Deconditioning in Hypermobility & EDS: It’s Not Just ‘Laziness’

Estimated reading time: 6 minutesHow often do we hear “you’re just deconditioned” – as if that is a personal failing or a lack of effort to maintain our fitness and activity? 

Deconditioning can be a blanket term used by healthcare providers to explain why patients with hypermobility or Ehlers-Danlos Syndrome find it challenging to maintain activity and are struggling with pain and fatigue.

I am often asked about this by my clients, so I wanted to explore deconditioning in more detail and explain that it is a complex issue and why it is not your fault.

What is Deconditioning?

Deconditioning has often been described as the physiologic changes resulting from disease and inactivity. It refers to the loss of muscle strength, endurance, and tone due to reduced physical activity.

There is very little research regarding hypermobility and deconditioning. What little research there is focuses on children and young people.

In the context of hypermobility and deconditioning, it is rarely just about being inactive. We are not deconditioned because we are not trying hard enough. This is really important.

Deconditioning can be the result of:

• Pain with movement
• Fear of movement
• Joint instability
• Autonomic disorders like POTS
• Fatigue and poor sleep
• Trauma
• Prolonged bed rest (1)
• Sedentary lifestyles like working on a computer all day (1)
• Menopause changes (1)
• Poor nutrition (2)
• Social isolation (2)

Our bodies are designed to move and need regular movement to stay healthy. When we don’t move enough, whether suddenly or over long periods, our muscles, bones, and cardiovascular systems can weaken and stop working properly. This lack of movement can lead to health problems (1).

This is also not just a physical phenomenon, as we are often led to believe.

One systematic review of multiple studies on hospitalization-associated deconditioning, particularly from prolonged bed rest, found that this can impact us cognitively as well as physically. This was related to a lack of social contact and cognitive stimulation (2).

Why People with Hypermobility Are More Prone to Deconditioning

You could see deconditioning as a response to survival and a heightened nervous system.

Many people with EDS, HSD, and chronic illness have experienced medical gaslighting, misdiagnosis, or being dismissed. During that time spent seeking help, individuals may have experienced repeated injuries, subluxations, flare-ups from exercise, increased fatigue, and a growing sense of grief and frustration.

It’s no surprise that the body could learn that movement is a threat. It could learn that movement causes pain and fatigue, leading to kinesiophobia, or fear and avoidance of movement.

Understandably, chronic pain could lead to activity avoidance and reduced physical activity. We know from research that many have had poor medical experiences and even suffered injuries from evaluations or treatments (3).

A study into adolescents found that deconditioning was reported as a potential underlying explanation for decreased functioning in chronic musculoskeletal pain (with and without hypermobility).

They proposed a fear-avoidance model in which musculoskeletal pain can be perceived as a threat, and pain-related fear can evolve, leading to avoidance behaviour. This could then lead to disuse, functional disability, and depression, and ultimately deconditioning (4)

If we add the commonly found co-morbities like POTs and ME/CFS, and MCAS into the picture, these conditions can make movement and exercise extremely challenging.

The Vicious Cycle of Deconditioning

It makes perfect sense that someone would reduce their activity in response to pain, fatigue or fear.  But this can create a vicious cycle because:

• Less movement = weaker muscles, poor control, and decreased proprioception.
• Weaker muscles = less joint support = more pain. The muscles need to support the joints.
• More pain = more activity avoidance.
• This reinforces the urge to rest more and move less.
• Add in fear of injury and nervous system sensitisation—people understandably retreat from movement.
• Over time, confidence about movement may diminish, and self-efficacy (or belief in your abilities) falls.  Movement becomes a source of anxiety.
• The body may begin to learn adapted movement patterns to avoid pain, a bit like if you hurt your foot, but you continued to limp after it was healed. We learn a movement pattern that isn’t using the body effectively and may further contribute to pain.
• Systems such as the musculoskeletal and cardiovascular systems appear to require constant reinforcement or conditioning to maintain integrity and function optimally (1).
• We also know that deconditioning (as opposed to physical “weakness”) can, in turn, contribute to more fatigue (5).

So what can we do about deconditioning when the contributing factors can be so complex? There is hope, and there is always somewhere to start.

Movement Doesn’t Need to Be Intense to Be Effective

This can be a tricky concept to grasp because we are so used to the no pain, no gain approach to exercise. We are bombarded with images of people in gyms with 6-packs and glowing skin, and believe this means health.

