Sleep Disturbance in Youth With Chronic Pain

Ask a group of parents of youth with chronic pain how many of their children have difficulty sleeping, and most hands will go up. Sleep issues in this population make it hard for parents and their children to get the rest they need.

As we know, young children tend to go to sleep early and wake up early. In adolescence, their circadian rhythms change to a later bedtime and wake time.

But with chronic pain, this shift is often extreme, along with frequent awakenings during sleep. While some of the sleep disturbances are clearly related to being in pain, most youth with chronic pain still have difficulty sleeping, even if pain does not wake them up.

Sleep problems make waking hours more difficult. It is harder to push children to function through the pain if they are sleep-deprived. Being sleepy can also increase feelings of anxiety and depression, which are often intertwined with chronic pain.

And sleep deprivation itself can cause pain -- even among those who were not in pain to begin with! On top of it all, youth with chronic pain tend to need more hours of sleep each night than youth without chronic pain.

What can you do to help?

It is important to analyze what the source of the sleep problems are, which may require a therapist or someone who specializes in sleep CBT. However, here are ten tips to get you started:

1. Limit caffeine in the afternoon/evening

Many teens with chronic pain complain of brain fog, in addition to fatigue. In an attempt to try to focus on schoolwork, many will drink caffeine, which then makes sleep that night even more difficult.
It is a good idea to make a rule that caffeine can’t be ingested after a certain time. That time is different for each individual, so you may have to experiment with your teen to see what the cut-off time should be. While your teen will complain that the lack of caffeine will cause brain fog, the effect of sleeplessness due to caffeine also causes brain fog – it can become a vicious cycle.

2. Engage in a relaxing bedtime routine

It is a good idea to have a routine so that the brain begins to make the association between the routine and going to sleep. Beginning to dim the lights as the evening progresses is helpful in cueing the brain to start releasing melatonin, our body’s sleep hormone.
It is helpful if your child engages in a relaxing, calming activity, such as taking a shower or bath, reading with a lit scented candle, listening to soft music, coloring, journaling, or quietly chatting with you on her bed before going to sleep. Talking to your child when she’s in bed with the lights out is a great way to get her to talk about things that she won’t discuss during the day. The discussion will help your child get things off her mind, which may promote sleep.
Some people fall asleep better to white noise. I use a loud HEPA filter for that, but there are various machines and apps that also work. Others listen to music, an ASMR (autonomous sensory meridian response) app, or a guided imagery/meditation app. Some good sleep meditations can be found on these apps: Calm, Insight Timer, Headspace, Smiling Mind (good for younger kids), StopBreatheThink, and Simply Being. Have your child try different ones to see which they like.

3. Release the worries

We have all had the experience of turning the lights out and then worrying about what we need to do and so on. It can very effective, before turning the lights off, to write down everything that you will be thinking about when you turn the lights off. That way, when the thoughts start to creep in, you can tell yourself you don’t have to think about it because you have already written it down. This is something you can prompt your child to do in bed at night.

4. Turn devices off!

Once you start scrolling through Instagram or TikTok, it is very difficult to stop – it’s even harder for a teenager! It is important for teens with sleep trouble to charge their devices in their parents’ bedroom. This means you need to stay awake to take the devices, because – and this is another tip – if you go to sleep before your child, they are more likely to stay up much later.
I always went to sleep after my kids, even when they were teens, because then I could be there to make sure their devices were off, and they were going to sleep. As a therapist, my teen clients routinely tell me that their parents go to sleep before them -- and then the teens stay up until 3 a.m. on their phones.

5. Use the bed only for sleeping

This one is almost impossible with teens, especially since the pandemic and the advent of laptops. As best you can, though, encourage your teen to do schoolwork at a desk instead of in bed.
The goal is for the bed to be associated with sleep only. If the bed is associated with working, it becomes more difficult to fall asleep in bed. In addition, if your child has been lying in their bed all day, it is harder to fall asleep in it at night. If your child lies in bed all day, dozing off and on, have him spend at least part of the day on the couch or in a lawn chair outside.

