Exercise for Ehlers-Danlos Syndrome (EDS): A Guide to Safe Movement

01 Mar Exercise for Ehlers-Danlos Syndrome (EDS): A Guide to Safe Movement

Living with Ehlers-Danlos Syndrome often means navigating a world of uncertainty. Are you tired of feeling like your body is fragile, where the fear of a dislocation or a flare-up dictates your every move? When you live with EDS and the constant joint instability that often accompanies it, the idea of exercise can feel intimidating, if not downright impossible. It’s a common story we hear, leaving many feeling stuck and without a clear direction from healthcare professionals.

But we are here to guide you on a different journey. This article is your supportive, evidence-based resource for moving safely and effectively. We believe that movement, when approached correctly, can be your greatest ally. Together, we will explore how a customised exercise plan can help you manage pain, reduce fatigue, and build the crucial stability your body needs to thrive. It’s time to find a clear path forward and empower yourself to feel more in control of your body and your life.

Understanding EDS: More Than Just ‘Flexible Joints’

Hearing the term Ehlers-Danlos Syndromes can feel overwhelming, but understanding what it means is the first step on a journey toward feeling and moving better. Put simply, Ehlers-Danlos syndromes (EDS) are a group of inherited conditions that affect your connective tissues. Think of connective tissue as the body’s ‘glue’-it provides strength and structure to everything from your skin and joints to your organs and blood vessels.

This ‘glue’ is primarily made of a protein called collagen. In individuals with EDS, there’s a fault in how the body produces or uses collagen, making this tissue weaker and more fragile than it should be. While there are several types, the most common is Hypermobile EDS (hEDS). It’s important to remember that while there isn’t a cure for EDS, there are highly effective ways to manage your symptoms, build resilience, and empower you to live a full, active life. That’s where we come in.

Common Symptoms Beyond Hypermobility

While joint hypermobility, or being ‘double-jointed’, is a hallmark of EDS, the condition is far more complex. The reality of living with EDS and its wide-ranging symptoms can be incredibly challenging, and we want you to know that what you’re experiencing is real. Weakened connective tissue can lead to a variety of issues, including:

• Chronic pain and fatigue: Your muscles often have to work much harder to compensate for lax ligaments, leading to widespread pain and exhaustion.
• Joint instability: Joints may partially dislocate (subluxate) or fully dislocate easily, causing pain and a loss of confidence in movement.
• Fragile or soft, stretchy skin: The skin may bruise easily or be slow to heal.

What is Hypermobility Spectrum Disorder (HSD)?

You may have many of the symptoms described above but not quite meet the strict diagnostic criteria for hEDS. In this case, you might be diagnosed with Hypermobility Spectrum Disorder (HSD). Please know this doesn’t make your experience any less valid. The symptoms of HSD can be just as significant. The great news is that the management principles and tailored exercise approaches for both EDS and HSD are very similar. Our focus is always on supporting you, not the label.

The EDS & Exercise Paradox: Why Movement Can Feel Risky

If you live with Ehlers-Danlos Syndrome (EDS) or hypermobility, you’ve likely been caught in a frustrating bind. You know that movement can trigger pain, subluxations, or dislocations, making you rightly cautious. Your body’s connective tissue provides less passive support, meaning uncontrolled or high-impact activities place immense stress on your joints. Yet, avoiding movement altogether only seems to make things worse. This is the central paradox: the very thing that feels risky is also essential for long-term stability and comfort.

The Cycle of Pain and Deconditioning

Does this sound familiar? You experience a flare-up or an injury, so you rest to recover. The pain subsides, but the fear of re-injury doesn’t. This fear leads to avoiding activities, causing your muscles to weaken from disuse-a process called deconditioning. As these muscles lose strength, they can no longer provide the active support your joints desperately need. This lack of support leads to more instability and, inevitably, more pain. It’s a vicious cycle that can leave you feeling trapped, but we want you to know it’s a common and understandable response.

Common Misconceptions About Exercise with EDS

Navigating exercise advice can be confusing, and well-meaning but misguided tips can do more harm than good. Let’s clear up two common myths:

• Myth: ‘You should avoid all exercise to protect your joints’. This is one of the most damaging misconceptions. While certain movements are risky, a complete lack of activity is the enemy of joint stability. The goal is not to stop moving, but to move smarter. In fact, research into structured, evidence-based approaches like The GoodHope Exercise and Rehabilitation (GEAR) Program shows that carefully planned exercise is fundamental to managing symptoms.
• Myth: ‘Stretching is good for my tight muscles’. For people with EDS and hypermobility, what feels like “tightness” is often protective tension-your muscles working overtime to hold an unstable joint in place. Stretching these already over-lengthened tissues can increase instability. The true goal is not to gain flexibility, but to build strength and control through your existing range of motion. Stability, not stretching, is the key to feeling better.

Understanding this paradox is the first step on your journey. The next is learning how to break the cycle with a safe, intelligent approach to building the strength your body needs to thrive.

