Help needed for Musician with EDS/hEDS/HSD

Hi, I am 36 years old. At 11 years old, I began to learn the guitar. I played without pain/problems for seven years. At 18 years old, I was a music performance major in college, studying guitar. I practiced heavily, and one day, I noticed that I had played too much, and something was wrong. Little did I know that it was a life altering event.

I ended up having to stop playing, and I took two years off of playing, during which time I had 80 outpatient rehab visits, cortisone injections, visits with an osteopath, etc.. at the time I was told it was tenosynovitis, though looking back it wasn't because it never went away

During my first two years away from any guitar playing, first it was six months off, with cortisone injections and therapy and then I began playing slowly, but I only made it two weeks into playing before being overcome with pain and having to stop again.

From then, I took a year and a half off and did more hand therapy and saw an osteopath, and after a year and a half of no playing, I learned that I needed to relearn to play without any gripping whatsoever.

Gripping is what every guitarist does and it’s what allows you to put physical tension into the music. It’s kind of required for certain types of music. And so although I did relearn to play differently, without gripping, (as gripping of any kind, created pain soon after), with this new technique (extending each finger individually from it’s base knuckle), I have always been limited. I never figured out how to bend notes but more importantly, from the moment I pick up an instrument (piano included) there is a ticking clock that starts, where I will have to put the instrument down for the day after 30 minutes or so, or suffer the same consequences. And that’s never changed.

And in the last few years, my hand issues have gotten worse. Learning to play without gripping was my workaround, but now my workaround has failed and its like I need a workaround for the workaround

I went to Mayo Rochester, and we ruled out all things rheumatic, but did not get an answer on my hands, only clues.

I seem to have this issue that behaves oppositely from rheumatism, where the more I use it, I lose it, but taking rest seems to help. However, the rest only helps it recover so much (80-90%), and once I use my hands/wrists to play the guitar or piano again, the problem immediately returns.

Since 2007, I have always taken what I can get in terms of practice time, and I worry about potential long-term damage i’ve caused.

Prior to my wrist and hand problems that began at 18 yrs old, I never had any of these problems. In fact, I could play for hours on end. However, ever since that one day in 2007, I’ve had wrist/hand issues and I’ve had them for the last 18 years.

Is this something that anyone else has heard of or deals with?

I have gotten MRIs of both hands and forearms done, and Mayo says there is nothing structurally wrong with my hands…

Being a musician that cannot express himself musically has been the greatest source of pain in my life

I’m thankful for anything anyone can give