EDS, Hypermobility, and Breathing

Estimated reading time: 7 minutesIf you have EDS or HSD, have you ever experienced that feeling of not being able to take a deep breath or feeling breathless and anxious about breathing?

Maybe you feel your chest is quite tight and your shoulders are tense. Sometimes, people also report finding it difficult to take a full exhale – like the breath gets stuck almost and excess force is needed to force the breath out.

For people with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD), this experience is actually quite common. It is not just down to anxiety (it’s NOT all in your head!!) or poor posture – although they will be impacting our breath.

There is also a deeper connection between breathing pattern disorders and hypermobility. It makes sense too – our connective tissue is everywhere in our body. It could also impact our lungs, our airways, our nasal cavities, and our diaphragm.

In my way of working through the Integral Movement Method (IMM), breath is very much a foundational element. It is the first principle of the IMM because I found through my own practice and then working with thousands of clients, that if the breath was not integrated into my movement in a gentle, relaxed way, I have more restrictions, more pain, and more anxiety about movement.

The breath is not just a tool for relaxation, but it offers us a gateway to nervous system regulation, stability, and pain relief.

For hypermobile individuals, who often live in a heightened state of alert or dysregulation, learning to breathe well can help create a powerful shift – both physically and emotionally.

This blog will explore breathing issues in EDS and HSD and offer some practical solutions.

EDS and Breathing Problems

Breathing problems are commonly reported in hEDS and EDS (as well as other subtypes of EDS). These are something that should be discussed with your medical team.

hEDS and HSD have been associated with (1):

• Shortness of breath (Dyspnea)
• Reduced inspiratory (inhale) muscle strength
• Dysphonia/hoarseness, and weak voice
• Throat pain
• Breathing difficulties
• Airway collapse
• Chest wall deformity
• Cough (though this could also be related to GERD – Gastroesophageal reflux disease which is also common in EDS)
• Sleep apnea
• Nocturnal cough or wheeze
• Asthmatic symptoms

When the breathing pattern is altered for a long time, it can lead to dysfunctional breathing like dyspnea (shortness of breath) (2) In fact, shortness of breath was one of the most often mentioned issues in the literature.

One study found shortness of breath with exertion is a common complaint (reported by up to 50% with hEDS) (3). They observed decreased strength of the inspiratory (inhale) muscles when they assessed people with hEDS (n=104). They reported a 6-week outpatient inspiratory muscle training treatment improved diaphragm strength (but didn’t fully improve inspiratory strength).

Breathing issues can also be associated with commonly co-occurring syndromes like dysautonomia, which is associated with hyperventilation, apnea, breath holding, and rapid shallow breathing. Mast Cell Activation Syndrome (MCAS) can also be related to breathing problems(4).

Rib subluxations are another common occurrence we face with hEDS/HSD that may contribute to discomfort with breathing (5). I have found that releasing thoracic tension and working on breathing can reduce the occurrence of rib subluxations.

Proprioception and the breath

We know that proprioception – or the ability to sense where we are in space – is impaired in EDS. A recent study found this impacts the breath as well (6). Researchers found in a small group of people with hEDS, compared to controls, they were less precise at perceiving their lung volume – particularly at moderate volumes (they did a different range of volumes).

The researchers also found that people with hEDS breathed differently during thinking tasks, changing both how fast and how deeply they breathed. They believe this happens due to the lack of proprioception because this affects how the nervous system controls breathing (6).

Breathing through the nose

Ideally, we want to breathe through the nose. Mouth breathing can be quite common and problematic for EDS patients.

Mouth breathing can lead to poor tongue posture, where the tongue gets pulled down and back instead of resting on the roof of the mouth. It can also encourage shallow, upper chest breathing and overuse of muscles like the scalenes (7).

Additionally, it can cause neck and jaw strain because the head gets pulled forward and activates the muscles in the neck and jaw to stay open and draw in the air. Not to mention bad breath, dental decay, gum disease, and other dental issues (7).

For some, breathing through the nose and having the tongue rest at the roof of the mouth (all the time!) may be quite difficult. Working with an orofacial myofunctional therapist can help with this. Nose breathing can improve the action of the diaphragm (7)!

Breath and Movement

Breath is movement and movement is breath.

With every breath, we are already moving. The body is never static or motionless. Moving away from rigid or forced breathing techniques is essential for hypermobility. The concept of ‘core stability’ where we may force a hold of the abdominal muscles and pelvic floor can interfere with the natural workings of the breath, the respiratory diaphragm, and the “pelvic diaphragm” or pelvic floor muscles.

Learning to soften tension in the accessory breathing muscles like the neck and shoulders, and creating space within to allow the expansion of the body with the breath, can be the first step to moving with greater ease and awareness.

