Musician's Focal Dystonia... Really?

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Fuck...

I'm dealing with musician's focal dystonia, which I was just diagnosed with a couple weeks ago. It's a rare, incurable neurological disorder that (for me) now makes my middle and ring fingers on my fretting hand uncontrollably curl in and under the neck when I try to play guitar. I cannot play at all right now - haven't been able to for a several months. My guitar playing has been going downhill and getting tight and uncomfortable in my left hand for a several years, but it got WAY worse in the last six months and now I can't play at all. It's tight and uncomfortable and the uncontrollable curling of those two fingers on my left hand makes me sound like I just picked up a guitar if I try to play anything... I'm a shadow of hat I used to be capable of and trying to practice or control the curling makes it worse...

The only thing that the doctors say may help is botox shots straight into the muscles that control those fingers - it is a fucked up process though... They have to get the right muscles and the right amount of botox to paralyze the curling response while not making the fingers stop working completely. It's trial and error and the shots only last three months or so before they have to be done again. It's my only chance to play guitar again though, so I'm gonna try it and se what happens. There is another guitarist at the motion disorders clinic I'm going to and he is a pro player and had to stop - his whole livelihood at stake - but now with the shots, his issue is under control and he was able to return to pro playing again... Hoping for the best, but it definitely does not work for everyone.

If that doesn't work, normal guitar playing is pretty much over for me because there is no other therapy or cure... I've started playing slide on my resonator guitar just to make some music - it's the one thing I can still do with my left hand...

I had a good run though - at least I have some clips and stuff that shows that I used to be able to play some cool, challenging stuff...

Just venting... Guitar playing and music have been a huge part of my life since I was 12.. I love it more than anything, but it might be over...

Steve
 
Sorry to hear that man...even if we are not pro players its still is a terrible blow not to be able to play the instrument that we love and put so much time and our lives in. Im going through a weird thing myself with my left index finger...thought it was arthritis but its probably nerve damage of somekind thats making it stiff and numb.
Hope things work out for you Steve and the treatment has a positive effect...stay positive :thumbsup:
 
Damn dude.... Maybe those shots will buy some time.
Remember, no need to be Yngwie to make good music, just banging some chords can be fun too
Good luck!
 
Really hate to hear that. Sounds much worse than what I'm dealing with... I've developed "trigger finger" in my ring and pinky fingers on my left hand, which makes the tendons bind up and your fingers kinda get stuck for a second when they curl in. Mostly managable if I stay hydrated, stretch regularly, and take NSAID's... and accept that my pinky isn't reliable anymore so I have to do a lot more three-finger fretting.

I really hope you can get it under control. I can't imagine a much more frustrating sensation than to have your fingers do things that you can't control.
 
Wow Steve...can't even imagine how you feel like. I do hope the botox shots are what it takes.
 
War Admiral":23x5twlm said:
Sorry to hear that man...even if we are not pro players its still is a terrible blow not to be able to play the instrument that we love and put so much time and our lives in. Im going through a weird thing myself with my left index finger...thought it was arthritis but its probably nerve damage of somekind thats making it stiff and numb.
Hope things work out for you Steve and the treatment has a positive effect...stay positive :thumbsup:
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Get an NCV/EMG test. That will show if you have any nerve damage. I had one and it was clear - no carpal tunnel and my nerve responses were "like a 20 year old" according to the doctor. I guess nerve response declines over time, but I'm 54 an mine hasn't...

Yeah, guitar playing and making music are not hobbies for me. It's a part of me. I've been doing it since I was 12 years old. To have it taken away in this bizarre way is crazy...

Definitely trying to stay hopeful and positive, but I've been dealing with this since the early 2000s. First it was my middle finger not listening to me, then the ring finger and now this uncontrollable curling. Tightness, shaking and discomfort playing...

Well, I've also decided to keep making music by playing slide. Been playing a lot of slide the last few weeks and having some fun with the guitar for the first time in months. It's the only way I can play anything with my left hand right now...

Steve
 
crankyrayhanky":18xmeoa5 said:
Damn dude.... Maybe those shots will buy some time.
Remember, no need to be Yngwie to make good music, just banging some chords can be fun too
Good luck!
Click to expand...
Thanks man - that's just the thing - I can't even play chords anymore because those two fingers on my left hand just curl up under the fretboard as soon as I try to play a chord. No more chords for me unless the shots work.

