Living with Hypermobility: hEDS & HSD Management

Do you struggle to manage your hypermobility symptoms day-to-day? Addressing the little things can help.

All Images By: Taylor Oakes

One of the topmost questions I get asked by clients with hypermobility (inclusive of hEDS & HSD) is how to go about managing a “normal” day. Flares associated with hypermobility come and go and require their own set of management tools, but learning to thrive within the demands of work and life means figuring out day-to-day body care staples.

When we build habits that increase baseline health and tolerance to output (read: get through days with greater ease), flares derail us less often and for shorter durations. Everyday actions define our outcomes more than any acute intervention or treatment, which isn’t to say the latter are not necessary, but instead to emphasize that doing the little things daily leaves us less at the mercy of needing them in the first place.

Although we’re all a little different, here are the most impactful strategies that have helped both myself and my HSD & EDS clientele over the years:

Daily Movement

The first few hours of each day are often the roughest for people with hypermobility (regardless of sleep quality), but rest assured: How you wake up is not an indication of how your day has to go.

Honing a non-negotiable movement practice to start your day can make all of the difference in everything from pain to mood, and to remind your joints of where they ought to be, particularly if they have a tendency to migrate a bit overnight.

If you enjoy working out, that is excellent, but just to clarify: Training sessions are not the same as having a daily movement practice centred around getting joints moving and stabilizing. What we suggest here is the sort of thing that could take you 5-15 minutes and should serve as a daily morning check-in that can be done more or less no matter what state you’re in.

What To Do:
  • Move through the available ranges at the joints that are “speaking to you” and then bring focus to the areas that are moving well. Getting wrapped in the spiral of listing everything that hurts only drives pain higher- pain loves practice and thrives on it.
  • Use ground-based or wall-based movements to help stabilize your shoulders, spine, and hips. Consider drawing from gentle movement practices like Animal Flow basics, FRC, Qigong, or anything of the like.
  • Avoid strenuous or fast-paced exercises and static stretching.
  • Take time to stand barefoot and balance on one leg while slowly shifting your gaze.
  • Check-in with nasal breathing and consciously slow it down.
  • Check in with our Movement blog for ideas on how to start

 

 

Soft Tissue Work

This may go hand-in-hand with your movement practice or could be interspersed at other points in your day. Although beneficial, it’s important not to go overboard or smash tissues- the tension complaints of humans with hypermobility relate to tissues working way too hard to keep things in place. Aggressively smashing tissues can make things far worse just as a very “thorough” massage can do more harm than good. Light soft tissue work can be applied strategically in order to improve blood flow to an area or bring a bit of relief.

Remember that to make any tissue change permanent, frequency of practice and movement to “activate” the tissues is needed. We cannot get treatment to an area and walk away owning a new position that someone else has put us in; the same holds true with self-applied soft tissue work. It is best applied when paired with subsequent movement of the limb or tissues that you’ve just rolled out.

What To Do:
  • Use soft tools that help you keep your pressure on the area at a 5/10 or less.
  • Target areas like your shoulders (pecs & upper traps) after extended periods of sitting or standing
  • Use a wall to roll out your hips rather than the floor to allow tissues to more readily relax over the tool and avoid unnecessary pelvic adjustments.
  • Roll each area for 60-120 seconds at a time and focus on slow steady breaths.
  • Avoid any bony areas or spots that elicit nerve pain up or downstream.
  • Stay clear of susceptible joint junctions, particularly if you know that it is one that subluxes (ex: rib heads, tib-fib).

hypermobility soft tissue work

 

Sitting and Standing Props

If you’re lucky enough to work from home, you’ll have greater flexibility in your setup than if you’re at an office or in a school classroom. Consequently, you may have greater flexibility in changing positions as often as you like which can lead to much greater comfort and focus throughout the day. Regardless of whether you’re at home, at an office, or at school, there are still some props you can use to make static positions more comfortable, thus preserving brain power for the tasks at hand.

