Anesthesia and Ehlers-Danlos Syndrome: Why You're Not Making It Up (Even If Your Dentist Thinks You Are)
- Antonia Kenny
- Apr 9
- 5 min read
Picture this: you're lying on a surgical table or wedged into a dentist’s chair, smiling nervously (because British manners don’t let us do anything else), and someone assures you the numbing agent is in and you “won’t feel a thing.”
Cut to: you definitely feel a thing. In fact, you feel everything.
And then, of course, comes the classic follow-up: “That’s strange, you shouldn’t be feeling anything.”
Well, guess what? If you’ve got Ehlers-Danlos Syndrome (EDS), that might be strange to them—but to us? That’s just Tuesday.
Wait, Why Doesn’t Anesthesia Work for Us?
To understand this, we need to talk about collagen. No, not the kind advertised in overpriced moisturisers or “beauty-enhancing” supplements that promise eternal youth. We’re talking about the real stuff—the structural protein that holds your entire body together like scaffolding made of jelly.
In EDS, that collagen is faulty. It’s like your body’s building blocks were held together with mood swings and broken elastic bands. This impacts everything from how your joints move to how your skin stretches—and, as it turns out, how you respond to medication. Anesthetic agents rely on predictable pathways and structures in your body to work properly. If the pathways are warped, porous, or built like a bouncy castle? Surprise! The drugs may not go where they’re supposed to—or stick around long enough to do anything useful.
So, the key issues for people with EDS and anesthesia include:
Local anesthesia wearing off too quickly or not working at all.
Increased resistance to general anesthetics, requiring higher or adjusted doses.
Greater risk of joint dislocations or injuries during surgery due to tissue fragility.
Unpredictable blood pressure and heart rate responses due to autonomic dysfunction.
This isn’t a fringe experience or anecdotal whisper on the internet. It’s a well-documented, researched phenomenon that medical professionals really should be aware of. And yet, here we are—still being treated like we’re making a fuss over nothing. Or worse, being gaslit into thinking our bodies just need to “relax.”
But There's Research, Right?
Yes. Real, actual, peer-reviewed research. In a 2019 study published in the Journal of Anesthesia, researchers found that 88% of people with EDS reported that local anesthetics didn’t work effectively during dental procedures. For comparison, only 33% of people without EDS experienced similar problems. That’s not a minor discrepancy. That’s a statistical neon sign flashing: “Please take this seriously.”
There are also comprehensive guidelines, like those published by Orphan Anesthesia, detailing exactly how anesthesia should be handled in patients with EDS. They highlight altered drug absorption, metabolic differences, autonomic instability (like in POTS), and musculoskeletal complications as major risk factors that require special planning.
Let’s Break This Down (Since Our Bodies Already Did)
1. The Case of the Vanishing Anesthetic
Local anesthetic resistance is one of the most common EDS complaints. For some, it kicks in but wears off halfway through a procedure—meaning you’re halfway numb and fully panicking. For others, it barely kicks in at all, leaving you in the bizarre position of being told to “relax” while actively clenching through searing pain. And yet, disbelief is often the first response from professionals.
Here’s the thing: collagen is a major component of the extracellular matrix—the tissue that surrounds nerve cells. If that matrix is too porous, leaky, or structurally abnormal, it messes with the diffusion of anesthetic agents, meaning they may not stay in place long enough to block nerve signals.
In other words, you’re not ungrateful or hysterical—you’re collagen-compromised.
2. General Anesthesia: It’s Complicated
While local anesthetic issues are often the most noticeable, general anesthesia brings its own risks. Patients with EDS may require higher doses or different combinations of anesthetic agents due to faster drug metabolism or unexpected cardiovascular responses. That’s right—your body might be processing the drugs too quickly, or reacting to them with wild swings in blood pressure, heart rate, or even temperature.
And don’t get me started on post-op nausea, pain meds that barely touch the pain, or being told you’re “too sensitive” when it’s clearly a drug mismatch.
The Dental Dilemma
Dentistry and EDS go together like oil and a house fire. Between TMJ instability, anesthetic resistance, and hypermobile jaws that dislocate if you yawn too hard, dental work can be a recurring trauma loop.
The biggest culprits?
Ineffective numbing, especially in the lower jaw.
Clicking or popping TMJs that flare up with long appointments.
Being treated like you’re difficult when you're just trying not to cry.
A promising alternative is articaine, a local anesthetic that’s been shown to be more effective in patients with EDS due to better tissue diffusion.
How to Advocate Without Losing Your Will to Live
Here’s where you reclaim some control. You’ve got the lived experience. Now you get to bring the facts to the table like a charming, well-researched wrecking ball.
Bring Documentation
Keep a running record of past anesthesia experiences—what worked, what didn’t, how you felt during and after. This turns vague concern into medical data.
Pre-Surgical Planning Appointments
Ask for a pre-op consult with your anesthesiologist. Don’t just tick the "no allergies" box and hope for the best. Bring your diagnosis, your records, and your spine (even if it’s curved and clicky). Insist on being heard.
Physical Safety on the Table
Hypermobile joints need proper positioning, support, and padding. Speak up before the procedure begins. Don’t assume they know to be careful with your joints—they often don’t.
Customise Post-Op Pain Relief
Many pain meds can be either too sedating or completely ineffective. Make sure your team knows you may need adjusted pain control—and that a shrug and some paracetamol won’t cut it.
If They Still Don’t Listen?
Then you do what every seasoned chronic illness warrior learns to do: escalate.
Ask for a second opinion. Send them the guidelines. Quote the studies. Or, when all else fails, change providers. You don’t owe your loyalty to a professional who’s only loyal to their own ego.
Final Thoughts
If you’ve ever left a procedure in pain and full of doubt, thinking, Was it just me? Did I do something wrong?—the answer is no.
Your experience is real. The science backs you up. And you are not broken—you’re bendy, complicated, and, frankly, fabulous.
So walk into those medical appointments like the resilient badass you are. Carry your notes, ask the awkward questions, wear your compression socks with pride—and if you have to educate your providers one laminated sheet at a time, so be it.
And after? Celebrate. Because you’ve just done the work of five people. You deserve a rest. And cake. Definitely cake.
Further Reading & Resources
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