EDS - Hypermobility Pain: The Overachiever’s Guide to Standing Still

People think Ehlers–Danlos Syndrome is just “being bendy.” Ha, I wish!

Fact: Your joints can’t report their position when your collagen feels like overcooked spaghetti. So the body compensates: muscles tighten all at once, the brain overuses energy monitoring movement, and the wrong tissues get loaded. Result: fatigue, pain, and flare-ups… from just existing.

Fun fact: did you know proprioceptors are specialised nerve endings detecting stretch and tension in your body, telling the brain where limbs are and how they move? They are found in muscles, tendons, and joint capsules/ligaments.

What goes wrong in EDS:

Muscle spindles detect unexpected stretch → spinal reflex triggers co-contraction → brain recruits extra muscles to brace. Stability improves… and energy use skyrockets.

➡️Loose connective tissue → fuzzy or delayed proprioceptor signals.

➡️Joints feel unanchored → brain guesses poorly where limbs are.

➡️Brain ramps up monitoring, nervous system tightens muscles, and relies on vision and touch.

EDS exercises aren’t optional; they’re the reminder system your joints forgot to install.

Funny and true EDS sayings:

- My joints and my brain are in a long-distance relationship.

- EDS proprioception: imagine driving with a GPS that updates every three blocks.

- My muscles aren’t tight because I’m fit; they’re tight because they’re terrified.

- Standing still is my cardio.

- My brain says “move left” and my body says “define left.”

- Every step is a surprise party for my nervous system.

- I can trip over nothing. Literally. Nothing.

- “Relax your muscles.” Yeah, right… they don’t know how.

- In EDS, proprioceptors don’t send signals - they send riddles.