What does it FEEL like to have EDS?

People ask me a lot of questions about EDS (which is great) and my life living with it, but one question that only came up about six weeks ago by a very thoughtful person when she asked me “what does it FEEL like to have EDS? What is the pain like?”

I have been thinking a LOT about that ever since because the discussion was more of an eye opener for me than it was for her (I think). I thought about it and saidΒ “well, you know what it feels like when you sprain an ankle or a wrist or something Β ?…”Β and she said: no!

WHAT???? What do you mean you have never sprained an ankle or a wrist. I must have rolled an ankle more times than I could ever count and if you told me that it is over a thousand I would believe you! I roll my ankles and sprain my wrists multiple times a week, every week without fail …

So if you have ever sprained anything or even rolled it, it is that kind of pain. It is kind of a twang kind of feel as apposed to muscle pain which is somehow different and can sometimes even feel good pain. This is more the sickening kind, like when your stomach feels ill … It is also consistent, no matter what position you are in, you can’t rest from it like you can from muscle pain. Cuts are a sharp pain, so it isn’t like that either, but it isn’t a dull pain like being hit or whacked either.

That is the pain of the tendons and ligaments, and then for those of us with strong muscles we also have muscle pain from our muscles over working to protect our joints, and that is not like a workout muscle pain which goes away on rest, this is a fatigue kind of a cramp. Have you ever shivered for so long that your muscles ache, or had to stay in one position and hold those muscles tight for a few hours, or for a loooooong period of time?

I read an article today that was posted on one of the EDS support groups that I belong to. It’s put together from a questionnaire asking what it feels like to have EDS, so there are some insights there as well, but this question that I was asked was more about what kind of pain and feelings are involved and it was a HUGE eye opener for me as I truly truly though that everyone rolls their ankles and wrists all the time!!

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