Steve
 
Skrapmetal":15s5uesm said:
Really hate to hear that. Sounds much worse than what I'm dealing with... I've developed "trigger finger" in my ring and pinky fingers on my left hand, which makes the tendons bind up and your fingers kinda get stuck for a second when they curl in. Mostly managable if I stay hydrated, stretch regularly, and take NSAID's... and accept that my pinky isn't reliable anymore so I have to do a lot more three-finger fretting.

I really hope you can get it under control. I can't imagine a much more frustrating sensation than to have your fingers do things that you can't control.
Click to expand...

I have trigger thumb in my right hand, totally know what you are going through. The cortizone shot in my thumb helped some, but didn't stop the issue. Have you gotten a shot yet?

Oh and to steve, sorry man. Try to stay positive, that's the toughest thing to deal with when you have an injury is the mental impact. Really easy to get down....
 
BTW - thanks for listening and responding guys. I really appreciate being able to talk to you about this. You guys are the only ones who truly understand what I'm going through and how much music and guitar playing mean in my life. Unless you live it like we do, you can't really understand what the loss means and that can be frustrating...

Steve
 
Sorry to hear that Steve. If you weren't in an area of the country with higher tier medical services I would say get a second opinion but I'm sure you have done that already multiple times.

Hope you recover. :)
 
Wow....sorry to hear that man!
I have a very superficial ulnar nerve in my left arm so my pinky and (half) my ring finger constantly go numb and the nerve has been permanently damaged from years of pressure on it so I feel your pain!
We should set up a pinky support group...maybe make a few "WWJD" style wristbands and start a foundation.
Good luck with it and I hope the botox works for you!!
 
blackba":g6ksk617 said:
Skrapmetal":g6ksk617 said:
Really hate to hear that. Sounds much worse than what I'm dealing with... I've developed "trigger finger" in my ring and pinky fingers on my left hand, which makes the tendons bind up and your fingers kinda get stuck for a second when they curl in. Mostly managable if I stay hydrated, stretch regularly, and take NSAID's... and accept that my pinky isn't reliable anymore so I have to do a lot more three-finger fretting.

I really hope you can get it under control. I can't imagine a much more frustrating sensation than to have your fingers do things that you can't control.
Click to expand...

I have trigger thumb in my right hand, totally know what you are going through. The cortizone shot in my thumb helped some, but didn't stop the issue. Have you gotten a shot yet?

Oh and to steve, sorry man. Try to stay positive, that's the toughest thing to deal with when you have an injury is the mental impact. Really easy to get down....
Click to expand...

I really don't wanna steal Steve's thread because our issue is miniscule compared to his, but yeah I've had the shot once. It helped for a while, but it eventually came back. It definitely comes and goes, and gets worse when I get dehydrated a lot in the summer. The only thing that feels like it has been a fairly permanent outcome is that my pinky feels very weak even when I'm not having tendon-locking issues. Feels like it has sapped the strength out of it.

Ring finger is much better, though. Doesn't get weak, and doesn't get the trigger-locking thing very often anymore.
 
I am sorry to hear about your issue. I am 45 and dealing with something a little different. I have a pinched nerve in my neck and it is causing me to have spells where my entire right arm hurts and tingles. It feels like my hand is swelled all of the time and whenever it happens I have a hard time holding a pick. I am determined to overcome it but time will tell. I may have to have surgery.
 
Sorry Steve, That so sucks. Try Tommy Copper fingerless gloves. Get the smaller one. Might help. I would also try acupuncture, PT, and Chiro. It might help regardless this is neuro. My Wife sees on who is a part of a team with a Chiro and Physical Therapist so it's a 3 way treatment where one suggests to the other and they come up with a treatment for her. She was debilitated and this worked wonders. Three herniations in C1, C2, and C3 with Arthritis in C1 causing severe migraines. You have hope Steve. Just have to go through the paces and not give in too soon. Best Wishes to you. we all know your passion for guitar. :rock:
 
You know we are all pulling for you Steve. Keep us posted.


Jim
 
Sorry to hear about this, Steve. I can only imagine how tough it has been dealing with this. Keep your chin up, stay positive and keep working with the doctors - you never know what amazing things could come of it.
 
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