The breath allows us to connect with ourselves again. This is especially important for people with hEDS / HSD – we often feel disconnected, and disjointed and have experienced the body as something of pain and frustration.

Through breath, we can begin to be gentle with ourselves and offer some self-compassion.

The benefits of breathing exercises for EDS

Breathing exercises can help with pain. A study on women with Fibromyalgia found 12 weeks of breathing exercises helped reduce pain thresholds and tender points. This was a pretty intense program with 30-minute sessions daily (8).

In my clinical experience of over 16 years, I have observed many benefits from breathwork with EDS/HSD clients.

These include reduced pain, the ability to let go of guarding patterns, recognizing guarding patterns that may be inhibiting movements, increased relaxation and regulation of the nervous system, improved body awareness and proprioception, and improved sleep quality, to name just a few.

What if breathing exercises make me feel worse?

There could be several reasons why breathing exercises make some people feel worse. If this is your experience, you are definitely not alone! Some reasons I have encountered include:

• If we are used to shallow breathing, taking fuller (but gentle) breaths can be challenging. We start to change our physiology, and initially this can make us feel dizzy or lightheaded. Go gentle – breath is powerful.
• Joint instability around the ribcage and spine can make it harder and even painful to breathe. This is why learning safe efficient breathing techniques is really important. We don’t want to be forcing inhales or exhales as they could potentially increase pain. Adopting a gentle, nurturing approach to breath can be highly beneficial for hypermobility.
• Muscle weaknesses around the torso and deep stabilizing muscles may mean the body takes the path of least resistance and recruits accessory muscles like the neck or shoulders. This could cause pain in the neck and shoulders. We can learn to breathe without recruiting these muscles.
• Autonomic dysfunction may make it difficult. If you have POTS, this can cause breathlessness, dizziness, or air hunger (9). Air hunger is when you feel like you need to gasp or gulp in the air.
  • I used to really struggle with air hunger and I was, in fact, overbreathing. I was taking in too much oxygen, causing chemical imbalances in my system, and I felt I needed to take in more air. This is where respiratory physio can be really helpful.
• Chronic pain and trauma can lead the nervous system to stay in a heightened state, where breath becomes and stays shallow and rapid. We are stuck in fight or flight. In this case, we need to start with regulation to help change that pattern.
• Neurodiversity and/or trauma may impact this. Many of my neurodivergent clients report that focusing internally on their breath can make them feel more anxious and stressed. We know there can be differences in interoception or the perception of internal signals. We can be creative and adapt. I often use external stimuli for breathing with my neurodivergent clients, or clients with trauma.

A note on dysautonomia: One research group hypothesized that dysautonomia in hEDS can be characterized by both sympathetic (fight or flight) excess and parasympathetic (rest and digest) excess (10). We also know that slow, deep breathing exercises stimulate the vagus nerve, which can influence parasympathetic activity (4). Perhaps if you are in a state of parasympathetic excess, deep breathing may not feel good.

Tips for Practicing Breathing

Most importantly, we go low and slow.

Breath is very powerful. It is also the only part of the autonomic system we can control and change. We can use it to our advantage in times of stress, but also as a pain reliever and ability to release long-held tensions in our tissues.

• I recommend starting breathwork supine – lying on your back – so that your body is fully supported and the tissues can start to relent a little.
  • Make sure you have pillows and blankets as needed. Then without judgment, simply observe the breath.  Notice where the inhale goes, notice where the exhale goes.  Don’t try to change it.  Just be present with it.
• I’ve moved away from pure diaphragmatic breathing. I recently did a video on why this is challenging for EDS patients (see below). Instead, I prefer to focus on whole body breath, feeling the whole torso expand with the inhale and soften on the exhale.
• Breath with micro-movements – I love to add small, gentle moves with breath. A pelvic roll is a great way to start. Allow the inhale to tip the pelvis forward so that your lower back is slightly arched, and the exhale to tip the pelvis back so that your back is flat. It is crucial not to try and force this. Can you let the breath do the movement for you?
• Down-regulating the nervous system – exhale is where the magic happens in my opinion. The longer the exhale, the calmer the nervous system. If there are pauses in between your inhales and exhales, even better. The longer the pause, the greater the calm. This helps shift us into parasympathetic rest and digest state and away from sympathetic fight or flight.

FAQ

Can hypermobility cause breathing problems?

Yes, hypermobility can contribute to breathing problems for a number of reasons. Shortness of breath or dyspnea is the most commonly reported breathing problem. Our connective tissue is everywhere in our body, including our lungs, diaphragm, and airways.

Why is breath important for EDS?

Breath is a portal into how someone is feeling, and it is a pathway for communicating with the nervous system. It can help support the fascia and healthy movement patterns. For this reason, every single session I do starts with breath.

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.