Sleeping with hypermobility: A comprehensive guide

Estimated reading time: 7 minutes Whilst much of the discussion around hypermobility and EDS focuses on movement, a common source of anxiety, frustration and stress for those living with such conditions comes from the other half of our lives – sleep.

Whilst much of the discussion around hypermobility and EDS focuses on movement, a common source of anxiety, frustration and stress for those living with such conditions comes from the other half of our lives – sleep.

Many people living with EDS have huge difficulties when it comes to getting enough quality sleep. Whether it’s “painsomnia” and inability to fall asleep, difficulty getting comfortable, sleep apnea, dysautonomia, or MCAS – many things we experience can impact our ability to get good quality sleep. Yet it is so necessary!

It is important to note that fatigue and sleepiness are different, though they can be hard to tease apart. According to The Zebra Club  visitor, exercise physiologist Emily Cochrane, they differ in that fatigue is not improved with sleep. You can read more about fatigue and PEM (a hallmark of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome or ME/CFS ). This post focuses on sleep so that we can optimize and improve the sleepiness part of the picture.

 The crucial role of sleep in well-being

When we sleep essential activities in our bodies happen including cellular repair, toxin clearance, information processing, and memory consolidation. It is a very complex process involving numerous neurotransmitters, hormones, and brain pathways (1).

 You may have heard of the circadian rhythm – here’s some science

This is a rhythm that our bodies have to ensure that at the basic level our cells “get the right materials at the right place at the right time”. This rhythm is thought to be driven internally and synchronized by our 24-hour external sun cycle (1). This is why we sleep at night and are awake during the day.

The retina of the eye contains a small amount of cells called photosensitive retinal ganglion cells (pRGCs) that are activated by blue light. These receptors sense the light we see and send signals to a region of the brain (suprachiasmastic nuclei or SCN). That region (SCN) then interacts with 35 other regions of the brain to regulate function – including the hypothalamus, a region of the brain responsible for hormone release. Other signals from the body are involved, but the SCN lets the body function with the light/dark cycle (1).

Maintaining the circadian rhythm is so important. Disruption in the circadian rhythm can impact our normal hormone production, including maintaining the normal balance of cortisol leading to higher levels, and an altered sympathetic nervous system response. This can have an effect on things like glucose release, heart rate, blood pressure, the immune response, tissue repair, memory and thinking (1)

Take home message: while it is hard when dealing with our conditions, it is so important to try and maintain a circadian rhythm.

Challenges of sleeping with hypermobility and EDS

If you have a hard time with sleep, you are not alone. In one study of people with hEDS/HSD, 90% reported not feeling refreshed when they woke up, 70% reported being woken up with discomfort, and 69% difficulty getting to sleep (2).

• Sleep Apnea
  • Sleep apnea is common in EDS (5.3 times higher than age, height, and weight matched non-EDS controls) and may be a leading cause of unrefreshing sleep (3, 4). Sleep apnea is reduced airflow or completely stopped breathing caused by the collapse of the upper airway (3). There are many things that can be tried to address sleep apnea and airway issues and it is definitely worth addressing with your medical team.
• Restless Leg Syndrome
  • RLS is the urge to move the legs while awake and is often worse at night, it is a sensorimotor condition. RLS was found to also be associated with Mast Cell Activation Syndrome (MCAS). People with MCAS had 4.6 times greater chance of having RLS than the non-MCAS spouse control group (5).
• Pain
  • We all know pain can make it hard to both fall asleep and stay asleep. The good news is there are things we can do to address the three types of pain (https://jeanniedibon.com/the-3-types-of-hypermobility-pain-by-dr-leslie-russek/).
• POTS
  • People with POTS often find it difficult to fall asleep at night though the reason is unclear. There are theories like being in a hyperadrenergic state, interaction between the autonomic nervous system and melatonin secretion, and inhibition of melatonin by beta blockers (6, 7). Melatonin is a hormone in the body involved in sleep.

Managing pain through better sleep

Doing all you can to improve sleep hygiene and enhance sleep quality is something I recommend to every client I see. People who experience symptomatic hypermobility and EDS, in particular, have much to gain from a good night’s sleep. A better night’s rest will help with energy levels, focus, and coordination the next day. Making getting to sleep a less stressful experience will help to relieve tension in the body that could lead to further pain.

Pain and sleep are quite obviously related – but the direction of that relationship is highly debated. Does pain cause poor sleep, or does poor sleep cause pain? I often hear that pain makes it hard for people with hEDS/HSD to fall asleep, and see that lack of sleep can lead to increased pain. While it is well-known that there is a link between sleep and pain, the mechanisms underlying have not been found yet (8).

Optimizing your sleep environment

Many of us with hEDS/HSD and other conditions that come along with it are quite sensitive to temperature and have a difficult time regulating our temperature. It may take some trial and error, but it can be so helpful to find the right temperature for your needs. Do you sleep better when it’s cold in your room or do you have a hard time getting warm? Layering with different blankets may also be helpful so you can adjust if needed.

Weighted blankets have also proven popular for bedtime sleep aids. These work by providing gentle pressure across the body, which may promote relaxation and reduce anxiety, leading to better sleep. It is important to choose a weighted blanket that is appropriate for your own body weight to experience the most sleep benefits. Some find it helpful to use a lighter weight than recommended.