Building Your ‘Stability Suitcase’: The Goal of EDS-Friendly Exercise

When you live with hypermobility, your ligaments-the passive ‘straps’ that hold your joints together-are often too lax. Think of your body as a suitcase; if the straps are loose, the contents will shift and become unstable. The goal of exercise for hypermobility and EDS is not to become a bodybuilder, but to strategically build strong, active muscles that act as a dynamic support system. We call this packing your ‘stability suitcase’-creating a robust muscular ‘corset’ that protects your joints, reduces pain, and improves function.

Strengthening from the Inside Out

True stability starts with the deep postural muscles that support your spine and joints. The focus here is on low-impact exercises that build strength without causing joint stress. A safe and effective starting point is often isometric exercise, which involves contracting a muscle without changing its length or moving the joint. Think of gently tensing your thigh muscle without bending your knee. We also prioritise closed-chain exercises (where your hand or foot is fixed against a surface, like a squat or a wall push-up) over open-chain exercises (like a leg extension machine). This approach provides better feedback to the joint, making it a safer and more effective strategy for those with EDS and joint laxity.

The Role of Proprioception and Balance

Have you ever felt clumsy or unsure of where your feet are? This relates to proprioception-your body’s internal GPS. It’s the sense that tells your brain where your limbs are in space without you having to look. In hypermobile individuals, this crucial feedback system can be ‘fuzzy’, leading to poor coordination, instability, and a higher risk of injury. The fantastic news is that we can retrain this sense. Specific balance and stability exercises help sharpen the communication between your joints and your brain. This approach aligns with the Ehlers-Danlos Society physical therapy guidelines, which underscore the importance of neuromuscular re-education to improve joint control and reduce subluxations.

By focusing on endurance in these stabilising muscles, you can also combat the profound fatigue that often accompanies hypermobility. Every exercise is a step towards building a body that feels less like an adversary and more like a strong, supportive partner on your journey to move better and feel better.

Your Guide to Safe and Effective Exercises for EDS

Navigating exercise with Ehlers-Danlos Syndrome (EDS) can feel daunting, but it’s a crucial part of managing your symptoms and building resilience. The key to success isn’t about pushing your limits; it’s about a mindful, gradual approach. We always guide our clients with a simple but powerful mantra: ‘start low and go slow.’

Consistency will always be more valuable than intensity on this journey. Learning to listen to your body-recognising the difference between muscle fatigue and joint pain-is your most important skill. Pushing through pain is counterproductive and can lead to setbacks. This is why partnering with a professional, like an Exercise Physiologist who understands the complexities of EDS and hypermobility, is so vital for creating a safe, effective plan tailored just for you.

EDS-Safe Activities to Explore

Focusing on low-impact, controlled movements helps build strength without putting undue stress on your joints. Here are some excellent starting points to discuss with your health professional:

• Hydrotherapy: The buoyancy of water supports your body, reducing the load on your joints while its gentle resistance helps build muscle tone safely and effectively.
• Clinical Pilates: Led by a trained professional, Clinical Pilates is fantastic for developing deep core stability, improving posture, and enhancing body awareness through precise, controlled exercises.
• Isometric and Bodyweight Strengthening: These exercises build strength without moving the joint through a full range of motion. Think gentle glute bridges, wall sits, or bird-dog poses.
• Gentle Cardio: Activities like walking on even, predictable surfaces or using a stationary bike can improve your cardiovascular health without the jarring impact of other exercises.

Movements to Approach with Caution

Just as important as knowing what to do is knowing what to avoid. Certain activities can increase the risk of injury for individuals with hypermobile joints. We recommend approaching the following with caution:

• High-Impact Activities: Exercises involving running, jumping, or sudden changes in direction can place excessive force on already vulnerable joints.
• Contact Sports: Sports with a high risk of falls, collisions, or unpredictable movements can easily lead to dislocations or other serious injuries.
• Over-Stretching: While flexibility is often seen as a positive, passive stretching that pushes a joint beyond its stable range can increase instability and risk of subluxation.

Every body is unique, and what works for one person may not work for another. Building a safe and sustainable exercise routine is a journey of discovery. Feeling unsure where to begin or how to progress? Let our expert team guide you on a safe exercise journey. We are here to empower you with a plan that helps you move better and feel better, for good.

How an Exercise Physiologist Becomes Your Partner in EDS Management

Navigating exercise with a chronic condition can feel overwhelming. An Accredited Exercise Physiologist (AEP) is a university-qualified health professional who specialises in designing and delivering safe, effective exercise programs for people with complex health needs. Unlike a personal trainer, an AEP has in-depth clinical knowledge of conditions like Ehlers-Danlos Syndrome. While a physiotherapist often focuses on diagnosing and treating acute pain, an AEP’s role is to partner with you for the long term, using movement as a tool to manage your symptoms, build resilience, and improve your quality of life.

At MoveMed, we believe in a compassionate, evidence-based approach. We understand the unique challenges that come with hypermobility, and our goal is to empower you with a plan that builds strength without causing flare-ups.

