Mindful Movement, Ehlers-Danlos Syndrome, and Hypermobility

Estimated reading time: 6 minutesMost of us have probably heard of mindfulness if we live with chronic pain. It is often suggested that the practice of mindfulness can be helpful in pain management.

I think it is really important to clarify that suggesting this does not mean that people think the pain is in our heads and we can ‘think’ our way out of pain.

There is a great deal of research into mindfulness practices, largely in relation to chronic pain, but not in relation to hypermobility and Ehlers-Danlos Syndrome. A recent systematic review found that mindfulness interventions were beneficial in reducing pain intensity (1).

I think if something potentially works for chronic pain management, it can help with hypermobility management. The main reason people come to see me or join The Zebra Club is because they have ongoing pain that is difficult to manage.

But what is mindfulness?

It is the practice of bringing your full attention to the moment, without judgment.

We ideally want to foster an attitude of openness and curiosity in a non-judgmental way. It can be hard to be non-judgmental here – we can be hard on ourselves and can lack self-compassion.

Mindfulness involves noticing our thoughts, feelings, and sensations as they are, without trying to change them or resist them.

We can practice mindfulness through breath awareness, meditation, or simply being present in the moment while doing our everyday activities.

So, What is Mindful Movement?

Mindful movement takes that concept a little further by adding movement practices to mindfulness. I found this invaluable to my own personal practice as I rehabbed myself from the chronic pain of my hypermobility.

I was in a body that had caused me pain, injury, and this was something I only noticed properly when it started to complain and hurt.

Mindful movement allowed me to take a radically new approach to my movement practice.

It is the practice of bringing our focused awareness to the body as it moves, paying attention gently to sensations, breath, alignment, and intention.

We are fully present when moving – whether we are doing a movement class on my YouTube channel, attending an in-person class, out walking, or simply participating in daily activities and chores.

We try to avoid being on autopilot because it is in paying attention that we can start to make changes.

I am a huge fan of the quality of movement over quantity. I would rather my clients did two or three reps well with awareness, integrated breath, and control, as opposed to three sets of ten done in a rush without proper attention to form and bodily signals.

Mindful movement may be one way for people who struggle with practicing mindfulness to access mindfulness training (2). I have found it to be particularly helpful for neurodivergent patients who may find meditating or breathwork alone challenging. Adding movement can be a welcome addition.

The Benefits of Mindful Movement

Here are some of the benefits of mindful movement:

• Improved body awareness – This is really important in a body with EDS. Understanding how our bodies feel and move can aid in better alignment and injury prevention. We become aware of habits or movement patterns that may be contributing to our pain.
• Enhanced nervous system regulation – Mindful movement supports a calmer, balanced autonomic nervous system which is especially helpful to chronic pain conditions, EDS, and dysautonomia.
• Pain reduction – Research supports this in chronic pain patients. One study on EDS patients found that an online mindfulness program significantly reduced pain intensity and improved quality of life outcomes in EDS participants (3).
• Greater control of movements – Mindful movement brings our attention to how we move, and how fast or slow we move. I highly recommend slow movements, as this builds sensitivity to our proprioception.
• Stress relief – Physical movement with a mental focus can help reduce anxiety and stress. A meta-analysis found that mindfulness interventions had an impact on reducing anxiety and depression (4).
• Better pacing – It helps us tune into our bodies more, our energy levels, and signals that we need to stop and rest. This is crucial for those managing fatigue conditions or post-exertional malaise (PEM).
• Improved posture and breathing – we become more mindful of our alignment and breath. This can enhance our overall movement patterns.

A different approach to exercise with Ehlers-Danlos syndrome

With hypermobility and EDS, we know that patients lack proprioceptive awareness. This lack of awareness can lead to uncontrolled movements that potentially lead to sprains and injuries.

With a slower, mindful approach to movement as developed in my Integral Movement Method, we can build control, confidence, and gentle self-compassion.

All too often, we can feel that we are not listened to and sometimes experience increased pain or injury due to exercise or physical therapy (5,6). This understandably can increase fear of movement.

Mindful movement practices give us the space to go low, go slow.

To pause, to assess, and work at our own pace.

