Managing Ehlers-Danlos Syndrome: Movement, Stability, and Support
A physical therapist’s guide to thriving with hypermobility—not just surviving it
✅ 1. What EDS Is, and Why It’s Often Misunderstood
You're not imagining it—and you're not alone.
If you’ve ever been told that your pain, fatigue, or frequent injuries are “all in your head,” you’re not alone. For many people living with Ehlers-Danlos Syndrome (EDS), especially women, it can take years to get a proper diagnosis. That’s because EDS doesn’t always show up on standard imaging, and its symptoms are often dismissed as “just being flexible.”
But EDS is very real, and its effects are far-reaching. Over my career, I have treated a large number of EDS patients, and through many frustrating ups and downs, I have adapted my approach to how I treat this condition. This guide is designed to give you a better understanding of what’s happening in your body, what you can do to take control of your symptoms, and how exercise or physical therapy can play a central role in building stability, resilience, and quality of life.
We’ll cover:
What EDS is (and isn’t)
Why movement can both help and hurt
How to build stability safely
What to expect from exercise or physical therapy
And strategies for managing daily life with hypermobility
🔬 What Is Ehlers-Danlos Syndrome?
It’s not “just flexibility.” It’s connective tissue dysfunction.
EDS refers to a group of connective tissue disorders, most commonly linked to abnormal collagen—a key structural protein that gives tissues strength and elasticity. Think of collagen as scaffolding that holds the body together. In EDS, that scaffolding is loose, stretchy, or fragile.
The most common type seen in physical therapy is Hypermobile EDS (hEDS).
Common symptoms of hEDS:
Joint hypermobility (especially knees, elbows, fingers, shoulders)
Frequent subluxations or dislocations
Soft, stretchy skin that bruises easily
Chronic fatigue and widespread pain
Autonomic symptoms (e.g., dizziness, GI dysfunction, heart rate changes)
💡 Note: EDS ≠ just “being bendy.” Hypermobility affects tissue stability, not just range of motion.
🧠 Why Movement Can Be Both Helpful and Harmful
Motion is easy—stability is not.
This is the paradox of EDS: movement may look effortless, but the underlying control is fragile. With loose ligaments and poor proprioception (body awareness), joints lack the stability they need to stay centered. As a result, muscles and the nervous system have to overcompensate. This can be particularly difficult for patients, there are ways to stretch out and loosen the tight part of our bodies, but trying to ‘tighten’ the laxity in our bodies is a much different task.
“Decreased muscle strength is associated with activity limitations in JHS/hEDS patients. Joint proprioception has been found to influence this association and should be considered in the development of new treatment strategies.”
—Engelbert et al., 2017, p. 161
What this means:
“Stretch it out” can worsen instability.
Then we stretch our sore muscles it feels like we are doing something to address the problem. The soreness you feel as you pull on and stretch muscle knots does really do much to address the underlying reason the knots are there.
Muscle control, endurance and proprioception are more important than flexibility
This is the hard part. Most EDS patients know the push and pull dynamic of trying to strengthen or exercise and setbacks that can occur afterwards. However, improving muscle performance and resilence is the most important part to managing musculoskeletal pain long term.
Fatigue and joint pain are often the result of overuse, not underuse
Due to the inherent joint laxity, the lack of coordinated support leads to excessive strain.
The role of physical therapy/exercise is to:
Build deep muscular stability
Improve movement awareness
Reduce pain without overloading the system
🛠️ Core Rehab Strategies That Actually Help
Stability without fear. Strength without setbacks.
If you live with EDS, you’ve likely tried approaches that didn’t stick—or worse, caused flare-ups. The right rehab strategy is different: it’s low-risk, consistent, and customized to your needs.
“A number of cohort studies of JHS/hEDS report positive effects of strength, core stability, and endurance training in addition to education in pain management.”
—Engelbert et al., 2017, p. 164
Foundational strategies:
Low-load, high-frequency strength training
This means much lower weight or resistance and groupings of reps (sets) of 20 or more
Activation of deep stabilizers: Core, hips, shoulders, feet
Deep abdominals, hip rotators, scapular muscles, rotator cuff muscles, foot intrinsic
Isometric exercises to reduce joint pain and improve neuromuscular control
Isometric exercises are a light squeeze of a muscle and holding for 5-10 secs.
