Saw our wrist doctor again today. I was expecting we'd jump straight into OT today, but apparently not. He wants to wait one more month first, and we set up an appt. Okay, fair.
What's really important is what he said next.
On the way out, he said, "Have you been checked for Ehlers-Danlos Syndrome? You seem like you have it."
So that's... okay. I need to get into this for a minute. No, we haven't been tested for it before, ever. But Ehlers-Danlos, or EDS for short, is a hypermobility disorder. And hypermobility disorders are genetic.
I talked about it with one of our best friends who knows a lot of medical and condition stuff - his brother has EDS. We traded symptoms. Some of the things he said added up with us.
And the real kicker - our brother is hypermobile. He's triple-jointed. That means there's a precedent that hypermobility is in our genetics.
From what I can understand, hypermobility does not always mean EDS. But EDS is caused by hypermobility. And for the record, broadly speaking, hypermobility means you can move your body in ways normal people can't?
Why does this matter?
I've been hearing the names Ehlers-Danlos and EDS for years as I've researched and trudged through chronic pain forums online. It's very serious. As always with chronic pain stuff, it's incurable.
EDS causes, from what I remember (and I heard there's many types of EDS, but from what I know about our symptoms), overly sensitive and easily bruised skin, weirdly "stretchy"/"tight" skin (?), and of course, chronic pain.
But the reason the doctor brought it up is very important. He said that a hypermobility disorder explains why we ended up with so many entrapped nerves (and possibly more we haven't found yet!) because hypermobility moves the body in unnatural ways and could have moved our nerves into unnatural positions...
First of all, that alleviates some guilt that our carpal tunnel might've been my fault. Phew. Yes, I was seriously worried about that!
Second of all... that explains a lot. And on top of our wrists and elbows, there's been some other places that've always felt "weird" and "tight" until we "pop" them in ways that... seemed to baffle and scare some doctors years ago, our mother as well, and even our friends?
What can we do about it?
All I really can do is try to schedule an appointment with our primary care, to get it tested for or looked at.
That friend from earlier gave the very smart suggestion that I should be asking doctors for write-ups about our disabilities, so we can collect them all and apply for disability in person. EDS and fibro are extremely serious.
But that gets into future, which is a topic we'd really like to avoid. It very quickly becomes stressful.
Other thoughts and news
On Monday of next week (6 days from now as I write this), we're having another surgery - our sixth this year! It'll be for our nose this time. While he can't fix the septal hole causing chronic sinus headaches, our new ENT will be opening all of our sinuses to improve breathing and draining permanently. It'll help!
Recovery from this one is reportedly going to be worse than the recoveries for our wrist and elbow surgeries up til now. And I can tell you from past experience... recovery from nose and sinus related surgeries is very painful. It'll be a stressful endeavor, which is why I'm trying to move health appointments around so we have ample time to recover after this upcoming surgery before anything taxing.
