welcome to oneEDSvoice

- a positively charged Ehlers Danlos Syndrome community.
  • join today!
patient education

2 Types of Pain Ehlers-Danlos Syndrome Causes on a Daily Basis

key information

source: The Mighty

year: 2016

authors: Meredith Grigsby


Ehlers-Danlos syndrome is widely known for the chronic dislocations and subluxations as well as chronic pain. People hear that first part, but unless you’re experiencing it firsthand, no one really thinks about the snowball of symptoms that comes with simple instability. When your tendons and ligaments aren’t doing their jobs, something has to in place of them. I mean, you’re still standing, right? Yes! I call that the “compensation pain.” It is chronic and I also refer to it as the baseline pain. Ehlers-Danlos people experience many different types of pain, and usually all at once.

Compensation pain is when your tendons and ligaments are like “shredded bubblegum” (no elasticity) so your muscles have to work way overtime just to hold your body together. Think about that pain when you’re holding something so heavy for a while and it gets uncomfortable so you want to put it down, but you can’t. You keep holding it waiting for the sweet relief of dropping the weight but you can’t just quit yet. You start shaking and it gets a little embarrassing because you look and feel weak. The weight of this item is really wearing you down and you’re really not sure how much more you can take.

read more