Hypermobile Ehlers-Danlos (hEDS): Overcoming Insomnia
Being chronically tired limits recovery.
Here is the day time guide to better sleep.
For anyone living in chronic pain, restful sleep is a bit of a unicorn. In these cases, insomnia is often rebranded as painsomnia, as a representation for the vicious cycle of pain and chronic fatigue that comes with insomnia. It’s admittedly adding a bit of insult to injury to have sleep - a typically blissful and restorative human activity- be interrupted incessantly by pain (or by the resulting adrenaline dumps). The irony of being tired to the bone but unable to achieve restful sleep is not lost on anyone who experiences insomnia. Although getting to the root of it can be challenging due to the countless variables that can influence it, there are natural solutions that can ease the process.
I’ve suffered from insomnia for as long as I can remember; vivid dreams, nightmares, rushes of nighttime adrenaline, pain, muscle cramps dismissed as ”growing pains”, and unexplained wakefulness have been my normal from my teens into my 30s. As I became worse at sleeping, my stubbornness and coping skills thrived as I somehow managed to achieve a fair bit in a rather unwell state of chronic sleep deprivation: I’d cycle from tired, to burnout, to survival mode, then would crash every 3-4 months. From a crash, I’d crawl back up to a fatigued coping-mode only to rinse and repeat the whole cycle and wonder why I couldn’t stay on top of it. While I was aware that this was not how my peers operated, I was living my reality while keeping pace with life and the demanding work hours therein. I had even- for a time- accepted that this was just how things were and made peace with it as best I could.
In 2016 my insomnia developed into nighttime panic attacks and was at its most aggressive: I slept so poorly that I managed to break teeth (see our podcast with Dr. Bruce about that), and it’s now no wonder I had headaches on waking. It was further compounded by a brain stem & spine injury in 2017 at which point I was lucky to be able to stand on my feet at 7pm, just as I was lucky if I could sleep past 2am: Body pain, adrenaline rushes, an inability to breathe laying on my back, rat-wheel work brain, and everything in between would keep me up. It became a running joke that if any of my friends or colleagues woke in the night, I’d be there to chat because I was usually distracting myself with work by 3am. A colleague at the time informed me that periods of insomnia were normal; I didn’t have the nerve (or energy) to reply that over a decade of worsening insomnia seemed like the last thing that could be described as "normal" human physiology, even if accounting for “normal” variances.
One day, while injured and trying to push through to keep up appearances, I accidentally fell asleep in a closet at work while retrieving some material. I wasn’t asleep for long but I felt ashamed and worried that I’d let my co-worker down. A year or two after that incident, I gained a little more clarity on where I should rest my concerns: If you’re falling asleep mid-stride, don’t apologize for doing so and instead do let go of the shame that does nothing but get in the way. Understand that your system is no longer crying for help but is instead screaming for it.
Throughout 2018, I was forced to put a full-stop to the pace at which I had lived for quite some time. I thought that sleep would come easily but it didn’t. Why? For me, it was because my nervous system (and sense of self), was so used to running a mile a minute over years of adaptation that it didn’t know how to sleep until it hit a crash every few months. In short, it was very well practiced at not sleeping. While there are simple and effective things you can do to improve your sleeping environment, as laid out in our Guide To Better Sleep, there are countless habits done during the day that will dictate whether or not you’re able to achieve restful sleep. How you sleep dictates how you perform the next day but the reverse is also undeniably true. In my opinion, not enough attention is brought to that and we wait until night-time to address the elephant in the room.
While I’m not perfect, I have slept more restfully in the last 18 months than I have in most of my adult years; waking is usually limited to some flare-related cyclical dislocations/subluxations and none of them involve panic attacks or skull-crushing grinding (although the frequent tailbone migration is still just as unpleasant). This article explains some of the things I’ve changed and other successful strategies used with clients. It is by no means an exhaustive list but if we prepare ourselves for sleep during the day, we have a greater chance of achieving it each night, over time and with increasing quality.
1) Get outside and seek daylight:
Vitamin D is a key anti-inflammatory agent and catalyst in building/maintaining good bone density: Musculoskeletal diseases or disorders, cardiovascular risks, and Type 2 diabetes are linked to low Vit D levels. Further to that, the benefits to blood pressure, cardiovascular risks, and mood are all related to direct exposure from UVA rather than strict Vit D supplementation; UVA promotes an increase in nitric oxide from the skin resulting in a widening (vasodilation) of blood vessels and is proposed to have anti-inflammatory effects.