Discovering the best sleep position for your needs

Getting comfortable at night can be so hard when you are experiencing a lot of pain. Thankfully there are many different types of pillows to try, but not just for your head. Many members of The Zebra Club Community are fans of pregnancy pillows that you can use to help position your body in many ways. You can use them upside down and use the pillow you have found supports your neck the best.

Make sure your whole body, especially your neck and head, are properly supported – invest in bedding that provides real support. You may find it more comfortable when side sleeping to use a pillow between your knees or the length of your leg. If you are sleeping on your back a pillow or two under your knees may take the pressure off your lower back. Investing in a comfortable mattress is a popular idea – this may take some investigation to find the best mattress to suit your body.

Check out my video on pillows here.

 Small steps for optimizing sleep

It’s important to do as much as you can to create the right environment for sleep. Focusing on a set routine and calming actions will help put you in the right frame of mind once bedtime draws near. Otherwise, your anxiety and stress levels are likely to build throughout the evening, meaning you head to bed in exactly the wrong frame of mind needed to get a good night’s sleep.

• Get outside in the daylight – this can help regulate the circadian rhythm. Even when it’s cloudy you are still getting more daylight than when indoors through windows (9).
• Having a regular bedtime and wake time and maintaining regular sleep patterns (if possible!) are associated with a variety of positive health outcomes (including mental health, brain health, cognitive function, bone health, and health-related quality of life (10).
• Having a bedtime routine that you do every night will help to signal to your brain that it’s time to switch off. Involve as many pleasant elements into your routine as possible – a bath, candles, a chamomile tea. These will help you to approach ‘going to bed’ in a more positive frame of mind.
• Avoid screens – this isn’t just about stimulation. As mentioned earlier, receptors in the eyes are sensitive to blue light and can decrease your body’s natural melatonin production (1).
• Movement during the day can help you feel more awake as you get going in the morning and help you fall asleep at night. Working within your personal limits or “energy envelope” is important
  • Gentle movements can also help you wind down and prepare for sleep. We have a whole section of classes called Sleep and Fatigue in The Zebra Club App that can help you wind down and regulate the nervous system.
• Meditation is a great way to calm the mind and prepare for sleep. We have a meditation section on the app including a community favorite Sleep Meditation by Psychotherapist Kim Cleyden designed to help you ease your way into sleep.
• Essential oils like lavender, chamomile, bergamot, and ylang-ylang can help provide natural, relaxing, and soothing smells.  Choose one that suits you, especially if you are sensitive to smells.

A bedtime exercise to try

For those struggling with pain, it is essential to create a state of calm and relieve existing pain in the body. This will immediately remove some of the anxiety around getting off to sleep and release tension in the body, helping you to relax.

Before you go to bed tonight, try the following simple breathing exercise:

1. Once in bed, close your eyes and visualize a place either real or imagined. A place that makes you feel safe, comforted, and supported.
2. Really picture it, feel it, smell it, hear it, breathe it. Picture yourself there.  Put yourself in this special place.
3. Allow your breathing to reflect how happy you feel in this place. Notice the breath gets longer and calmer – allowing your body and mind to relax.
4. Then, choose a phrase that means something to your sleep routine such as ‘I feel safe’, ‘I will sleep well’, and ‘I am calm’.
5. Every time you exhale repeat this phrase to yourself in your head.

With every repetition of the same phrase with your calming breath work, you will initiate the ‘relaxation response’ in the body.  This is a proven method of relaxation, but you must keep repeating the same phrase for it to be effective.  Repeat this phrase for as long as you need to drift off to sleep”.

Whilst sleep presents many difficulties for those with EDS, it’s essential to try to reduce the anxiety you associate with it. Relaxation is a powerful tool for those who struggle with pain, and small steps can make the difference towards a more restful night.

Check out this video on sleep for a little chat on sleep and a sleep movement practice

Literature Review and Research by Catherine Nation, MSc, PhD

Works Cited

1. Foster (2010) Sleep, circadian rhythms, and health. The Royal Society: Interface Focus
2. Krahe et al (2017) Features that exacerbate fatigue severity in joint hypermobility syndrome/Ehlers–Danlos syndrome- hypermobility type. Disability and Rehabilitation.
3. Gaisl et al (2016) Obstructive sleep apnoea and quality of life in Ehlers-Danlos syndrome: a parallel cohort study. Thorax.
4. Castori et al (2012) Management of Pain and Fatigue in The Joint Hypermobility Syndrome (a.k.a. Ehlers–DanlosSyndrome, Hypermobility Type): Principles and Proposal for a Multidisciplinary Approach. American Journal of Medical Genetics.
5. Weinstock et al (2020) Restless legs syndrome is associated with mast cell activation syndrome. Journal of Clinical Sleep Medicine.
6. Miglis, MG (2017). Sleep and the autonomic nervous system. In M. G. Miglis (Ed.), Sleep and neurologic disease(pp. 227–244). Elsevier Academic Press.
7. Mallien et al (2014) Sleep Disturbances and Autonomic Dysfunction in Patients with Postural Orthostatic Tachycardia Syndrome. Frontiers in Neurology.
8. Babiloni et al (2019) Sleep and pain: recent insights, mechanisms, and future directions in the investigation of this relationship. Journal of Neural Transmission.
9. Wirz-Justice et al (2021) The relevance of daylight for humans. Biochemical Pharmacology.
10. Chaput et al (2020) Sleep timing, sleep consistency, and health in adults: a systematic review. Applied Physiology, Nutrition, and Metabolism