I've had De Quervain's for 5 years. Not sure where to go from here
I'm 26 and have had de quervain's in both wrists/thumbs since late 2021. It took a long time for doctors to even acknowledge the hand pain and didn't really send me to any specialists. In all fairness to the doctors, I had become disabled in early 2022 with something that was more pressing at the time and the doctors fully focused on that. However, I do know that my de quervain's is co-morbid with my EDS. My hands are extremely hypermobile and my wrists are, too. This compounded with my class load and plans for the future.
My doctor told me to essentially treat it as broken for 12 weeks. I kept it immobilized in a splint for that time, icing when I could. When I needed to come back home to focus on my health instead of going to graduate school, I went to physical therapy. Physical therapy said to keep it braced for another 8 weeks, so I was wearing that splint for nearly 6 months straight. By that point, the pain was so bad that it was shooting up my elbows on my right hand and I had to shift my life onto my left hand (which was also starting to get bad de quervain's symptoms so I could barely do that either). Even as of right now, nearly 5 years later, I can't open my hand fast. You know how thumbs are supposed to be opposable? Guess again. I've done physical therapy several times now, I've gotten cortisone shots, I've immobilized, strength-trained — everything. Nothing helps that much. The physical therapy helped increase my mobility when it was at its worst, the cortisone shots helped for maybe a week tops. I live with a baseline of pain that's my new normal, and even typing or using a mouse is hard for me now. Extremely luckily for me, I got approved for SSI a handful of months ago and have been able to focus more on recovery... but through all of my efforts to be healthier again, my hands refuse to catch up.
I believe I can say fully that de quervain's has impacted my life for the worse. While I also had my other disabilities I unfortunately gained, the de quervain's was just the cherry on top. My entire life was centered around my hands. I was an artist; I was accepted to a fantastic fine arts school for a graduate degree. I was in the process of moving across the entire country to go to said graduate school and live with my partner at the time. But then all of this happened and I had to completely abandon my future. I was also a very seasoned musician: I used to play 6 instruments with piano being my favorite. Piano was probably my favorite activity, and I haven't played one beyond a couple of notes in five years. I've forgotten entire songs I worked so hard to learn. I was a a good writer, too, and now typing is too much.
All of this physical pain compounded with the fact that I lost my entire life before this all happened has just put me in a very bad place. You'd think I'd figure it out that the de quervain's was actually a disability for me too and that I wasn't just being dramatic. I keep reading on here that people go through the pain for months and can't stand it. I've been going through this for nearly half a decade. My doctors always made me think that I was being dramatic, or that it couldn't have possibly hurt as much as I was saying. So I never really thought I needed help with it and I just needed to suck it up :( in hindsight I probably shouldn't have let that behavior alter my plan of care of belief of my injuries, but it did. Nothing I can do about it now, though.
This is all to say, I've been contemplating the release surgery. I'm just deathly scared of the pain getting worse. I'm even more worried about what the complications would be for someone with as much hypermobility in the hands and wrists as I do; I know there's really no studies to comfort me about this. I've had other procedures and surgeries damage my nerves or outright made me bedbound from complications before and I just don't want to go through something like those experiences again.
TL;DR I've had really bad de quervain's in both wrists and thumbs for 5 years. I'm extremely hypermobile in the hands and wrists and I'm really worried about the procedure and consequences of someone like me getting it done since my doctors aren't explaining really anything to me. I want to feel relief and want to potentially get the surgery.
Has anyone here ever dealt with de quervain's as long as I have? Is anyone hypermobile in the hands/wrists and got the release surgery? Anyone have any advice? I know I have a rather complicated case here so I understand if there's not really anything I can do but try it; I just want to try and feel more secure about the procedure or any other tidbits of information that the doctor handling my case just does not care to tell me. I'm left so much in the dark here it's unbelievable.