1. Obus Forme

This Sit-Back cushion is by far one of the most successful tools I’ve found for all environments inclusive of travel for both myself and clients on the hypermobility spectrum.

hypermobility obus formeIt can be used either as a seat cushion or as low back support and this versatility alone makes it worthwhile over some of the more cumbersome and single-purpose support options. Bringing your pelvis and low back into a supported neutral alignment can help prevent pain not only in your hips, pelvis, and low back, but also upstream into your shoulders, neck, and head: Whatever we do to our lower back alignment will impact all joints upstream for better or for worse.

It is an incredibly lightweight and flexible cushion which means that it can easily be carried or folded and stuffed into a bag when not needed. I’ve travelled the world with it and can attest to how much of an impact it makes in the ability to function after even the smallest amount of time spent in a car or plane.

2. Standing Desks

hypermobility standing deskIf you’ve only ever studied or worked sitting, then a standing desk won’t be a panacea to being pain-free but it is a great option to add in variability to the loading demands throughout your body. When you do stand, try having a foot propped up on something as this will help you retain a more upright posture and prevents most people with hypermobility from completely sitting/dumping into their low backs. That said, switch up which foot you’re lifting and try your best not to slouch forward against the desk.

Pictured here is a higher-than-average standing desk that was built to minimize the degree of downward flexion needed at the neck and to fully support the forearms in order to reduce strain on the shoulders.

3. Meditation Stools
Ikuko Meditation Stool by Bluecony

Ground-sitting is great for all bodies (especially to those on the hypermobility spectrum) and is more natural to us as human beings than are chairs. That said, extended periods of time spent on the ground aren’t always comfortable or feasible for hypermobile bodies, just as the same can be true for being seated in a chair. Enter, the meditation stool: Built to naturally support a better pelvis position and to reduce acute pressure on joints relative to being on the ground. If you need to work or read, use one of these stools and sub-in a coffee table, ottoman, bench, or chair as a desk.

4. Pillow Forts

hypermobility pillow fortA simple but effective habit for anyone with hypermobility, using pillows and props to help support passive positions (such as hanging out on the couch) can really spare the body. Just having a pillow on your abdomen can help immensely with being able to relax. A common issue for the hypermobile is having to hold excessive tension through every daily task which leads to greater fatigue, brain fog, and soreness/discomfort. As a result, relaxing can feel unsafe, but it is nevertheless important to establish in order to recover and gain energy.

What To Do:
  • Take stock of your most commonly-held daily postures and be sure that you are switching things up to introduce greater variability. The more you’re able to create options in whatever space you have, the better off you’ll be as far as pain management, focus, and energy.
  • Make it a priority to move around, change levels, or positions every 30 minutes.
  • Try using your non-dominant arm more often when you switch things around to prevent fatigue and to avoid consistently twisting to one side.

The little things add up: It is common for clients with hypermobility to wonder why X hurts and they’ll immediately jump to analyzing their gym, physiotherapy, or exercise regime to ascribe blame. While these can be important variables to check-in on, the first priority should be given to daily patterns, postures, and how you’re passively using your body day-in, day-out during brain-heavy tasks.

 

Bags, Satchels, and Packs

hypermobility bags and packsIt won’t surprise any hypermobile person to hear that what they wear on their body really matters. From bra straps to tight seams and heavy coats to the “wrong” shoes, a body with hypermobility is a more sensitive one: Whatever we place on it, there will be a reaction one way or another (if this weren’t the case, we wouldn’t bother with braces).

It therefore stands to reason that if we choose to carry an external load- like a bag- we should also consider its weight and how it sits on our frame. Side bags and cross-body purses are incredibly common because of their small size, but the uneven carriage of them is enough to throw off shoulders, necks, and hips alike. If an object impacts your gait, it will impact how you feel after prolonged exposure.

Back in university I didn’t think twice about wearing my heavy backpack paired with a cross-body laptop bag for long walks to and from campus because it was simply what was needed. In hindsight, the reason behind the hip pain, sciatica, and lop-sided neck and shoulder tension I developed is now pretty obvious. It can be easy to ignore the body when we're on autopilot with a busy schedule, but ignorance isn’t without consequence.

