My Journey: EDS, Clavicle Chaos, and Chiari Malformation.

By Antonia@UnremarkableMe, Professional Human Pretzel and Part-Time Chaos Coordinator.

If my life were a symphony, my connective tissue would be playing out of tune while the conductor stares blankly at the sheet music labeled “EDS.” Let’s dive into the joyful chaos that is living with Ehlers-Danlos Syndrome (EDS), clavicle instability, and—because why not—Chiari malformation. Spoiler alert: it’s exactly as delightful as it sounds.

The Musculoskeletal System: A Connective Tissue Circus

For most people, connective tissue is the underappreciated background dancer—keeping everything stable and upright while nobody gives it a second thought. For me? Mine’s the office slacker who left for a smoke break in 2012 and never came back. And now the whole building’s on fire.

EDS messes with collagen, the protein that’s supposed to give your connective tissue strength and flexibility. In my case, it’s more like trying to build a suspension bridge out of cooked spaghetti. Structurally unsound. A bit wobbly. Weirdly impressive.

The results? Oh, just a few casual quirks:

• Hypermobile joints: My limbs do party tricks they absolutely shouldn’t. My shoulder has exited the chat mid-stretch more times than I can count.

• Muscles doing overtime: Because my ligaments have the work ethic of a toddler on a sugar crash, my muscles are constantly overcompensating like an intern trying to impress.

• Chronic pain: Back, neck, shoulders—you name it. My nervous system is basically a 24/7 group chat, and nobody's muting it.

More on EDS from the Ehlers-Danlos Society

My Spine’s Diva Moment: Scoliosis Shenanigans

Ah yes, scoliosis. The elegant curve of the spine—except it’s not meant to be elegant, it’s meant to be straight. But mine took one look at the rulebook and went, “Nah, I’m going rogue.”

Real-life consequences of a wiggly spine:

• Posture? Never met her: One side of my back works overtime; the other’s on a permanent coffee break.

• Persistent pain: No position is the right position. Even “lying down flat” becomes a negotiation.

• Organ compression risk: Thankfully I’m not there yet, but the curve has ambitions.

National Scoliosis Foundation - What You Should Know

Clavicle Instability: The Shoulder’s Drama Queen

The clavicle, or collarbone, is supposed to be the stable bridge connecting your sternum to your shoulder. But in my body, it’s a rebellious roommate that keeps packing its bags.

• Subluxations and dislocations: Yep, it just slips out like it’s trying to sneak off for a weekend getaway.

• Shoulder pain for days: This instability turns every lift, push, or reach into a potential war crime.

• Range of motion? Debatable: That chocolate bar on the top shelf becomes a calculated risk.

  
  

Chiari Malformation: My Brainstem’s Awkward Roommate

Now, just when you think the party’s over—bam! Chiari malformation enters stage left. This condition causes part of the brain to herniate into the spinal canal, compressing the brainstem and disrupting cerebrospinal fluid (CSF) flow. Cute, right?

When you throw Chiari into the mix with EDS and scoliosis, it’s like inviting chaos to dinner and then letting it host.

Together, they create this dream team:

• Increased brainstem pressure: Because of spinal instability, my headaches are less “mild discomfort” and more “your brain is rebelling.”

• CSF flow disruption: Screws with balance, cognition, and basically anything involving not being dizzy.

• Neurological roulette: Tingling, numbness, weakness—spin the wheel and see which limb freaks out today.

More on Chiari Malformation - NIH

Real Talk: Living in a House That’s Always Under Renovation

Living with EDS, scoliosis, clavicle instability, and Chiari is like trying to build IKEA furniture without instructions, while your dog is hiding the screws.

Every day is a Q&A session with my own body: Q: Can we do this task without dislocating something?A: Lol. Try again later.

• Pain is a full-time gig: It’s there when I wake up, it’s there when I nap, and it definitely shows up for Netflix marathons.

• Fatigue is the manager: When your body burns 1000 calories just existing, there’s not a lot left in the tank.

• Mobility? It’s complicated: Prolonged standing? Pain. Prolonged sitting? Pain. Doing nothing? Also pain.

  
  

My Management Toolkit (a.k.a. Surviving the Madness)

So, how do I keep this crumbling house from collapsing entirely? Here’s my tried-and-tested survival guide:

• Physical therapy: Carefully strengthening the muscles to play nice with my rebellious joints.

• Braces and supports: Soft braces, clavicle straps, and any tool that helps me stay inside my skeleton.

• Pacing: Listening to my body’s early warnings instead of pushing through to full meltdown.

• Pain relief: Heat, TENS units, and strategic avoidance of adult responsibilities.

• Humor: Because if you don’t laugh when you accidentally reverse your wheelchair into a display of Gin Gins, you will cry. (They were on sale. I regret nothing.)

  
  

Embracing the Glorious Chaos

Living with this cocktail of conditions isn’t glamorous. It’s not brave or tragic or “inspiring”—it’s just life. Messy, exhausting, weirdly funny life. My body is high-maintenance and unpredictable, but it’s mine. And I’ve learned to navigate it with resilience, sarcasm, and the occasional emergency chocolate stash.

If you’re out there nodding along, welcome to the beautifully chaotic club. We may be bendy, tired, and neurologically spicy—but we’ve got snacks, dark humor, and each other.

🖤