How To Sleep Better When You Have Complex Regional Pain Syndrome (CRPS) or Chronic Pain
Learning top tips to help you get a better night’s sleep when you live with CRPS or chronic pain
Sleep is an important part of our lives and establishing good sleep practices is crucial. However when you live with chronic pain or pain conditions like Complex Regional Pain Syndrome you probably have many sleepless and restless nights. You may find yourself tossing and turning to try and find a good position to sleep.
There are many reasons why a good night’s sleep can be disturbed including work problems, illness, family troubles, relationship problems, pressure from work, redundancy and more.
Some of the factors that disturb your sleep may not be easily controlled but if you try to adopt a good sleep practice it may help you get a better night’s sleep. However chronic pain is also a reason why your sleep may be disturbed. Poor sleep when living with chronic pain is also a chronic problem.
There are many sleep techniques for pain patients including technological support i.e. apps that are available to help try and get a night’s sleep. But knowing a few sleep hygiene tips without using your iPhone or your tablet may be useful.
Not sure what sleep hygiene is? Sleep hygiene is a range of good sleeping habits and tips that are needed to give you a good night’s sleep.
To actually get to sleep, your nervous system has to calm down. If you live with CRPS or chronic pain, you will have a much more active nervous system, which can interfere with how quickly you fall asleep and how deep a sleep you get.
Sleep and Complex Regional Pain Syndrome (CRPS)
How does pain affect sleep?
Unfortunately, when you live with Complex Regional Pain Syndrome, chronic pain or another chronic illness, sleep may become a premium extra. You may struggle to sleep, your sleep may be interrupted, you may not be getting sufficient REM sleep or deep sleep to enable your body to try and recover.
Obviously, people living in pain who have difficulty sleeping, start to worry and stress over their sleep or lack of. You start to feel that your sleep is out of control and trying to rectify it can be very difficult.
You may also find that your pain itself can disturb your sleep and you may experience lighter sleep, leading to a poor quality sleep.
The problem is that chronic pain affects sleeping and sleep is affects chronic pain, therefore starting a vicious cycle and it is learning to break that cycle that is difficult.
What Is Painsomnia?
Those with chronic pain call the inability to sleep ‘Painsomnia’. As we’ve just mentioned chronic pain patients have a vicious cycle of pain – pain affecting sleep and sleep affecting your chronic pain. It keeps you awake or gives interrupted sleep then you can’t sleep when you’re tired.
You find that you can’t get into a comfortable position to sleep in. When you do, you then either start worrying about not being able to sleep or worry about other things that are going on in your life. You then start checking your phone, or turning your phone on to see the time, or flicking the TV on. Your body and mind will be completely exhausted and yet you are still unable to sleep. I think we’ve all been there haven’t we?
Eventually you do slip into a sleep even if it is a light sleep. Most pain patients find that their sleep is light and is constantly interrupted either by your pain or another of your CRPS symptoms.
Evidence does suggest that “insomnia as a feature of chronic disease tends to be more severe and persistent than insomnia that does not occur in the context of chronic illness.” Ancoli-Israel, S. (2006)
Effects of Lack of Sleep
Adults need different and varying amounts of sleep. On average you may read that adults need between 6-9 hours of sleep. But remember that everyone is different.
However it isn’t simply about the quantity of sleep you get but also about the quality of sleep. For example if you get light sleep, it isn’t the same as going through all the stages of REM sleep.
Lack of sleep can cause many issues including:
- Poor attention, concentration and memory
- Irritability and other mood disturbances
- Impaired judgement and reaction time
- Poor physical coordination (which can be dangerous for driving or using machinery
How Many People Suffer with Sleep Problems?
You are not alone!
“Sleep complaints are present in 67-88% of chronic pain disorders and at least 50% of individuals with insomnia—the most commonly diagnosed disorder of sleep impairment—suffer from chronic pain” (Finan, P. Et al, 2013)
In another study (Jank, R. et al, 2017) found that approximately a quarter of chronic pain patients suffered with clinical insomnia.
When someone lives with chronic pain, insomnia or other sleeping disorders can go hand in hand and it can be very stressful and distressing.
To fall asleep, your nervous system must have calmed down. When you live with chronic pain and in particular complex regional pain syndrome (CRPS) your nervous systems will be very active.
Many articles you read about sleeping tips for people with chronic pain or general sleeping tips usually talk about keeping a quiet environment to help you sleep. Unfortunately, when you live with chronic pain or CRPS having a quiet environment can do more harm than good.
When you don’t have any noise, lights, TV etc and everywhere has gone quiet, all you’re left with is your pain. You will then sit and think about your pain, how painful it feels and the pain intensity can worsen. This is because there is no sensory input to ‘distract’ you away from the pain that you feel.