What to Expect in Your First Session

Your initial consultation is a comprehensive, collaborative process designed to build a foundation of trust and understanding. We don’t just look at your diagnosis; we listen to your story. You can expect:

• A thorough discussion about your health history, symptoms, daily challenges, and most importantly, your goals.
• Gentle movement assessments to understand your current capacity and identify safe starting points.
• Clear education on how to move your body safely, empowering you with knowledge from day one.
• The creation of a tailored, manageable starting plan that you feel confident beginning.

Long-Term Support for Your Journey

Managing EDS is a marathon, not a sprint, and our goal is to be your trusted partner every step of the way. As you build strength, your program will evolve with you. We adapt your exercises to ensure you are always progressing safely toward your bigger life goals-whether that’s playing with your kids or simply moving with less pain. For many clients with EDS and related conditions, services may be accessible through funding pathways like the NDIS in Australia. We are here to guide you on a sustainable journey to feeling stronger and more in control.

Ready to feel stronger and more in control? Book a consultation at our Templestowe clinic.

Empower Your Body: Your Next Steps with EDS

Living with Ehlers-Danlos Syndrome doesn’t mean you have to be afraid of movement. As we’ve explored, the key isn’t avoiding activity, but embracing a new, intelligent approach. It’s about building your ‘stability suitcase’ with safe, targeted exercises that support your joints, not strain them. Understanding the unique challenges of eds and exercise is the first, most powerful step towards taking back control and redefining your relationship with your body.

You don’t have to navigate this journey alone. At MoveMed, our team of Accredited Exercise Physiologists specialises in hypermobility and EDS. We act as your partners, creating truly personalised, evidence-based management plans that empower you to build strength and resilience. As a dedicated NDIS registered provider, we are committed to providing accessible, supportive care that helps you achieve your goals.

Start your journey to a stronger, more stable you. Book an appointment with our EDS-aware team.

Frequently Asked Questions About Exercise for EDS & Hypermobility

Can you build muscle with Ehlers-Danlos Syndrome?

Absolutely. Building muscle is not only possible but highly recommended for managing EDS. Strong muscles act as a natural brace, providing crucial support to hypermobile joints and reducing the risk of dislocations and subluxations. The key is a carefully tailored approach, focusing on slow, controlled movements and proper form to avoid injury. With a customised strength program, you can safely increase muscle mass, improve stability, and feel more confident in your body’s capabilities.

What exercise should you avoid if you have EDS or hypermobility?

It’s best to avoid high-impact activities like running on hard surfaces, plyometrics (jumping), and contact sports, which can strain vulnerable joints. Be mindful of overstretching or “end-range” movements often found in certain yoga poses, as this can worsen joint instability. The goal is to build strength within a safe range of motion, not to push your flexibility. A qualified professional can help you modify activities to ensure they are safe and beneficial for you.

Is walking good for managing EDS symptoms?

Yes, walking is an excellent low-impact cardiovascular exercise for managing EDS. It helps maintain fitness, improves circulation, and can boost your mood without placing excessive stress on your joints. To make it most effective, focus on wearing supportive footwear, maintaining good posture, and starting with shorter distances. Listen to your body and gradually increase your duration as your strength and endurance improve. It’s a fantastic foundation for a more comprehensive exercise plan.

How can I manage chronic pain from EDS without medication?

Managing chronic pain is a journey, and there are many effective non-medication strategies. A tailored exercise program focusing on gentle strengthening and stability is fundamental. Techniques like pacing your activities to avoid flare-ups, using heat or cold packs for localised relief, and practising mindfulness can also be incredibly helpful. Working with a health professional helps you build a holistic toolkit of strategies, empowering you to manage pain and improve your quality of life on your own terms.

Is hydrotherapy a good choice for someone with EDS?

Hydrotherapy is an outstanding choice for individuals with EDS. The buoyancy of the water provides a supportive, low-gravity environment that significantly reduces stress on your joints, allowing you to move with greater freedom and less pain. The water also offers gentle resistance, which is perfect for building strength safely. It’s an ideal setting to improve muscle tone and body awareness in a controlled way, making it a cornerstone of many successful eds and hypermobility management plans.

What’s the difference between an Exercise Physiologist and a Physiotherapist for EDS?

Think of it as a team approach. A Physiotherapist often focuses on diagnosing issues, managing acute injuries or flare-ups, and providing hands-on treatment. An Accredited Exercise Physiologist (AEP) specialises in creating long-term, customised exercise programs to manage chronic conditions like EDS. They guide you in building strength, stability, and function to improve your daily life and prevent future problems. Both play a vital, collaborative role in your healthcare journey.

Can I use NDIS funding for exercise physiology to help with my EDS?

Yes, you can absolutely use your NDIS funding for Exercise Physiology services to help manage your eds and related symptoms in Australia. If improving your physical function, mobility, or community participation are part of your NDIS goals, these services can often be funded under ‘Improved Health and Wellbeing’ or ‘Improved Daily Living’. We can work with you and your support coordinator to ensure our tailored exercise programs align perfectly with your NDIS plan goals.