“People who don’t get enough sunlight have altered cellular defence mechanisms that predispose them to excessive inflammation, which can result in autoimmune diseases.”
Our circadian clock relies on us being exposed to daylight at the right time of day: even with a sleepless night, be sure to get up and out at some stage in the morning hours. If your skin is not exposed to sunlight, your cells will not know when it is time to function vs. rest, and sleep will become harder to achieve. Even in cold weather, daily sunlight is non-negotiable.
1. A little dose of sunlight can prove therapeutic and although most will need to supplement Vit D in the winter, try your best to always get into the sunlight before noon.
2) Move your body
Restlessness can keep us up and cause further muscle twitching or cramping and pain. The right dose of movement is one of the best ways to clear excess adrenaline to combat this at night. Additionally, the brain stem gathers information from both your mental state (stress, emotions, etc), and physical state (energy, tension, digestion, HR to name a few), to determine whether or not to induce sleep.
I can relate to the effort required to move on the days where you feel plastered to the couch/bed/floor with fatigue and discomfort but I can also speak to how much better life gets after some blood flow and change in stimulus takes place.
1. Even if you’re tired, make an effort to move in some way every day: Whatever is within your capacity, do it. Start with moving on purpose 10 minutes 2x/day and gradually increase as you’re able.
2. Head out for a walk or some gentle floor-based exercises to get the ball rolling in the right direction: The worst days and nights are usually the ones following a day or days of immobility (which includes travel). Long term deconditioning can add to the issue.
3) Reduce your daytime breathing rate
Your breathing rate (breaths per minute), subconsciously increases with talking or when under stress. As such, pain is a stressor that typically elevates breathing rates or can result instead in breath holds as a form of bodily "preparation" against threat. Ultimately, this impacts your heart rate by driving it up, which is especially relevant if you suffer from dysautonomia. It's important to know that this is a key vital sign we can positively influence with conscious input.
"Our breathing reflects every emotional or physical effort and every disturbance." -M. Feldenkrais
If you are experiencing vivid dreams, adrenaline rushes, or waking up with a dry mouth, these are signs that you are deprived of restful sleep of which daytime overbreathing is a contributor. In turn, this causes further stress, anxiety, and exhaustion thereby perpetuating the cycle. Deconditioning can contribute to overbreathing during the day (14+ breaths per minute or mouth breathing). EDSers don’t recover easily as it is, so leveraging daily waking life habits to improve sleep- our mainline of recovery- will only help our outcomes.
1. Become aware of your daytime breathing: ensure that it is through the nose when not speaking and remains slow and soft in light of pain vs. fast and shallow. To practice, take time to consciously slow down your exhales by aiming for under 10 breaths per minute at rest and closer to 5 per minute if you’re trying to induce sleep. In these moments of focused practice, take note of allowing the abdomen to relax (especially helpful to check in around meals).
2. If you’re in pain, try humming while still maintaining nasal breathing to increase nitric oxide production and, as such, reduce HR and blood pressure.
4) Check your water and caffeine intake
Simply put, everything within our body relies on water. In the person with hEDS, low water intake can contribute to gastro issues and drive inflammation in an already prone system. Relying solely on food intake for water is unwise as was suggested by the study referenced in Dr. Heidi Collins’ talk. While it is recognized that the 8 glasses rule is inaccurate, denying the need for additional water outside of food may be misconstrued in a population suffering from comorbidities such as POTS and MCAS that add stress on metabolic processes. If your body is working hard to digest, move, and live, it’s likely in your best interest to tune into thirst signals and drink some water. As a guide, if you’re forcing water down after having consumed a fair bit, you’re probably overdoing it; research published in 2016 showed we have a natural swallowing inhibition to consider.
On that note, the tendency for many sleep-deprived or low energy people is to have caffeine at all hours (coffee, black tea, green teat). If you suffer from insomnia, high stress, and experience high levels of body tension, avoid all caffeine- from coffee or tea- after 9am. Using it to combat fatigue in the day only serves to run systems down.
1. Avoid all caffeine (if you do consume any), after 9am or try going without altogether for a week at minimum.
2. Start your day with a full glass of water prior to all other liquids and solids. Pay attention to thirst signals and increase water intake with physical output or high sweat days. *If you have POTS, increased water and salt intake is a strategy to help manage blood volume and reduce symptoms.