Sleep Problems in Children with CRPS & Chronic Pain
Sleep problems are also prevalent in children with CRPS and chronic pain. Very often sleep disturbances are associated with daytime functioning in school-age children with chronic pain. In one study they suggested that assessment and treatment of sleep problems is clinically relevant. (Long, A.C. et al 2006)
Keeping a sleep log and pain diary can help work out if any pain increases can be attributed to poor sleep. If the child is too young to complete these then it’s important that a parent completes these trackers.
These 2 trackers can provide crucial information about sleep duration and sleep habits. Once this information is found any interventions targeting sleep problems in children with chronic pain may lead to improvements in functioning and better quality of life. (Long, A.C. et al 2006)
Sleep disturbances typically manifest as poor sleep quality, difficulty falling asleep, disrupted or fragmented sleep with frequent awakenings, and inadequate amount of sleep. Unfortunately, sleep disturbances are too often undiagnosed and not routinely assessed by clinicians. (Lewandowski, A.S. et al 2011)
Sleep problems may worsen the young person’s CRPS or chronic pain which can then have an effect on their school work, general fatigue, poor quality of life, school absenteeism and poor school performance.
14 Sleep Tips for Chronic Pain & CRPS
Learning some sleep tips will hopefully help you try and get some sleep or better quality sleep. Our 14 tips below are to help you get a better night’s sleep. The sleep tips below are suitable for both adults and young people affected by Complex Regional Pain Syndrome or chronic pain.
1. Only Go To Bed When You’re Sleepy
Remember that you can’t force yourself to sleep. Your body has to be tired before you can go to sleep. However please don’t get worried if you’re not feeling sleepy when it comes to bed time.
2. Get Up If You Don’t Fall Asleep Soon
If you don’t fall asleep within the first 15 -30 minutes of going to bed, get up and do something relaxing then come back and try again when you feel tired. If you worry about going to sleep this may make things a lot harder to fall asleep.
Instead to help you to feel sleepier, you need to do a relaxing activity to help soothe you such as reading, listening to music, knitting, colouring or practicing some mindfulness meditation or other relaxation exercises.
However for relaxation exercises or techniques to work you need to have practiced them beforehand. Therefore try different relaxation techniques during the day and keep practicing them, this will help you to use relaxation techniques at night time to help you become sleepy.
3. Prepare Distraction Techniques
Sometimes after you’ve tried everything or if you find you wake up in the night and can’t get back to sleep, you need to try something else.
Preparing some distraction techniques before you go to bed and have nearby can be a simple way to help you relax and help you drift back to sleep.
It’s important to try not to focus on your pain as that will feed into your pain and cause it to worsen.
4. Keep to a schedule
Try to wake up and get up at the same time each day, even during holidays and weekends and no matter when you finally got to sleep. By keeping consistent it reinforces your sleep-wake cycle and does help promote better sleep at night.
Try to also go to bed at the same time every night but remember to get up if you can’t fall asleep within 15-30 minutes.
Keeping to a schedule is good sleep hygiene as it will help to set your internal clock. This is what is called your circadian rhythm.
5. Take Care of What You Eat and Drink
Don’t go to bed when you’re hungry or full. Your discomfort may keep you awake.
Having rich foods, spicy, citrus, friend or fatty meals before bedtime can also have an effect on your sleeping. In some people these types of foods can also use painful heartburn and can take effect during your sleep.
Try and limit how much you drink to save you getting up in the middle of the night to go to the toilet.
Take caution on having nicotine, caffeine and alcohol, because the stimulating effects of nicotine and caffeine can time a very long time to wear off and alcohol may make you sleepy at first but then can wake you up later on.
You may read that alcohol helps you sleep. In fact this is only a short term solution. Alcohol stops the production of natural melatonin. Alcohol can help someone fall asleep but they will wake up after a few hours and can’t get back to sleep. (Queen West Physiotherapy 2014)
6. Create a Relaxing Bedtime Ritual
Doing the same relaxing activities every night before you go to bed to sleep can make your body realise that it is time to wind down. This may include taking a warm bath or shower, reading a book or listening to some soothing music.
We’re not talking about brushing your teeth, changing into your favourite pyjamas and reading for a while before bed. We’re talking about a relaxing and calming series of activities and actions to create a bedtime ritual to help yourself. This is also where your relaxation and mindfulness meditation exercises can come in. There is also evidence that using the psychological therapy of CBT or Cognitive Behavioural Therapy.
Try and stay away from TV and other electronic devices as some research has shown that they interfere with sleep.
Create & Incorporate A Calm Space of Aroma In Your Routine
Many people use smell to create a calming atmosphere. Using nice, relaxing smells in your bedroom can in turn help to calm and relax you. You could incorporate smells into your nightly routine using a smell that you like and you associate with calmness. Some people use incense, others use Lavendar and others use an aroma that they associate good memories with such as a smell you remember from a Spa day for example.
