years, this post promises no miracle cures. There’s nothing worse than getting ‘can’t fail’ sleep advice from people who appear to have no problem getting a solid 8 hours a night. Instead, This AS Life tries to tease out some practical advice from the anecdotal. They may not all work for you, but they’ve at least been shown to work for people (including people with AS) who’ve had trouble sleeping.

Drugs aren't always the answer

Painsomnia is miserable and sapping: the pain from the day eats into sleep at night, then lack of sleep at night eats back into the days. It’s a vicious circle – one that many hope to break with painkillers or sleeping pills. The topic of pain control is a little beyond the scope of this post and something you probably have a lot of experience with already. It’s a conversation best had between you and your doctor, where you can talk about the best treatments available on prescription and over the counter.

Where good sleep is concerned, take your pain control as near to going to bed as possible and ask for long-acting medications. These are two ways to get as much pain control for as long as possible, before pain starts to degrade your sleep or, worst of all, wakes you up.

Clinicians are very reluctant to prescribe sleeping pills like benzodiazepines (especially for long-term conditions like AS) because their positive effects wear off fairly quickly. In fact, those who take them develop a tolerance in days or weeks and the side effects from withdrawal can be severe.4 Sleeping pills also tend to knock people out, rather than offer the restful sleep they were hoping for. They also take a long time to clear out of the body, making people feel groggy long into the next day.4

Some swear by over-the-counter sleep remedies, others find them less helpful. The chances are you’ve already tried these, but they’re definitely something to explore if you haven’t (after checking with your doctor for any possible interactions with your current medications).

Pre-sleep tactics

There are several sleep strategies you might want to try before you get to bed. Even if the benefits aren’t clear, complimentary and alternative medicines are widely used by people with AS to help ease their symptoms.5 Techniques like acupuncture and reiki are often recommended for pain control and (if nothing else) often leave people feeling relaxed and in a better mood, which would help promote a good sleep.

There are dozens of environmental changes you can make to help improve your chances of sleep, with light and noise (eye masks/ear plugs), heat (electric blanket/air conditioning), sleeping position (orthopaedic pillows/beds) and good ventilation all having a potentially positive part to play. Avoiding caffeine from the late afternoon onward (or completely) is another tip, as is avoiding excessive alcohol: it’ll help you to nod off, but doesn’t promote a long or restful sleep.

Routine, routine, routine

Healthy sleep works in cycles; poor sleep knocks this cycle out of sync and makes sleeping more difficult and more erratic. Try and stay disciplined about your sleep – get into the habit of going to bed at roughly the same time and resist the urge (immense though it may be) to excessively lie in, nap during the day or go to bed too early. Keeping a good sleep routine helps train your sleep cycles back into their old rhythm – and stops them getting any more out of sync.

Nap apps

It’s a common adage that there’s an app for everything and painsomnia is no exception. While there are no specific painsomnia apps, there are apps to tackle many aspects of the problem. A huge range of sleep quality monitors are available – apps that monitor your noise and movement patterns to gauge your sleep patterns and problems, then offer solutions. Other, more complex (and costly) systems offer similar sleep insights by monitoring your heart rate instead.

If solving the problem is more important to you than diagnosing it, the number of ‘self-help’ sleep apps is legion. Breathing exercises, guided meditation or mindfulness tutorials of various hues are available. All try to help you come to terms with your sleeplessness, relax and focus on drifting off, instead of your pain and frustration.

For less self-directed somnolence, there are apps that play you nature sounds, relaxing music or even a variety of rain noises. These aim to soothe and sedate restless sleepers. For the less spiritual (or more cynical), making a personalised music playlist or downloading podcasts might be another way to take your mind away from pain and sleeplessness and focus it somewhere more positive.

If it's not happening, don't fight it

Beating insomnia is the art of trying to get to sleep without really trying – the more you stress out at your wakefulness, the more awake you’ll end up being. It’s the key to getting to sleep and it’s far from easy to do. At a certain point of the night, if you’re still awake, just accept it, get up and do something else for a bit. Although opinions differ, changing the field conditions for a short time then trying to sleep again can be more productive than simply lying in bed getting more frustrated at your own lack of sleep.

Getting support from other people can be a good idea too – it might not directly help you sleep, but it’ll make you feel better in the dead of night to know there are other people out there having a disturbed night for the same reasons. There are numerous forums, Twitter users and other places on social media available. It’s a great way of getting in contact with people – day or night – to talk to about painsomnia and to get moral support, advice and companionship.

There are lots of complex, inter-related factors that have a negative effect on your sleep: pain is just one of them. Depression and anxiety play their part too.3 Tackling these, along with your pain and symptoms, can be a big positive factor in getting your painsomnia under control.3

Good luck and, above all, good night.

Produced by the editorial team writing for ThisASLife.com.

1. Hakkou J et al. Rheumatol Int 2013; 33(2): 285–290.
2. Batmaz I et al. Rheumatol Int 2013; 33(4): 1039–1045.
3. Li Y et al. Arthritis Res Ther 2012; 14(5): R215.
4. Ashton H Curr Opin Psychiatry 2005; 18: 249–255.
5. Chatfield SM et al. Clin Rheumatol 2009; 28: 213–217.

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