5) Eat dinner early; really early
Many people with hEDS have GI tract issues related to motility, allergies, permeability, functional dyspepsia, MCAS, and IBS to name a few. Moving the bodily task of eating as far away from the task of sleeping can improve both. Even the average person does not sleep as well on a full system although many have habituated themselves to going to bed somewhat full (and in relative terms, can often get away with it). In the chronic pain population, intermittent fasting has been suggested as a useful strategy in reducing pain sensation and promoting neuroplasticity (brain re-learning). With that in mind, eating early isn’t about controlling weight so much as reducing bodily tasks, promoting higher sleep quality, encouraging GI recovery time, and benefiting from lower inflammation as a result.
This is perhaps one of the most impactful habits that we have adopted in our household and that clients report as being pivotal to managing inflammation, energy, and sleep quality. Social settings often have people eating later and we've collectively normalized this but it does not cater to how our bodily systems function. Making the effort to break a potentially very well established habit takes time but it is worth the effort.
1. Try giving your body a full fighting chance to digest before you sleep by moving dinner 2-4hrs prior to your planned sleep time. Or use sundown in fall and winter as a guide for when to be done eating.
2. Use the 3 day strategy: Move dinner 30 minutes closer to your goal time for 3 days before moving it earlier again for another 3 days until you achieve your optimal dinner time.
Understand that this may not happen 7 days/week due to life factors, travel, etc. but if you are making a conscious effort to eat as early as you can 5-6 days/week you should notice change sooner vs. later.
6) Eat well and consider magnesium
GI issues including Mast Cell Activation Syndrome, discussed in our EDS Digestive Health article, affect a very large percentage of the EDS population. There is no optimal intake for all humans and people with hEDS will have to experiment to find the right strategy for themselves. What we do know to be true, however, is that food is a direct message to our immune system, genetic expression, and brain. The human microbiome (gut bacteria) can modulate pain sensation and affect tissue sensitivity, composition, and inflammation. As such, it is in our best interest to tune into choices around food sources and timing, exercise, and our breathing/stress state as they all contribute to regulating the biome. We encourage all clients to emphasize whole food sources as the staple of their daily intake: It has become normal in our society to consume predominantly processed foods rather than "waste" time on food preparation but this comes at the expense of our health. While food should be the primary focus, a Magnesium (Mg) supplement can be of help to those with hEDS as it is is involved in over 300 bodily functions from energy production to sleep and absorption issues means that the hEDSer is at high-risk for Mg depletion.
“The chronic diarrhea and fat malabsorption resulting from Crohn’s disease, gluten-sensitive enteropathy (celiac disease), and regional enteritis can lead to magnesium depletion over time”
1. Focus on whole food sources that are low in sugar (including fruit), and pay attention to bloat, pain, etc. Gluten and dairy are often culprits in exacerbating symptoms so it can be worth exploring their removal.
2. Consider a Mg bisglycinate supplement in the evening and consult your ND or GP. Avoid Mg citrate as that can increase GI tract issues, and Mg oxide which is very poorly absorbed.
7) Ditch screens and use airplane mode
It’s sometimes hard to believe that this one bears repeating but screens (namely phones & tablets) are quite addicting, so even the best of us still get looped into bringing them into the bedroom. There is sufficient evidence that screens and blue light disrupt our circadian rhythm and the content of said screens are just as problematic (See our Guide to better sleep article).
Unless you are on-call for emergencies, there is absolutely no reason to have your phone on in your bedroom. None.
1. Ditch screens such as the phone, tablet, or TV at least 2 hrs before bed. Remember that the content is addictive and be kind to yourself in breaking the habit if it has been a longstanding part of your usual routine. Consider setting a specific cut off time outside of the bedroom and stick to it.
2. Pick up a book instead, start writing, drawing, listening to music, or talk to a loved one.
I have seen sensitive young athletes develop periods of anxiety-induced insomnia directly correlated with drama that they’re looped into on their phones. Being hooked into social media, the news, or upsetting messages is not what our brains were built to contend with no matter our age. Be kind to your nervous system and shut that stuff out.
8) Weighted blankets, bolsters, and pillows, oh my
A weighted blanket serves as sensory modulation, creating a calming effect on the nervous system: This is particularly relevant for those suffering from anxiety, chronic pain, and poor sleep quality. By design, they prevent overheating in a way that piling on heavy duvets cannot. Most companies have suggested weights based on your size and, as such, do not pose risk to a hypermobile structure. During wakeful periods, the stimulus can add comfort and encourage a sense of calm to return back to sleep. Bolsters and pillows can add further structural safety to allow tissue relaxation without subluxations.
