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Hemidystonia that only feels like it worsens with movement
Every muscle on the right side of my body is shorter, tighter and more rigid than the left side, which is entirely normal - all following a high impact collision 17 years ago. Exercise feels good during the activity but afterwards the asymmetry is compounded. The muscles on the right side get even tighter, especially in the low back. It is crippling and makes me fearful of my next step. Does anyone else have this condition? The blank stares from doctors crush me. I feel so alone and isolated and demoralized. I’ve tried selective Botox injections but with only very limited improvement.
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Try an MFR therapist. A myofascial release therapist. You’ll have to go for a while, but they can do amazing things with the problem you have. Also find a good neurologist. Who does Botox injections. I’ve done that periodically over the years. It relaxes and paralyzes the muscles for about six months so you can catch a break and then retrain your muscles. Depending on your age and the reason for the condition they told me I would have this for the rest of my life and I certainly do. Even with an amazing cervical and lumbar surgery, the muscles are in “habit “mode and need constant attention.
I had an ependymoma removed from my spinal cord c6/c7 28 years ago. the tumor was attached on the inside left of my spinal cord. As a result, all of the left side of my body has attraphied / shrunk over this period of time. I've had too keep moving to exercised to keep the muscle tone as much as possible. I used to be fairly mobile ... these days I walk short distances to doctors appointments, church, & have a lightweight scooter to keep up with my wife. I have quite a bit of pain ... I normally take one tramadol 50 mg in the morning when I wake up to take an edge of the pain. I have 3 degenerated disks, & spinal stenosis. I do quite a bit of physical therapy, ride a stationary recumbent bike, I ride an adult electric trike (my wife and I love the ocean) ... I try to find things my wife and I can do together. My legs work pretty well on an electric trike. I live in Los Angeles and beaches are beautiful. I was a really good golfer at one time (scratch) but had to give it up three years ago (lost strength in my left hand & my balance has become questionable); as far as pain relief, you should try oblation (lower back) kills of the nerves on the disks or an epidural (three types) ... the oblatôn the nerves grow back over time (lasts one to three months) and the epidurals are the same amount of time. I have the same issues as you ... I just keep trying to find ways to control the things I can control ... and find things I love to due while I experience pain. My wife is also a good source of positivity. I feel lucky is a lot of ways. I'm in the first year of medicare & I joined the UCLA HMO ... great group of doctors & they have a pain management group in Santa Monica & in Torrance where I live. I forgot to mention ... I try to stay away from surgery ... they usually don't help with the pain. I did have successful carpal tunnel surgery on my right hand & elbow. Big help with my right hand as I was losing strength (stop the weakening).
I've tried most of the pain medications. Oxycontin was too addictive. My goal these days is to keep my pain levels below 6 as well as staying out of a wheel chair was long as possible.