What To Do:
  • Consider switching any side-carriage bags or purses to a backpack
  • If you have to carry it for extended periods, go small. And then go smaller. Limit yourself to a bag that can only weigh as much as a full kettle. I ignored this advice for a decade and I have paid the price in spades.
  • For daily backpacks, check that they sit in the small of your back and are not hanging down below your SI joints or tailbone (regardless of size). If you have any shoulder, neck, or low back issues, it behoves you to do this.
  • If you are training for an athletic event such as hiking or portaging, place your heaviest items at the top of your pack and invest in a pack that has a base that sits above your SI joints. There are some wonderful options now that even swivel with your gait to keep the weight more centred.
  • If you don’t need to carry one, don’t. Many people leave the house with more than they need- I’m a big proponent of going on unimpeded walks so that you can swing your arms freely and just work on your own body’s mechanics without added load.

 

Music and Breath Work

hypermobility braintap musicWith hypermobility, sleep can be an extreme sport: A significant number of hypermobile people become worse at sleeping over time due to muscle guarding, anxiety, flares, subluxations, and pain that drive us out of parasympathetic activity. We’ve previously written about natural strategies to resolve poor sleep patterns and insomnia that carry a big impact when applied over time. That said, if you have trouble falling asleep at night, need to take a 10-20 minute power nap to get through your day, or are trying to meditate but have a hard time calming down your brain and/or body, music can be a powerful tool.

As with all other tools (save for pharmaceuticals), you do need to give your system time to practice and build recognition. In other words, you need patience and repetition to develop trust and a sense of safety in your system: If you are a shallow breather, are often short of breath, always wake with a dry mouth, or have a hard time unwinding despite how exhausted you are, these are all indications that your system is on overdrive in a stress state. While our breathing is regulated by our autonomic nervous system, it does not mean that we cannot influence it consciously- it comes down to practice, which can be made easier with tools such as music.

Music can improve mood, pain, anxiety, sleep latency (i.e. time it takes you to fall asleep), and stress. It has been used in trauma therapy, learning environments, stress and depression-reduction programs, and is by no means a new tool to humans (just take a brief foray into mental health research, neurological research, and anthropological studies for some great evidence of its varied use by our species). While you can play around with variations of classical music that bring about calm due to their frequency (such as Mozart), you can also use Apps that have set programs designed specifically to help improve wellbeing.

What To Do:
  • Create a classical or binaural beats (Theta or Delta Wave) music playlist to use anytime you nap, lay restfully, or are trying to fall asleep. Your brain will start to recognize this as a sign of it being time to unwind.
  • BrainTap is an app that can be used with or without a headset (which combines light to the sound therapy) to retrain your nervous system and to reestablish a sense of calm. The free version can give you a sense of whether this might be the right approach for you before you invest in the full program.
  • The Safe and Sound Protocol is another such tool that was developed based on Dr. Stephen Porges’ Polyvagal Theory. They have multiple options inclusive of working with a Home Program, Dreampad program, or with a professional.
  • Commit to consistency for 3-4 weeks. The first few times you listen to something new, your brain may be preoccupied or “interested” in paying attention to it. With a little bit of practice it will grow accustomed to the tracks, so we suggest that once you’ve found something you like give it 30 days of consistent use. This is where classical and binaural beats are recommended as their frequencies are those that our brains associate with relaxation- your regular music tastes won’t have the same impact.
  • Start assessing your breathing throughout the day and while you're resting to gain insight into your system's state of arousal.
  • Check out the EDS Movement Blog and EDS Insomnia Podcast for insights on breathing or the Guide to Better Sleep blog.

Summary & Questions to Consider

  • What are some of the daily tasks that your body requires? Can you break them into small parts and train them?
  • Do you have tools to help bring you relief, even on your worst days?
  • Do you focus on movement and sensing, or have you been taught a “muscle” approach?
  • Have your joints adopted a guarded posture out of fear of your personal ranges?

If you adopt a curious mindset and tune into both your emotional response and bodily reactions, you can reap the benefit of rewiring your patterns, your brain, and ultimately your pain. Even with Hypermobility Ehlers Danlos Syndrome, we have the opportunity for neural plasticity: our bodies and brains can change at any age. As EDSers, it's a fact that we may have inherently poor proprioception and there will be activities that won’t serve our structure well. There are, however, countless other ways of moving that can help us thrive every day; changing our stimuli can change our lives.