Unknown muscle issue in upper mid-back

Posted by sedavey92 @sedavey92, Dec 17, 2018

I’ve had chronic back pain for 15 years and no one can figure out what’s wrong. It started when I was 11 – one night, I woke up in horrible sharp pain, trying anything to relieve it. Relief comes in the form of me moving/adjusting/stretching my back to make my muscles stop hurting – but relief only lasts a few seconds so I do it all the time. After having many MRI’s and CT scans, the only oddity is a series of 3 syrinxes that span the entire length of my spine – and mild scoliosis. Most muscle problems make the muscles painful to touch, but that isn’t the case for this. It’s like they’re hurting themselves but that’s it. I also have an incredibly tight back, with huge knots in my neck, shoulders, and back, and they twitch and move a lot.
The amount of pain can be unbearable and I’ve ended up in the ER a few times to try and get help. Sometimes shots of muscle relaxers help, sometimes they don’t. I’ve been accused of seeking pain killers because they dont believe I’m in pain since the muscles aren’t sensitive to touch. I go to the chiropractor and get deep tissue massages every other week, with no major relief. I’m afraid that it will never get better, and never be diagnosed.
Has anyone heard of anything like this? I’ve been researching for so long and haven’t come up with anything.
Thanks in advance!

Hi @sedavey92. I'm here to offer sympathy and concern more than information, because your discomfort and pain are not among my own maladies. My spinal problems turned out to be more about the pelvis, sacroiliac joints, and piriformis muscles than about my spinal cord or any of the major nerves emerging from it.

Your use of the term "syrinxes" provided me a clue, because it is a rarely used term — along with "neuroglial" cells that lend structure and stability to your nerves — that brought my focus directly onto neurological problems as opposed to muscular or skeletal problems. If that's the case with you, it might be understandable that exercise provides less and temporary relief.

Has a neurologist been on your medical team? Especially one who has extensive experience in spinal cord injury, including scoliosis, spinal tumors, trauma, degenerative disease, radiculopathy, herniated discs, spinal stenosis? The best of these doctors use state-of-the-art minimally invasive techniques with computer-assisted navigation as well as spinal endoscopy. You might ask your doctors about the wisdom of getting this type of doctor on your team of physicians. Martin

@predictable

Hi @sedavey92. I'm here to offer sympathy and concern more than information, because your discomfort and pain are not among my own maladies. My spinal problems turned out to be more about the pelvis, sacroiliac joints, and piriformis muscles than about my spinal cord or any of the major nerves emerging from it.

Your use of the term "syrinxes" provided me a clue, because it is a rarely used term — along with "neuroglial" cells that lend structure and stability to your nerves — that brought my focus directly onto neurological problems as opposed to muscular or skeletal problems. If that's the case with you, it might be understandable that exercise provides less and temporary relief.

Has a neurologist been on your medical team? Especially one who has extensive experience in spinal cord injury, including scoliosis, spinal tumors, trauma, degenerative disease, radiculopathy, herniated discs, spinal stenosis? The best of these doctors use state-of-the-art minimally invasive techniques with computer-assisted navigation as well as spinal endoscopy. You might ask your doctors about the wisdom of getting this type of doctor on your team of physicians. Martin

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Hi Martin, thank you for your reply! I haven't seen a neurologist specifically, but I've had many "quick checks" done at various appointments, with no obvious issues. I would've never thought to relate that with the syrinxes, so I'm going to do some more research on that! I appreciate your response to my mystery health issue – it seems that it may remain a mystery for now.
Regards, Sarah

@sedavey92 You might try something like myofascial release work. What it does is gently stretch fascia. From your description of over tight muscles, it sounds like this may work for you. I do this with my physical therapist who is expert level trained in the John Barnes methods of MFR. I have thoracic outlet syndrome that causes nerve compression in my neck and shoulder. It takes a long time to work through the layers of tight tissue, but when you can get back into better body mechanics and move again normally it feels so much better. I had a slight functional scoliosis that was corrected with MFR. It's a slow gradual progress. See myofascialrelease.com for information.

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