Does your management of hypermobility consider the following areas of influence?
As discussed in Parts 1: Stress & Anxiety, Part 2: Hormonal Cycles, and Part 3: Digestive Health, management of Hypermobility Ehlers-Danlos Syndrome (EDS) requires addressing much more than musculoskeletal pain and subluxations/dislocations. That said, managing musculoskeletal pain and the demands of daily movement is of utmost importance, and doing so has a positive knock-on effect for all of the previously discussed areas.
Chronic fatigue, POTs, gastrointestinal issues, dislocations, subluxations, poor sleep, high stress, excess muscle tension, anxiety, depression, self-confidence & safety, chronic pain, joint degeneration, and deconditioning can all be dramatically improved-upon with a proper plan and personalized movement strategies.
Note from Freyja: The irony of this post is that although movement coaching and pain-solutions is my professional focus, this article has been the hardest one to write. Why? Because although I have Hypermobility Ehlers-Danlos Syndrome and coach others with the condition, there isn’t ONE right movement-answer or dosage for everyone. Much like diet, the same movement dose that can allow one individual to thrive can cause harm to another: Our ethos as Move Daily is to Do No Harm. This article has been written to bring thought to why movement is needed, to encourage people to seek it out, to be aware vs fearful, and to offer a few considerations along the way. With that said, this is in no way intended to give anyone a prescription. I am regularly referred clients who were injured by following generalized online strength programs or by working with professionals who didn’t understand the “why” behind movement prescriptions, particularly for the hypermobile human.
Just because you can, doesn’t mean you should. Just because you can’t now, doesn’t mean you won’t later.
Movement, Exercise & Hypermobility
There is no question that movement matters now more than ever for a society that is largely defined as sedentary (especially relative to a few decades ago). At Move Daily, we’ve included movement as one of our Five Pillars of Health for this very reason: Humans were built to move by design; doing so improves mental health, joint integrity, quality of life and reduces the risk of all-cause mortality (as outlined in many of our articles).
So where does movement fit-in with a subset of the population that has inherently poor proprioception, lax connective tissues, greater end-ranges of joint-motion, and that experiences frequent subluxations and musculoskeletal pain?
In short, carefully and with patience.
Barriers to Moving
Before going into the why or what of movement for the hypermobile population, it’s important to touch on the barriers that get in the way of moving; namely, deconditioning and kinesiophobia.
One of the greatest challenges encountered with Hypermobility Ehlers-Danlos Syndrome is that the diagnosis can often come at such a point that people have removed a significant amount of movement from their lives due to pain. Movement itself then becomes associated with further anxiety and fear, the extreme of which is known as kinesiophobia:
"An excessive, irrational, and debilitating fear of physical movement and activity resulting from a feeling of vulnerability due to painful injury or reinjury” - Kori S, Miller R, Todd D. Kineisiophobia: a new view of chronic pain behavior. Pain Manag.
Both Kinesiophobia and Deconditioning present as relevant risk factors to increasing central pain sensitization or complications with comorbidities across other bodily systems. Deconditioning alone can result in general whole-body weakening, worsening proprioception, increased autonomic disturbances or GI issues, and introduces a significant risk of cumulative injuries (dislocations, subluxations, etc). In no uncertain terms, a healthy nervous system relies on movement to thrive: To accomplish sound movement, we require conscious awareness and need to establish a sense of safety within our bodies.
“Various studies have demonstrated that exercise and fitness are beneficial in a biomedical sense of maturation, strengthening, and healing of bones, tendons, and muscles, while deconditioning refers to a progressive process of worsening physical fitness as reduced muscular activity” -
Hypermobility Ehlers-Danlos Syndrome can benefit from movement and/or exercise for a multitude of reasons.
- Muscular tension: Muscles are your natural braces to stabilize joints and reduce subluxations. We may still require some braces, taping, or aids, but their use will be less frequent or fewer joints will require them if we remain as conditioned as we can.
- Tension reduction: From seized tissues: Hypermobile individuals often experience the sensation of knots, tightness, and rigidity in muscles to account for lax connective tissues. Learning how to both reflexively contract (develop muscle tension), and relax is important for our stability, sleep, and pain reduction.
- Pain reduction or management: Moving changes the stimulus to our brain (and musculature), creates a positive endorphin effect, and can down-tune pain as a result.
- Mental health: Cardiovascular activity in particular has long been known to help manage anxiety, stress, and depression.
- Digestive health: Movement helps regulate motility of the digestive tract and, as such, can dramatically improve hip & back discomfort associated with slow motility or inflammation.
- Cardiovascular Conditioning and Management of POTs: Movement helps strengthen your heart and can further help by clearing excess adrenaline associated with POTs.
- Recovery & Sleep: Our sleep cycles depend on output through movement. For a population prone to wakefulness and insomnia, getting daily movement stimulus becomes even more critical (read more on insomnia management here).
- Competency: Learning what movement input suits you and increasing that capacity slowly helps reduce fear when subluxations occur. Acquiring tools to help self-manage outside of treatment is key for long term success.
- Confidence & Freedom: Increasing movement capacity reduces fear and increases confidence throughout daily life.
Last but certainly not least, being conditioned and strong within your own body builds the reserves to recover from health events if and when they occur.
What does this mean for you?
Incorporating movement into your daily regime is crucial in managing Hypermobility and, as much as possible, long stints/days of rest or house-bound time should be limited to avoid deconditioning. Staying in bed for extended periods without ambulation can decrease lung capacity, alter metabolism, GI function, decondition tissues and increase resting heart rate by 0.5 beats/day.
