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Thread: It's been confirmed... I have Dystonia too!

  1. #1
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    Default It's been confirmed... I have Dystonia too!

    I suspected this deep downinside, but kept the stiff upper lip and kept marching on. My neurologist said I have dystonia and has prescribed Baclofen which is a muscle relaxant that messes with the GABA part of the nervous system in the spine. This medication helps, but it makes me so sleepy and has other side-effects I need to watch for even on the smallest dose I’m on at the moment.

    In the middle of last year I started with odd pain in the bottomside of my fingers on my left hand. It wasn’t terribly bad and felt more like sore muscles or tendons like you get in your feet from walking a lot, or up in your shoulders when tense. When I stopped practicing the piano, the pain went away, making me think it was muscle strain due to all the tension in my house at the time. As time went on, the left hand got worse. I thought I had done some joint damage from the Chopin Polonaise I was working on with the needed big chord hand positions and stretches by doing something stupid like playing with the wrong fingering, and causing tendonitis by misreading a 3 for a 2, or something else really stupid.

    What was odd too is the left hand also would “get goofy”, meaning instead of the 4th finger doing what it was supposed to do, the thumb would move instead, or the 3rd finger would move instead of the 5th, which is very annoying and made me make a lot of mistakes. I also had issues where suddenly I couldn’t play crossed hands, or hands together. Scales too were broken, which really annoyed me because I got A+ grades on my scales while at university. I normally can play 4-octaves in any scale accurately, but this time nope they fell apart and badly.

    I also couldn’t role chords quickly or trill quickly. My trills in Mozart are breathtaking and a subject of some jealousy from some of my previous teachers. They went from smooth and quick, and finished to a blub,blub, blub, clumsy sounding mess. A turn too in both hands together was confusing. I couldn’t coordinate the two hands to do this, or initiate any turn in the left hand for that matter. I started to panic because I didn’t know what was happening at first. It was as if I forgot how to do things. When that occurred, I would stop and play something else and then got back to what I was doing, and everything was fine.

    Finger slips usually occurred in really complex pieces such as a Bach Fugue with all the voices and parts doing things, or the Beethoven sonatas I’ve been working on, and I thought it was me being stupid. The turn and trill issues occurred sporadically and I attributed that to me being stressed and tired, then it all went away and I forgot about it because it was as if nothing happened and everything was normal including the tight fingers.

    But I should have known! If I rubbed the palm of my left hand, the fingers curled tightly and painfully, and this wasn’t just occurring in my left hand now. My right hand too got into the act. One day while talking with my brother about nothing in particular, my right thumb decided to fold its self over on to my index finger. The pain was awful and I couldn’t move it away without taking my other hand and pulling on it gently to loosen it up. I also had painful spasms in both feet, and occasionally on my right side too which would wake me up in the wee hours. In fact I had this in the feet first then it was the hands. If I touched a foot the wrong way during the night, like when scratching an itch on the outside of the foot, the spasms would kick in with unrelenting pain! My neurologist increased my anti-Parkinson medication and that worked initially, but I developed side-effects that forced me to stop them completely which added to the problem. Seeing bugs, hearing things, and seeing rats is not fun, and neither is the awful flu-like nausea.

    Just as more panic set in, everything went away again except for the stiffness in my left hand, and then about a month ago, I was playing and this really hurt the bottom of my hand again where the index finger connects to the palm. Suddenly after rubbing that spot, a dark bruise and lump appeared! I got scared and I made an earlier than scheduled appointment with my doctor. After the examination, my neurologist said it wasn’t the piano playing that caused it (I did a silent happy dance in my head when she said that), and it’s from the tendons tightening up into what they call contractions. At my appointment last Friday, she also noticed that I make a fist with my left hand while walking, which is tight enough to cause bruises in the palm where my fingers dig in.

    After all this I know it’s going to take time to get back to ‘normal’ if I can. I need to give the Baclofen time to get into my system so I can hopefully get back to playing. My doctor told me to stay away from the keyboards for a few weeks (A few weeks!!!!). She plays the violin and piano and understands my predicament here with stopping, and we usually talk about Beethoven at most of the visits. She said for me to see her in 6-months unless something else happens. Fingers crossing here, no pun intended, there are no “something else’s that require earlier visits.
    Last edited by JCitron; March 25th, 2019 at 02:32 AM.
    John
    Trainz User Since: 12-2003
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  2. #2

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    I am so sorry to read this John.
    It sounded scary to read, so I can't imagine what a hell it would be to experience.

    I hope the medicine will eventually turn your back to at least a little bit of normal again.

  3. #3
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    Oh wow, John, life is giving you a few kicks when you really don't need it. Some of your symptoms seem a bit familiar to me but no where as intense.

    Maybe it's time to re-evaluate your activities and not just the harpsichord or piano, but also keyboard usage. I don't think society really understands RSI and it's potential for long term harm.

    I'd be interested in how your new medication works out.

    Paul


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    My goodnes John, that is not good news.

    I wish you well with your treatment and hope that you can find comfort in the fact that the Trainz Community will have you in their thoughts.
    Graham,

    A member of TCWW

  5. #5
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    I wish you a speedy recovery John, that's terrible news indeed.

  6. #6
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    John, a quote that I hope fits, "When you're going through Hell, keep going".

    We stick together.