1. Consider a weighted blanket and find a pillow that accommodates multiple comfortable positions for your neck and shoulders (and one that doesn’t warp easily with time).
2. Bolsters used by your chest and abdomen can further support your structure and allow your tissues to properly (and safely) relax at night.
I’ve been through countless pillows to find one that wouldn’t force my neck or shoulder into a position that would result in subluxations or autonomic problems and I flip my mattress every couple of weeks for the same reasons. Everyone is different so it may take some experimenting; I personally use a Nirvana blanket, Nite Hood, Casper Pillow, and smaller pillows/stuffies as bolsters for arms, sternum, & hips. It feels silly but it works.
9) Emotions and language
The words and emotions we use impact our experience in the world which extends to our experience of sleep. Yes, insomnia can feel like a very cruel form of bodily attrition but it is important not to take it personally and start describing it as who you are. I am not a psychologist or certified in CBT but can attest to the importance of tuning into the emotions that surround your sleep experience: Getting angry, anxious, or frustrated is unproductive and can create its own vicious cycle to heighten tension at night. Learning to find peace (how you manage that is personal) and build daytime strategies can bring back a sense of control and calm throughout the experience.
1. Tune into and make effort to clear negative emotions that surround sleep. Go to bed as peacefully as you can and let go of beliefs that it is a scary, frustrating, or vulnerable place to be.
2. If emotions get high at night on waking, leave the room, walk around and focus on settling your breathing, doing some gentle movement or soft tissue work. Only stay in your room if you can remain peaceful (and comfortable).
3. Keep laptops, phones, other tasks away from your bed so that you don’t keep the association of work or stress nearby at night. Do not make screens an option (speaking as someone who made that mistake). If you need to nap in the day, try the couch instead.
10) Engage your senses and embrace practice
As previously mentioned, this is not an exhaustive list and this last note is the most ambiguous-sounding of the tools. Consistency breeds proficiency at whatever you set yourself to- if you consciously practice going online at 2am, your body becomes better at waking you up at that hour. Our internal environment is sensitive to all external inputs and this includes the subtleties of what we eat, watch, who we speak to, and the thoughts we have throughout the day: The great news is that these are all within our ability to influence, embrace, or remove.
It is every human's job to build mental and physical awareness around what riles us up during the day, what brings us down, and what leads to better sleep: Our bodies are constantly sensing and engaging with the environment and with our thoughts so it behoves us to understand their language.
For a time, I had to create firm boundaries around when I'd take meetings (never after 12:00pm), who I'd interact with (some people are just more high strung and you're allowed to say no), and stopped apologizing for not being as available partly by challenging my own beliefs that I was "failing" someone else in doing so. I made clear cut hours about when I'd go into sensory "deprivation" for the evening which involved classical music, reading, writing, light-therapy, and no new work requests. I was far from perfect but consistency helped me to trend strongly in the right direction for my own physiology. Those are personal examples and this is not to suggest that you have to become obsessive and controlling, or to live in a bubble so much as benefit from becoming aware and removing the stimuli that don't serve you.
1. Track your sleep without tying emotion to the outcome; you may start to notice a pattern of what leads to the "better" nights. Do certain interactions or events keep you up or put you out?
2. Say no: If going out late, engaging with specific activities, watching scary things (very relevant to today's TV world), or having certain conversations will knowingly set you back, you have every right to say no. It may not feel easy, but you're not a bad person for taking care of your needs.
3. Use music and check other inputs: Music is a powerful tool to bring people up, calm them down, and generally alter nervous system activity. This is a tool I've relied heavily on since I was 15 and will invariably keep my system down-regulated and mentally calm at night even if it's hard to fully sleep.
With sleep comes greater tolerance for all stimuli. To that point, everyone has a personal range within which they can operate very well: This is more about finding where you need to start and discovering your range of "input tolerance" over time while you acquire the tools to settle your system for sleep.
Sleep is hardwired into our system and in the long run will outperform any drug or supplement. When insomnia has become chronic, it will take practice and patience to restore our natural rhythms. If we can hone in on the daily basics, we can gain greater success in sleep and recovery. Finally, the pace at which you live life- too fast or too slow for your system- both carry their own risks. I loved going a mile a minute for a very long time; I loved helping people at any and all hours until the only person I wasn’t helping at all was myself. No matter how blissful your bedroom is, overlooking the daytime impact on sleep will keep you from achieving it. Troubleshooting, remaining curious and applying changes is not always straightforward but it is always worth the effort; embracing the belief that the story can change is a great place to start.