Knowing where to start can be daunting; if you’re deconditioned or at a standstill then it is best to seek the guidance of a health care professional who understands the impacts of EDS & HSD and who can assist in developing a safe personal plan that you can execute at home. A therapist or coach who works with EDS or HSD patients will be able to provide the support needed to gain confidence and increase strength for daily life or otherwise.
Setting a safe starting point:
If simply reading about deconditioning, kinesiophobia, and movement makes your HR go up, your mouth dry, and your neck tense, then your first step before anything is to tune into your breath. Breathing is at the base of all stability and is a vital sign that is easily monitored as it changes and responds to our environment, our thoughts, and our emotions. Practicing slow and steady nasal breathing prior to every meal, before attempting any exercise, and while walking or doing physical tasks can give you a head start on staying stable. Not only that, if you are managing POTs, conscious breathing is your gateway to your autonomic system. It is also of note that overbreathing (aka chronic hyperventilation) is a common, but preventable, reaction to exercise for the deconditioned EDSer. As such, this piece cannot be overlooked within any movement program.
2. Focus on conscious movement, not muscles
Our bodies do not think in terms of muscles and, as such, trying to stabilize by thinking in this way can prove both overwhelming and ineffective. Instead, think of the common tasks in your daily life and start there to understand the physical demands that apply specifically to you.
Imagine your daily movements: Do you often have to get in and out of a car? Do you stand for long periods of time? What movements and parts of your body fatigue first? Or where do you lose control within the movement?
For the car or sitting/standing example, learning how to breathe, brace, and strengthen your feet are some of the first stepping stones necessary to work towards your personal full-range squat.
3. Start small and then go even smaller.
In general, people with Hypermobility Type EDS do not recover as readily as the body-typical human, particularly in areas that have additional laxity due to injury. As a result, it is best to start any “new” stimulus or exercise by going small in dosage and repeating for at least 7 successful days before increasing any variable.
For the previous example of getting in and out of a chair, you could practice by holding onto a door frame and lowering yourself with support while staying firmly planted on both feet. Repeating this 3X slowly before each meal can be a safe place to start. After 7 days of that dosage- provided it is starting to feel easier- you can increase the repetitions slightly from 3 to 4 or you can use a little less support on the door frame.
Conversely, if you are getting feedback from your body that the dose is too high, then you can start with a bit more support to reduce muscular effort or create a smaller range of motion by adding a pillow to the chair. The variables are endless but small changes done with awareness and patience will yield positive results long-term.
4. Get to know your ranges
“If we have the capacity to move there, we have the potential to get injured there, so we must have the desire to get strong there” - Joe Lavacca
One of the biggest mistakes I’ve seen is individuals with hypermobility being told to only move through half of their available range or to “microbend” joints (largely elbows and knees) at all times. From what I have seen in practice, people who have been given this approach have chronic muscle tension, worse proprioception of where they are in space, and fear around full ranges of motion.
To be clear, I am not suggesting you stretch (at all), push your end ranges, or dump into your hyperextended joints. Nor do I suggest that you add much- or any- external load: Pushing ranges in a stretch or loading up heavily add unnecessary strain to connective tissues that do not have the inherent integrity to tolerate such stressors.
As an example: If you are trying to “correct” a hyperextending knee by thinking about chronically bending it, this is a very muscular and isolated approach that can be very hard to sense in space. Not only that, it is very hard to keep monitoring it in this way throughout our day! By contrast, if we improve proprioception on weight distribution through the feet and increase communication with deliberate movement from foot --> hip --> trunk then we have brought greater understanding to the whole body. Because the feet are so rich in feedback, cueing someone to focus on a micro-bend at their knee without addressing the foot upwards through the trunk is an ineffective “muscle-dominant” way of thinking. Giving the body a skill-based movement task - i.e communicating through multiple joints- can be a more intuitive way to maintain position with less mental effort over time.
If we return to thinking about movement and not muscles, then it is fair to say that your body needs to first understand where your personal ranges take you. It needs to have a sound brain “map” of:
- Where all joints exist in space in order to create conscious control.
- A sense of safety and ability to control movement in order to also relax.
Limiting the range you can control (out of fear & learned habit), reduces body awareness and introduces a greater risk of injury in the areas we don’t learn to explore.
To reduce injury risk and build relative strength needed for daily life and activity, safety within the nervous system is key: Part of that requires a focus on knowing where we are in space rather than fearing it.
5. Seek options & use visualization
As humans, we can all benefit from being generalists in both movement and thinking; a broad scope of experience allows us to be flexible and responsive to new challenges in our environment or life. Managing Hypermobility Ehlers-Danlos Syndrome can present frequent challenges thanks to its influence on all bodily systems. As such, when it comes to movement or exercise, diversifying your options can go a long way towards building confidence, promoting better physical outcomes, and maintaining a baseline of health and resilience.
First and foremost, I encourage you to seek movement strategies and activities that can bring you relief, stability, and strength to live each day with more ease. From there, work to add in activities that you enjoy or can do with others as it will make the worst days easier to manage. Diversifying movement options means there will always be some way to sustain baseline health even with limitations.
Finally, work on proprioception each and every day: Be curious about sensing your tissues in space, even when you’re lying down, at rest, feeling stress, or doing daily tasks. For new movement tasks, visualizing is a tool that all athletes use to hone in on a skill set to further engrain it in their minds & bodies and help make it automatic. Hypermobility type EDSers can benefit from the same thing: Even though our capacity to practice may be lower, time spent visualizing and sensing our tissues can dramatically improve our awareness in space and reduce risk.
Summary & Questions to Consider
- Have you eliminated a lot of movement and activities from your life due to prior injury, pain, or fear?
- 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 we may have inherently poor proprioception, and there are of course activities that really won’t serve our structure well. There are, however, countless other ways of moving that can help us thrive every day; changing our stimulus can change our lives.