    Alan

  7. #7
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    Ouch! John, not what you wanted to hear.

    I sympathise, music being one of my other hobbies, played Guitar, Mandolin, 5 String banjo and Bass in a semi pro capacity up to around 10 years ago when I had issues with my left hand painfully locking up on me, somewhat embarrassing when half way through a gig!

    In my case it is just a tendon issue, Thinking that was it as far as playing instruments was concerned I completely gave up playing anything for a few years which was hard, given I was used to practising for a couple of hours every day, taking up Trainz helped in giving me something else to concentrate on!
    Anyway as it doesn't appear to have got any worse apart from an occasional twinge when doing something fiddly with my left hand, it hasn't got any worse so have taken up limited practising again, just say fifteen minutes every couple of days which seems to be OK and so far after 12 months, no lockups and my brain doesn't seem to have forgotten where the fingers go. Got rid of the Bass as I suspect in my case that may have been the trigger, having small hands and over stretching.
    It's just the index finger that's the problem tendon and due to a couple of my fellow musicians having similar issues made worse by having it fixed! I declined. My current doctor agrees that if it's not causing any problems at the moment leave well alone just don't overdo the playing.
    Hopefully a rest may help in your case.
    Malc


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    Dear John,

    reading your post and outcry, we can imagine what you're going through.
    Hang in there, adapt and try to relax your entire body and mind as much as possible to start a speedy recovery.
    Hope the medication work soon!
    Big big hug from Ning and me dear friend!!
    The makers of the famous Canadian Rocky Mountains routes
    Roystrainz new routes are marked with TRS19
    Master my all new Canadian Rocky Mountains routes on TRS19

  9. #9
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    Thank you for the support. It's been a rough ride not only for me but also for my dad who went to hospital yesterday after falling in the shower a week ago. So again there's been way too much going on to respond to everyone let alone deal with the medication and everything else!

    Anyway. This isn't the RSI type, aka primary dystonia caused by repetitive motion or sustained positions. Musician's cramp is a good example. @Clam1952 (Malc) you be careful of that! The concert pianist Leon Fleischer has this and so does Gary Graffman.

    What I have is the secondary form caused by a drop in my dopamine levels from not taking the anti-Parkinson medication. It's complex, I know. When the meds go off, or they are depleted, dystonia and other symptoms appear. I can no longer take the medication due to severe hallucinations and nausea that's beyond the flu-bug. When I saw rats (not my sister's ex boyfriend and friends) during the day, and the big white one wasn't my cat coming to steal socks, I knew something was up. This was in addition to the massive number of bugs and the shape shifters at night. It got to be too much and I was afraid to sleep! With that, I cold turkey quit the medication, and the dystonia came on worse than ever.

    Stress does play a big part in the flare-ups as I found out, and I've been under horrible stress since I've lived in my house. I'm ready to move just to get away from here, but can't do that unfortunately. In the past 2-years alone, we have had two deaths, and other things occur that anyone dealing with only one of these situations would drive them crazy. Experiencing stuff like this constantly since 1999 eventually wears one down, and things break.

    As usual, I will get through this and continue on. I stay focused on things I love, people I love, though this is getting to be fewer and fewer, and I try so hard stay positive.

    This shall come to pass as they say. The problem is how much longer can I go on. My upper lip isn't as stiff as it used to be and I'm not as strong as I used to be.
    John
    Trainz User Since: 12-2003
    Trainz User ID: 124863
    T:ANE Build: 94829
    TRS2019: 98592

  10. #10
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    I'm no medical expert but I do know that a drug's effectiveness varies over time. Any number of factors can cause it and you should discuss it with your doctor. I take a lot of medication for blood pressure and, after starting on an extra med of just a half tablet, it knocked the socks off me. I tried cutting it into quarters and that worked well. My doctor was surprised but happily accepted my results. His latest prescription now says a quarter per day.

    Paul


  11. #11
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    Hiya John,

    I'm so sorry to hear about your dad, and your health problems. You're certainly doing it tough.

    I wish you all the best mate, stay strong, hang in there.

    We are all thinking about you and hope you can find a way to make life more comfortable.

    Cheers mate,

    Roy

  12. #12
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    Hi John. I too am saddened by your diagnosis.

    My thoughts are with you and I'm pulling for a fast and full recovery.

    Get better soon!

    Cheers
    Chris (nawlins)
    "If all else fails, read the instructions."

  13. #13
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    John, I really hope for a quick recovery, you will be sorely missed here! Maybe one of those voice to text thingys….
    TRS 2019 - This is not your father's PBR.....

  14. #14
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    I'll be poking in here from time to time. So far, fingers crossing under my free will (A dystonia joke), I've had fewer issues since the Baclofen. This has allowed me to practice the piano a bit more, and do other things, which I couldn't do before but this comes with a cost. The side-effects are mean! Those headaches and blurred vision are bad, and wearing prizm glasses combined with the twitching eyes makes me so dizzy all I can do is close my eyes and sleep. Combine that with the really, sleepy, sleepy, ever so sleepy tiredness, and I'm done.

    As time wears on, if I don't wear out in the meantime, I'll get used the side-effects and be back in full force so watch out!
    John
    Trainz User Since: 12-2003
    Trainz User ID: 124863
    T:ANE Build: 94829
    TRS2019: 98592

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