Through mindful movement for EDS, we can

• Promote joint stability because it encourages controlled, intentional movements.
• Reduce the risk of injury – by going slow and paying attention to alignment and sensation, we are less likely to overextend, lock joints, or continue to use habitual movement patterns that may not be beneficial. In the qualitative study of my online modified Pilates program based on the IMM, comments included “the slower pace helped me not injure myself”(7).
• Improve proprioception – mindful movement helps retrain the brain to sense joint position and body position. This can help improve coordination, balance, and control.
• Feel safe with movement – many people with EDS are fearful of movement due to poor past movement experiences. Gentle, mindful movement can help soothe the system, shifting us into a parasympathetic state. One participant in our study stated
  • “The course had a psychological impact as well. I was able to feel safe and seen on a level I have never experienced before when starting a new exercise program”(7).
• Build a compassionate relationship with ourselves – EDS can feel frustrating. We may try an exercise, and we go too far unintentionally and hurt ourselves. Mindful movement encourages a more supportive, nonjudgmental attitude where people can connect with their bodies in a new way.

Mindful Movement as Meditation or Dynamic Meditation

Traditional meditation practices usually involve sitting or lying still and focusing the mind on the breath, an object, or a word or mantra.

It can help reduce stress and build mental stillness and clarity. This is a great practice that does not involve physical movement.

If stillness is challenging, mindful movement meditations can be a great addition. We move with softness, fully present in our breath and aware of our body moving in space.

In particular, I like to tune into sensation when moving. The feel of the weight of the body, the pull of gravity, the sensation of the bones moving slowly in space.

Many of the classes I have created for The Zebra Club in the Mindful & Stress and Sleep & Fatigue sections of the app integrate this practice of dynamic or moving meditation.

Tips for getting started with mindful movement

My IMM is an integrated approach.  The five overarching steps guide you into mindful movement, starting with Unwinding.

• Go low and Go Slow– Try starting with short, gentle sessions or snacks. Deliberate, slow movements to give you time to notice how your body is feeling.
• Breath – the first principle of the IMM. Use it as your thermometer. It will tell you how you are feeling – anxious, relaxed, calm, etc.  Notice where the breath goes, how it feels, how it moves around the body.
• Quality over quantity – it is not about high intensity, high reps. Focus on smooth, controlled movements rather than speed.
• Curiosity – Can we be curious, not critical? Approach each move with curiosity – how does this feel, do I enjoy it?  Back off if something feels unsafe, or increases pain or instability. Try to explore with kindness, there is no perfect way to move. Just what feels right for you.
• Use supports – if you need extra supports like pillows, blankets, seated in a chair, or on the bed, that is perfectly ok. Use what you need to feel safe. Feeling safe in our bodies is essential for nervous system regulation.
• Little and often – it is better to do a couple of reps regularly. Consistency is key in brain retraining.
• Create a calm place to practice if possible – initially, a quiet space where you won’t be interrupted can be helpful. Soothing music, scents, soft blankets – whatever you like for a mindful practice.
• Enjoyment – I would like everyone to enjoy movement. We often see exercise as a chore, something we have to do, but mindful movement can foster pleasure in moving and being present.

Ready to try it out? Here is a 20-minute mindful movement hypermobility flow to get you started!

FAQ

What is Mindful Movement?

Mindful movement means slowing down and paying attention, and being intentional about how we move. It’s about taking time to feel what our bodies need, moving with purpose, and accepting ourselves exactly as we are in each moment, without criticism or pressure.

How does mindfulness help with EDS?

Mindfulness can help calm the nervous system and has been shown to help relieve chronic pain. It can also help reduce anxiety and fear of movement.

What are the simple mindful movements?

⁠⁠There are some simple things we can do to start introducing mindful movement, like sitting or lying, and observing our breath. Try gentle Pelvic rolls and shoulder rolls done slowly, noticing if the breath changes. Ankle circles or a massage with a spikey ball can also be great. Mindful movement can be applied to everything as you get used to it.

Jeannie Di Bon

Jeannie Di Bon is a movement therapist, educator and author specializing in hypermobility, Ehlers-Danlos Syndrome and chronic pain. She is the founder of The Zebra Club app and the creator of the Integral Movement Method.