11/16/2025
I’ve been sitting with this for a few years, chatting with colleagues and patients about a chronic pain scenario I see with surprising frequency that deserves more attention. Here’s the profile:
You come to the clinic grasping at another straw in your struggle with chronic joint and muscle pain. You don’t quite feel at home in your body — sometimes it feels like you’re disconnected from it. Your joints ache, click, and sometimes feel like they might slip out of place.
You’ve always known you were double jointed. Yet despite having the flexibility to put your palms on the floor, your back has always hurt; even as a kid you struggled with what everyone called “growing pains.”
Now that you’re older, your body tires easily, and even gentle exercise can leave you sore for days. And then there are the other symptoms that make everything harder: migraines that knock you flat, dizzy spells when you sit up too fast, and chronic fatigue that doesn’t seem to make sense.
You feel weighed down by labels like fibromyalgia, POTS, and “degenerative disc disease.” Maybe as an adult you’ve been diagnosed with ADHD or anxiety, making sense of years of restlessness or overwhelm, but (much like your TMJ problems and overcrowding) it hasn’t felt connected to a bigger picture.
⸻
I don’t know what it feels like to live with hypermobile Ehlers–Danlos syndrome (hEDS) or Hypermobility Spectrum Disorders (HSD), but I have heard these stories again and again.
This isn’t a checklist or diagnostic tool. Some symptoms are well documented in hEDS/HSD, others are still under study, and the role of a physician is critical. It’s a clinical diagnosis without conclusive lab tests — but reframing these seemingly unrelated problems as part of a systemic experience can be deeply meaningful.
If this hits home, I’m sorry it’s been so hard to feel validated. You are not alone. More clinicians are recognizing the nuance and complexity of it; let your story be heard, and assemble a healthcare alliance to help navigate this relatively unseen condition.