Benefit of isometrics is you can press or squeeze as hard as you choose
Joint protection strategies that emphasize alignment and body mechanics
Postural re-education, practicing movement with posture in mind. Moving through acceptable range instead of full range
Use of tools: Braces, kinesiology tape, and biofeedback—used strategically
Can help improve control and proprioception, used only in addition to exercises not instead of.
🔎 PT Tip: Know your limits. Watch for signs of overload like sharp pain, excessive fatigue, or prolonged soreness. Rehab should feel challenging—not punishing.
📈 Managing Flare-Ups and Daily Pain
Control symptoms with smart routines.
You can’t always prevent flare-ups, but you can be prepared. Daily management is a key part of long-term success.
Helpful self-management tools:
Symptom and activity log
Gentle aerobic movement (walking, recumbent bike, pool therapy)
Compression garments and heating pads
Mobility work focused on control, not extreme range
Pacing strategies to avoid boom-bust energy cycles
If you have comorbid conditions like POTS, MCAS, or IBS, your PT can help tailor movement and rehab to respect your body's needs.
🔎 PT Tip: Don’t be afraid or discouraged if you need to regress exercises if you are having a flare-up or more pain.
🏃 Movement Guidelines for Everyday Life
Everyday control matters as much as the gym.
You don’t need perfection—you need habits that protect and support your joints day to day.
Suggestions:
Postural alignment for sitting, standing, lifting to better distribute load and gravity
Avoid forced hyperextension in knees, elbows, and fingers during daily activities
Supportive sleep positions with pillows or wedges
Progressive, consistent graded exercise that don’t trigger flare-ups
Focus on joint-neutral positions, gradual resistance, and movements you can repeat without breakdown.
🤝 When to See a Specialist (and What to Ask For)
Build a care team that understands EDS.
PT is a cornerstone of care, but it’s not the whole picture. Some symptoms warrant medical investigation or co-management.
When to seek help:
Frequent dislocations/subluxations
POTS or syncope (fainting)
GI issues, rashes, or suspected mast cell activity
Persisting pain that doesn’t respond to rehab
Ask if your provider is familiar with EDS, or if they can refer you to those who are. Rheumatologists, cardiologists, neurologists, and GI specialists may all play a role.
The Ehlers-Danlos Society has a directory of healthcare professionals with experience in EDS.
🧾 Free Download: EDS-Friendly Strength & Stability Starter Plan
A safe starting point for movement and symptom tracking.
This free plan includes:
A 3-phase progressive strength program for joint-safe training
A daily movement routine to support circulation and proprioception
A symptom log and pacing worksheet
Final Thoughts: You’re Not Fragile, You’re Adaptive
Build the body you need, on your terms.
EDS isn’t a life sentence, it’s a different blueprint. With the right approach, your body can become more stable, more resilient, and more functional.
This isn’t about quick fixes. It’s about long-term progress.
Additional Resources:
Understanding Inflammation: How to Heal Smarter, Not Just Harder
Rehab Exercise Progression: A Patient’s Guide to Safely Advancing Your Recovery
References:
Buryk-Iggers S, Mittal N, Santa Mina D, et al. Exercise and Rehabilitation in People With Ehlers-Danlos Syndrome: A Systematic Review. Arch Rehabil Res Clin Transl. 2022;4(2):100189. Published 2022 Mar 4. doi:10.1016/j.arrct.2022.100189
Engelbert RHH, Juul-Kristensen B, Pacey V, et al. The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers-Danlos syndrome. Am J Med Genet C Semin Med Genet. 2017;175(1):158–167. doi:10.1002/ajmg.c.31545
The Ehlers-Danlos Society. Criteria and diagnostic pathway update. Published March 15, 2023. Accessed June 28, 2025. https://www.ehlers-danlos.com/criteria-and-diagnostic-pathway-update/