You could incorporate smells into your room by:
- Lighting a candle
- Essential oil diffuser
- Lighting incense
- Spraying essential oils on your pillow
7. Get Comfortable
Try and create a room that’s ideal for sleeping, one that is cool and dark. Try using room-darkening shades and earplugs to help you create your perfect room for sleeping. You could also wear a sleep mask especially during the summer months, when you may find it harder to fall asleep.
Sunlight naturally causes our circadian rhythm to adjust. When it is dark, it is this absence of light that gives a signal to your body that it’s time to sleep.
The room temperature is an individual choice, however an average temperature of around 65-70 degrees would be more helpful for a better sleep.
Mattress & Pillows
Both your mattress and your pillow can affect the quality of your sleep. Choosing what feels best for you is important. Remember there is no right or wrong choice, it is completely individual. However your pillow must feel comfortable to you that isn’t too hard. The same for your mattress, it shouldn’t be too firm as this can have effect on your body giving you extra pain in areas where you don’t currently have.
Your pillowcase’s material is something else to consider. What pillowcase material do you prefer or what is helpful to you if you have pain or CRPS in the face or neck? You may need to consider changing the material type for your pillow to all cotton, linen, polyester, flannel etc. The material of your pillowcase may be important especially if you have Complex Regional Pain Syndrome in your face, neck or shoulders and it causes skin sensitivities.
Also adjust your pillow height so your shoulders are not 90 degrees to the mattress. If you find your shoulders are 90 degrees or more from the mattress you could be causing extra strain and pain in your shoulders. In some cases this could trigger spasms in your trapezius muscles (Queen’s West Physiotherapy 2014)
Body pillows or pregnancy pillows can be helpful for CRPS patients and those with chronic pain to give them some stability or to help keep limbs from touching the bottom bed sheet.
Aids for Beds
Having Complex Regional Pain Syndrome (CRPS) means you have different signs and symptoms such as skin sensitivities for example allodynia and hyperalgesia. Very often you find that you can’t have your bed clothes touching your CRPS affected area(s). Finding something which will help you with this can be the difference in getting a little more comfortable in bed.
Bed cradles, also known as blanket cradles, are an excellent way of lifting the bed sheets, blankets and duvets off you. They are a very simple metal frame that either attaches to the bed or slides under the mattress and is placed over the body.
You can also get special bed cradles for the whole body. It is better to get an adjustable bed cradle so you can alter it’s height depending on leg size and bed size.
You can purchase bed cradles online via disability shops such as CareCo. However you can also ask for a bed cradle from your Occupational Therapist (OT). They may be able to choose one that is suitable for you and also help you fit it.
Some chronic pain patients like to use weighted blankets to help with their sleep. Weighted blankets are based on Deep Pressure Stimulation/Therapy. The main goal of Deep Pressure Therapy is to move the body from a state of nervousness and the fight or flight response into a state of relaxation and calmness. Deep Pressure Stimulation is a firm but gentle squeezing or holding that relaxes the nervous system.
8. Limit Day Time Naps
If you take any long time day-time naps this can interfere in your night time sleep, especially if you suffer from insomnia or poor quality sleep. If you do sleep in the day try to limit yourself to 10 – 30 minutes and have it mid-afternoon. Remember that napping does not replace for poor night time sleep.
Short naps of 20-30 minutes can help improve your mood and alertness, but it doesn’t replace sleep.
Obviously if you work nights then the day time rule doesn’t apply. However if you do work nights try and keep your window coverings closed so that sunlight doesn’t affect your day time sleep.
When living with CRPS or chronic illness you need to remember to pace yourself throughout the day and to give yourself sufficient rest. This doesn’t mean that you have to nap constantly throughout the day but by pacing yourself should help reduce the number of naps you have during the day. Learn more about pacing via our article.
9. Include Physical Activity in Your Day Time Routine
By doing some physical activity during your day time routine can help with your sleep at night, as it will help you fall asleep faster and you’ll enjoy a deeper sleep.
Timing is also important, so make sure you don’t exercise too close to bedtime as this will give you more energy so you will find it more difficult to sleep. It takes a long time to wind down after a period of exercise. It is advisable to stop exercising at least 2 hours before your planned bedtime.
However if you have mobility problems or you’re unable to do much physical activity, try to do chair exercises or incorporate some activity even if it’s a small amount.
10. Manage Stress Levels
If you have too much to think about or too much to do then your sleep will suffer. Try to find ways to manage your stress! Start with the basics such as time management, getting organised, delegate jobs, give yourself time to take a break as this is important, learn when to say ‘No’ and have a good laugh with a friend.
