Pain in EDS & HSD: What’s Going On Beneath the Surface?
When most people hear about Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD), the first thing that often comes to mind is: “Oh, you’re just really flexible.”
But for those living with these conditions, it’s so much more than that.
The pain in EDS and HSD is not simply a side effect of hypermobility—it’s often complex, constant, and debilitating. It stems from a combination of structural tissue abnormalities, joint instability, soft tissue damage, muscle overcompensation, and nerve involvement.
Let’s break down what’s really happening under the surface.
Abnormal Collagen: The Foundation of Pain
Collagen is a protein that acts as the glue holding together your connective tissues—things like skin, ligaments, tendons, joints, and even organs.
In EDS and HSD, the collagen your body produces may be structurally different. This means that:
Tissues are more fragile and less elastic
Joints, skin, and other tissues don’t have the strength they should
Your body struggles to hold itself together, literally
This underlying connective tissue fragility sets the stage for chronic pain, frequent injury, and tissue damage.
Joint Instability & Soft Tissue Damage
People with hEDS or HSD often have joints that move beyond the normal range of motion—this is called joint hypermobility.
But more motion doesn’t always mean more freedom. It can mean more problems:
Dislocations or subluxations (partial dislocations)
Frequent sprains or strains
Cartilage wear and tear
Micro-injuries from everyday movement
Because connective tissue lacks firmness, even routine actions—like walking, reaching, or rolling over in bed—can cause microtrauma to joints and surrounding soft tissues.
This cycle of damage and poor repair contributes to ongoing, cumulative pain.
Muscle Overcompensation: Your Body Trying to Help (But Hurting You Instead)
When your ligaments can’t do their job, your muscles may try to step up as stabilizers—often in ways they weren’t designed for.
This constant over-recruitment leads to:
Chronic soreness and fatigue
Muscle spasms or knots
Localized or widespread pain
Cramping and weakness, even during daily activities
Many people with EDS or HSD describe muscle pain that feels deep, achy, or hard to pinpoint, especially after seemingly simple tasks. That’s your body working harder than it should to keep you upright and functional.
Nerve Involvement: When Things Go From Painful to Intolerable
Hypermobile joints can affect nerves that pass nearby—by stretching, compressing, or irritating them. This can result in:
Shooting or burning pain
Numbness, tingling, or pins and needles
Nerve hypersensitivity
Muscle weakness or referred pain
This isn’t just about nerve sensitivity. In EDS or HSD, the structural abnormalities themselves may be causing physical nerve stress.
And once nerves become chronically inflamed or damaged, pain becomes even more complex and difficult to treat.
The Reality: Pain in EDS/HSD Is Not “Just Discomfort”
It’s not about being sore after stretching too far. It’s not about overreacting to “normal” pain. It’s a sign of deep, structural dysfunction that’s impacting your joints, muscles, nerves, and entire connective tissue system.
The pain often shows up as:
Persistent muscle and joint pain
Pain that moves or shifts location
Pain without obvious injury
Delayed soreness after activity
Pain that interferes with sleep or daily functioning
And too often, people are dismissed, told it’s “just anxiety,” or accused of exaggerating—because EDS and HSD symptoms can be invisible from the outside.
Why Understanding This Matters
Understanding the mechanisms behind pain in EDS and HSD is crucial for several reasons:
It helps patients get validation, not dismissal
It guides more appropriate treatment and support strategies
It improves quality of life and prevents further injury
It drives clinical awareness and research for better outcomes
Pain in EDS and HSD isn’t mysterious—it’s multifactorial and rooted in physiology. From abnormal collagen and unstable joints to muscle strain and nerve involvement, these conditions demand more understanding, collaboration, and comprehensive care.
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PMID: 28186390; PMID: 25632331; PMID: 37046863; PMID: 34576312
Disclaimer: This blog post is for informational purposes only and shall not be construed as behavioral health or medical advice. It is not intended or implied to supplement or replace treatment, advice, and/or diagnosis from your own qualified healthcare provider.