Some kids will make a cozy area in another part of their bedroom to use for lounging, instead of the bed. That way, the bed remains solely for sleeping. If they are having trouble sleeping, they can go to their “quiet corner” to do something relaxing before returning to bed.

In a corner of my daughter’s small bedroom, we had a foam pad with a cover on it. She added pillows and big stuffed animals and called it her “Comfy Area.” Sometimes, I would find her asleep there in the morning because she’d go in it when she had trouble sleeping in her bed, and end up falling asleep.

I remember when I had trouble falling asleep as a child, I would reposition myself in my bed so that my head was where my feet usually were. Sometimes a change can help break the cycle.

6. Limit the time in bed when not falling asleep

Do not have your child get into bed until he is sleepy, but don’t wait until he is overtired, either, because that can lead to a different form of stimulation. Once in bed, have your child spend only 20-30 minutes awake. If not asleep yet, he should get up and do something quiet outside of bed, and then get back into bed. This way, the bed remains a calm place for sleep, rather than a stressful place of tossing and turning.

7. Have a consistent sleep and wake time

Try to keep bedtime and wake-up time around the same time every night. While I completely understand kids and teens staying up later on weekends and sleeping-in on Saturday and Sunday mornings, for kids with sleep disturbances, they should not sleep too late on the weekends.

Teens will tell me they sleep until 2 p.m. on the weekend, and then, of course, they can’t fall asleep those nights. If your child wakes up at 8 a.m. for school, try setting a wake-up time for 10 a.m. on weekends. Something reasonable is okay, but not so late that it hinders falling asleep on Sunday night, making it too difficult to wake up for school the next day. (Many kids with sleep issues tend to miss school on Mondays.) In addition, limit daytime naps, which disturb nighttime sleep.

8. Have your own beds

Parents and kids both tend to sleep better when they are in their own beds, in their own rooms. Many young people with pain disorders sleep in bed with one or both parents. Some have always slept in their parents’ rooms, and some start this because of pain during the night. I have found that it wears the parents out, making them more stressed and less effective during the day. In addition, even the kids sleep better when we move them into their own rooms.

Often, one parent is displaced from their bedroom, causing resentment towards the other parent and their child. Once we get the child into his own room, and the parents back together in their bedroom, the family dynamic also improves. Moving a child back to his own bedroom can be a tricky process that involves consultation with a therapist or behaviorist.

9. Do not cancel activities because of poor sleep

Try to not have your child cancel activities the next day because of sleep deprivation. That sets up the pressure at night to sleep, which makes it harder to fall asleep. If your child attends some of the schoolday, even if sleepy, he will realize that he can technically do it, which leads to less pressure at night to fall asleep.

10. Medications and Supplements

There are some medications and supplements (e.g., melatonin) that help with sleep. Other medications make sleep more difficult. If your child takes medications at night, ask your child’s prescribing doctor whether any of the meds may be keeping your child up and can be taken in the morning instead of at night.

All of these strategies can be difficult to implement. You may benefit from talking to a therapist or behaviorist about creating a behavioral plan to reinforce and reward your child for implementing some of these changes. Sometimes, just one or two of these changes can make a huge difference, and sometimes several changes are required.

In addition, some kids are awake because they are grappling with serious issues, such as trauma, that need to be addressed in therapy. For most typical sleep issues related to pain disorders, once the pain disorder is resolving, I have found that the sleep issues resolve, as well.

Until next time, happy sleeping!

Dr. Samantha Levy, Ph.D. is a clinical psychologist who received her Ph.D. from Georgia State University in the Child and Family specialty track. During her clinical, child centered internship at UCLA, she became involved with the Pediatric Pain Program. Subsequently, she obtained her postdoctoral training there. Depending on the specific situation, Dr. Levy works either with whole families, individual children/teens, or parents. She employs an array of psychological orientations (e.g. CBT, play therapy, mindfulness, hypnotherapy, ACT, IFS), to help the children/teens with their pain and any accompanying emotional issues. She helps the families understand the connection between the physical pain and emotional difficulties (mind/body connection). She teaches parenting skills and helps parents facilitate their child’s difficult, courageous journey back to functioning more fully in the world again. Dr. Levy runs the CHYP monthly open parent group and the CHYP small group parent groups.