Why Movement Feels So Hard with EDS (And What You Can Do About It)
If you live with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD), you already know this: movement isn’t easy. Even simple tasks—hanging out the washing, walking down stairs, getting out of bed—can feel like they drain every last bit of your energy.
It’s not just in your head, and you’re not lazy. There are real physiological reasons movement feels harder for people with EDS/HSD—and there are also supportive, research-backed ways to make it easier.
In this article, we’ll explore why movement can feel so overwhelming and painful, and what you can do to make it safer, more manageable, and more empowering.
Why Is Movement So Difficult with EDS?
EDS and HSD affect the connective tissue that supports your joints, skin, blood vessels, and organs. When your connective tissue doesn’t provide the usual stability, your joints can move beyond their normal range—leading to pain, micro-injuries, and a need for muscles to work overtime to keep you stable.
Here’s why that makes movement so tricky:
Joint instability can leave you feeling wobbly, uncoordinated, or vulnerable during movement.
Poor proprioception (body awareness) makes it harder to sense where your joints are in space, increasing your risk of injury.
Chronic muscle tension or guarding often develops as your body attempts to compensate, which can lead to chronic pain, fatigue, and stiffness.
Excessive joint range can place abnormal stress on other tissues like nerves, blood vessels, and tendons.
Deconditioning from years of avoiding pain can make even gentle activity feel exhausting.
According to research, fatigue and pain are two of the most disabling symptoms reported by people with EDS and HSD. One study found that individuals with EDS experience significantly higher levels of fatigue and reduced physical activity compared to matched healthy controls (Rombaut et al., 2014). Another reported that pain and fatigue negatively affect function and quality of life for the majority of patients (Castori et al., 2017).
Movement Can Still Help—When It’s Done Right
Now for the good news: movement can be incredibly beneficial for people with EDS and HSD—when introduced appropriately.
Research consistently shows that a gentle, progressive, and individualised approach to movement can:
Improve joint stability
Enhance proprioception
Reduce pain intensity
Improve joint mechanics
Increase confidence and function
One study found that individuals with hypermobility who participated in a tailored movement therapy program showed improvements in both strength and balance. Another study highlighted that exercise-based therapy significantly improved proprioception and reduced pain in people with HSD.
Graded movement, which gradually increases activity based on what your body can handle, is particularly effective. It helps reduce fear of movement and rebuilds trust in your body—without triggering flare-ups.
So… Where Do You Start?
It’s completely normal to feel hesitant about exercise—especially if previous attempts have led to pain, injury, or feeling dismissed by health professionals.
Here’s how we recommend beginning, based on both research and real-world client experience:
1. Work With Someone Who Understands EDS
A practitioner experienced in EDS/HSD can create a plan tailored to your needs—not just physically, but emotionally as well.
2. Before You Move
Before beginning any movement program, it’s essential to understand the condition and how to work with your body. That includes:
Educational tools to understand pacing, warning signs, and safe movement
Calming strategies for the nervous system to reduce stress and reactivity
A plan to avoid the boom-bust cycle of overexertion and prolonged rest
If these aren't in place, you may find yourself stuck in a loop of increasing pain and fatigue, unable to progress.
3. Start Small—Really Small
Think of movement as a dial, not a switch. That might mean starting with 5 minutes of breath-focused muscle activations while lying on your bed. Starting once or twice a day, then slowly building from there. When you begin, it should feel like you’re not doing enough.
4. Focus on Stability, Not Intensity
Exercises that build joint control and body awareness—like isometric holds, gentle core work, postural exercises, or balance tasks—are far more valuable than high-repetition or high-impact routines.
5. Use External Feedback
Tools like mirrors, light resistance bands, or hands-on guidance can improve proprioception and reduce compensatory movement. One study showed that proprioceptive training tailored for people with hypermobility led to significant improvements in joint position sense and reduced pain (Germain et al., 2019). This kind of work is gentle, sustainable, and empowering—exactly what your body needs.
“I Was Scared to Move…” — What Clients Say
Many of my clients begin their journey with fear. Fear of making things worse. Fear of not being believed. Fear of another flare-up they can’t control.
But after a few weeks of tailored, low-pressure support, here’s what we often hear:
“For the first time, I feel like I have a plan.”
“I’m starting to trust my body again.”
“I’m not just surviving anymore—I’m finding ways to live again.”
It’s not about smashing goals or pushing harder. It’s about feeling safer, more stable, and more in control of your day-to-day.
Where to From Here?
If you’re feeling hesitant, that’s okay. Just know you’re not alone—and there are ways forward that don’t involve pushing through or pretending you’re fine.
You might like to start with my free eBook: Symptom Support Guide for EDS & HSD It’s packed with gentle strategies, real-talk advice, and tools you can start using right away.
And if you're ready to chat one-on-one, our Discovery Sessions are free and relaxed—no pressure, just a chat to answer any questions and see how we could work together.
