Living with Ehlers‑Danlos Syndrome: How strength training helps me build stability & confidence

 

Jess's EDS testimonial

 

When most people think of flexibility, they imagine graceful yoga poses or easy stretching. But for me, hypermobility is anything but a party trick. I live with Ehlers-Danlos Syndrome (EDS), which affects every part of my daily life — from joint stability to chronic pain to how I move through the world. 

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Yet, my story isn’t defined by limitations. Through targeted physical therapy, strategic strength training, and a strong support network, I am actively building joint stability and reclaiming confidence in my body.

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What is Ehlers-Danlos Syndrome?

EDS is a rare, complex connective tissue disorder that affects collagen — the structural protein that holds together the connective tissue in your entire body. There is no cure for EDS. 

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EDS is actually an umbrella term for 13 inherited conditions characterized by loose joints, stretchy skin, and a higher risk of bruising and injury. 

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For some types of EDS, genetic testing, like a blood test or saliva test, can help find a change in a gene that causes the condition. But the most common subtype, Hypermobile EDS (hEDS), which accounts for roughly 90% of all diagnosed cases, currently has no known genetic marker. That means doctors must rely on detailed clinical exams.

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Because collagen is found almost everywhere in the body, EDS symptoms extend far beyond loose joints:

• Frequent subluxations (partial dislocations) or full dislocations

• Chronic, widespread musculoskeletal pain

• Severe physical and mental fatigue

• Delicately fragile skin

• Gastrointestinal issues

• Autonomic nervous system dysfunction, such as Postural Orthostatic Tachycardia Syndrome (POTS)

 

My shoulder, ribs, and even my tailbone can shift out of place during ordinary, everyday movements. It’s unpredictable, physically exhausting, and largely invisible to the outside world.

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How is EDS diagnosed?

Getting an EDS diagnosis often requires patience. Because awareness among providers is still growing, many patients navigate years of unexplained symptoms before getting clear answers. 

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Like me. I had no clue what it was. I endured years of dislocations and pain, not knowing what was wrong with me, until my chiropractor told me that he thought I should be tested for EDS.

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A thorough clinical evaluation typically includes:

1. Medical and family history: Looking for patterns of hypermobility or tissue fragility across generations.

2. Physical exam: Assessing joint range of motion, skin elasticity, and scarring.

3. Symptom review: Tracking ongoing pain, gastrointestinal troubles, or unexplained bruising.

 

To diagnose hEDS specifically, clinicians look for widespread joint hypermobility, evidence of systemic connective tissue issues, and rule out other similar conditions.

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Living with EDS symptoms: My daily reality

My primary challenges — painful rib subluxations, unstable shoulders, and tailbone displacement — are a classic reflection of how hEDS affects the musculoskeletal system:

• Instability vs. flexibility: Flexibility is the ability to stretch a muscle; instability is a joint's inability to stay safely anchored.

• Constant vigilance: Everyday movements can trigger a joint to slip out of alignment, making life unpredictable and physically draining.

• Persistent aching: For people with hEDS, chronic pain isn’t an occasional issue; it’s a daily reality.

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Is strength training safe with EDS?

A common myth is that people with hypermobile joints should avoid lifting weights or exercising altogether. In reality, exercise is medicine when it’s done correctly.

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Because connective tissue cannot hold joints securely, the surrounding muscles must step up and take over the stabilizing workload.

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1. Focused physical therapy

Physical therapy is the foundation of long-term stability for EDS. Effective programs focus on:

• Strengthening the exact muscles surrounding vulnerable joints.

• Improving the brain’s awareness of where joints are in space.

• Teaching movement patterns that protect joints from hyperextending.

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2. Smart strength training

To keep exercise safe and effective, clinical guidance recommends:

• Focusing on closed-chain movements (where the hand or foot is in a fixed position, like a squat or wall push-up).

• Working strictly within controlled ranges of motion.

• Following a slow, low-impact progression.

• Avoiding high-strain, contact, or sudden-impact activities.

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3. Comprehensive symptom management

Beyond exercise, a holistic care plan might include:

• Pain management: Over-the-counter support, topical gels, and addressing co-occurring conditions like POTS.

• Strategic bracing: Using splints, braces, or kinesiology tape to support joints during high-demand activities without letting muscles atrophy.

• Surgical caution: Because fragile tissue heals slowly, surgery is treated strictly as a last resort by connective tissue specialists.

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Reclaiming capability and confidence

My journey demonstrates what research and clinical practice consistently prove: building muscle builds stability.

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As surrounding muscles grow stronger, they act like internal braces, reducing painful dislocations, improving posture, and easing chronic discomfort. More importantly, every safe, supported repetition helps rebuild trust in my body, which often feels unpredictable.

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Living with EDS is a lifelong journey of adaptation, but it doesn't mean giving up on an active, full life. With the right care team, tailored movement, and patient-centered strategies, building stability, strength, and capability is entirely within reach.

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Photo credit: Jess on her trip to Oregon with Carrie in 2025.

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