When you go to bed, note down what’s on your mind and set it aside for the next day. Learn more about Stress Management for CRPS & Chronic Pain via our article.
11. Limit Your TV or Phone Before Bed
You have probably heard or been told to stop using your mobile or watching TV at least 30 minutes to 1 hour before going to bed.
Your technology such as your mobile phone and your TV create ‘blue light’. It has been found that too much blue light before you sleep can affect the production of melatonin in your body. Melatonin is a hormone that controls your sleep cycle.
However when you live with CRPS or chronic pain you may find that the nights are the worst for your pain levels. Some people find that using phone apps such as Calm can help them with getting to sleep.
As we mentioned before, having no noise in your room when trying to sleep can have a negative effect on your level of pain simply because you have nothing else to think about except your pain.
However try not to be tempted to check your phone at 03.26am. There’s nothing you need to check on Facebook at that time! To reduce the temptation of checking your phone when you can’t sleep, some find it ueful to put their phone in another room, well away from your bedroom.
12. Know When To Contact Your Doctor
If you find you often have trouble sleeping rather than the occasional sleepless night, contact your doctor. They will try and identify with you any underlying causes to help you get a better night’s sleep. You may need to speak to a psychologist to help you cope with any mental health issues.
13. Write In A Journal
Some sleep experts have said that if you can’t get to sleep to write your thoughts down in a journal before you go to bed. There are many different ways you can use a journal to help you with your sleep:
- Write down your to-do list for the next day
- Write down your worries and stresses
- Write down the positives from the day
- Sleep diary or sleep tracker – detailing your night, food, drink, exercise, quality of sleep
- Do a ‘brain dump’ every night before bed
- Add a sleep quote or a positive quote on each page of your journal
14. Patient Tips on How To Get A Better Night’s Sleep With Chronic Pain
Here are some tips we have received from Complex Regional Pain Syndrome and chronic pain patients to help them get sleep or a more restful night.
- “I live by my portable DVD player on low volume and old box sets of sitcoms.”
- “I drink a supermarket cherry juice which you can drink either hot or cold with camomile in…its amazing.”
- “I used a face mask that you can put in fridge and wrapped round my ankle to cool it down”
- “I swear by my bed cradle it’s brilliant, it lifts up my sheets so it’s not touching my leg.”
- “Weighted blankets are fantastic and give me a sense of security.”
- “I like listening to white noise on a low level.”
- “I always have a spray bottle of Lavendar next to my bed to spray on my pillow every night before bed.” – Lavendar has a calming effect. If you are going to use Lavendar spray, please ensure you purchase natural essential oil to make sure it is safe for you to put your head on.
- “I always have a glass of warm milk before I go to bed and I have now included it into my nightly routine.”
Chronic Pain and Sleep Conclusion
As you have read, even though you may find sleep difficult when you live with chronic pain including CRPS, there are many ways you can learn and use to improve both your quantity and quality of sleep. Knowing how to try and get some quality sleep when you have chronic pain can mean a big difference to you and your level of pain.
What are your top tips to get a better night’s sleep when you live with Complex Regional Pain Syndrome or chronic pain? Share your tips in the comments below.
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- Lewandowski, A.S. et al (2011) ‘Sleep Problems in Children and Adolescents with Common Medical Conditions,’ Pediatr Clin N Am 58 (2011) 699–713. doi:10.1016/j.pcl.2011.03.012
- Long, A.C. et al. (2008) ‘Sleep Disturbances in School-age Children with Chronic Pain,’ Journal of Pediatric Psychology, Volume 33, Issue 3, April 2008, Pages 258–268, https://doi.org/10.1093/jpepsy/jsm129
- Mayo Clinic (2014) ‘Sleep Tips: 7 steps to better sleep,’ Mayo Clinic website. 2014, June 9. Available from: http://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/sleep/art-20048379
- Moeller, A. (2016) ‘5 Little known Tips for Sleeping with chronic pain’ Spine Health. Available from: https://www.spine-health.com/blog/5-little-known-tips-sleeping-chronic-pain
- Queen West Physiotherapy & Acupuncture (2014) ‘Pillows – Happy Sleeping!’ Queen West Physiotherapy & Acupuncture blog. Accessed April 2020. Available from < https://www.queenwestphysio.ca/strategies/sleeping>
- Tang, Nicole K Y. “Insomnia Co-Occurring with Chronic Pain: Clinical Features, Interaction, Assessments and Possible Interventions.” Reviews in pain vol. 2,1 (2008): 2-7. doi:10.1177/204946370800200102
- Zilca, R. (2014) “Three Bedtime Reflection Routines To Help You Sleep” Psychology Today. September 2014. Available from: < https://www.psychologytoday.com/gb/blog/confessions-techie/201409/three-bedtime-reflection-routines-will-help-you-sleep>