I believe these traditional fitness messages can actually worsen the issue for hypermobile individuals. I prefer a no-strain, no-pain approach to movement. With hypermobility, more is not always better.

I have found forcing the body and mind when it is not ready can trigger flares and setbacks, which is why I like to say “less is more.”

Through this gentle, hypermobile-safe approach that emphasizes ‘little and often’ movement, I was able to rehabilitate myself and have since helped thousands of clients do the same.

• Start with breathwork and relaxation. Bed or floor-based movement and even micro movements are effective to start working on conditioning.
• Focus on nervous system regulation and creating a sense of safety first. If your nervous system isn’t on board, any exercise could trigger a flare.
• Build capacity over time – at a pace that works for your individual needs. Let’s focus on consistency, not intensity.

This is the foundation of my Integral Movement Method (IMM).  It helps people rebuild trust in their body through safe, supported movement practices.

Nervous System Involvement: It’s Not Just Muscles

Deconditioning is a whole-body problem that goes beyond just losing physical strength. Along with exercise and physical therapy, we should also focus on supporting cognitive function (like memory and concentration) and overall brain and nervous system health to fully address it (2).

Our nervous system plays a key role. When we’re in pain for a long time, our pain system becomes overactive, making normal sensations feel more painful. At the same time, we lose our natural movement patterns. Because moving hurts more, we move less, which leads to further deconditioning.

To be clear this is not saying pain is in your head, it is a result of long-standing chronic pain. Like Dr. Leslie Russek says, we need to turn down the pain dial. You can read more about nociplastic here.

The IMM recognizes that living in ‘fight or flight’ mode is common in chronic illness, and helps regulate and calm the nervous system before asking the body to move.

How to Begin Reconditioning—Gently

If you’ve been resting and avoiding movement or have been fearful of exercise, you are not alone. This was not because you were weak-willed or lazy.

You were listening to your body. And perhaps you simply did not know how to get started on conditioning your body and mind. That in itself can be scary. Maybe you have tried different things only to find they caused a flare-up.

Reconditioning isn’t about pushing harder or ignoring the signals from your body. It is about gently guiding the body back to movement in a way that feels safe, not punishing.

Here are some tips to help you start:

• Start small: movement snacks, breathwork, or supported floor-based exercises.
• Celebrate consistency, not intensity. Little and often are key.
• Every small step counts – celebrate your wins.
• Rest and pacing are part of the process, not a failure.
• There’s no time frame to this.  It takes as long as your body needs to feel safe. Don’t pressure yourself by adding a time window.
• Enjoy the process of rebuilding to a more sustainable, stable foundation.
• I created The Zebra Club app to support people through this reconditioning gently and progressively.

A very important part of this is that we are all so different, and there is no prescriptive or one size fits all approach when it comes to exercise (6), especially for hypermobility and EDS.

When we are starting to get back into movement, it’s important to find the type and minimum level of exercise you need to support your body functioning without flaring (1). It is, as always, about the balance.

Reclaiming Movement on Your Terms

Deconditioning is not a personal failure – it is a consequence of an understandable response to pain, fear, and overwhelm. It could be a consequence of not finding the right solution or way to implement safe movement. Maybe you’ve been on your own trying to figure this out.

The path forward doesn’t need to be extreme or punishing. It can be gentle and slow and still be absolutely effective.

I always say that no matter where someone is today, there is always a way forward. We can build confidence, stability, and awareness – all without pushing through pain and fatigue.

FAQs

What is deconditioning in EDS?

Deconditioning refers to a decline in muscle strength, endurance, and overall physical condition due to reduced movement and activity. In hypermobility and EDS, this often happens due to pain, injury, fatigue, or fear of movement.

Why do people with EDS become deconditioned?

With EDS, many people have subluxations, dislocations, pain, and fatigue. These symptoms can make movement exhausting or feel unsafe, which naturally leads to reduced activity.Over time, the reduced activity can lead to muscle weakening and increased laxity, creating a cycle of deconditioning.

Is it safe for someone with hypermobility to exercise after deconditioning?

It is safe to exercise, but it must be the right approach. I recommend exercise that is gentle, self-paced, and focused on safety.Low-impact, floor or bed based micro moves are a great way to start.

Can deconditioning be reversed in people with hypermobility?

Deconditioning can definitely be reversed, it can but it may take time and patience. Even micro movements can start rebuilding essential muscle tone and improve joint stability, which could, in time, encourage more physical activity and ultimately reduce deconditioning.

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.