I Can't Be the Only Person With This Issue

I have had muscle knots between my neck and shoulders that have never gone away. They spasm even tighter pulling my neck to the right and due to the location it affects the occipital nerve. We have tried prednisone no luck ; Botox no luck! They are looking at phenol injections. Tried massage therapy they can’t get the muscles to relax. Tried physical therapy with MRT therapy. It started in 2002 when I got MRSA bacterial spinal meningitis. It hurts really bad especially when it spasms tighter than it normally does. All the knot does is get angrier when you try to mess with it. Been diagnosed with dystonia my the neurologist and now the nerve pain runs straight down my back. I wish they would come up with a solution. I also have pro with my pirifomis muscle staying spasmed it pulls on you hip joint and your lower back. No relief the doctors have discussed cutting it in half except I would not be able to walk ever again. It’s frustrating and living with constant pain. Muscle relaxers due nothing to these knots and they never go away.

@artemis1886 Hello, Artemis, thanks for writing. It sounds like we have similar issues with the fact we have muscles that will not relax, and doctors have no idea why. Also, tests are not showing anything, and no medication has helped in the slightest.

I've had massage, physical therapy, acupuncture, trigger point injections, and Dysport (similar to Botox) injections directly into all of these muscles on multiple occasions. None of this has made any difference in the muscle tightness.

The big problem for me has been I do not fit the typical case. Especially not having any leg or groin pain. No sciatica issue causing pain down my leg, and none of the other questions usually asked by every doctor about nausea, fever, problems in the bathroom, etc. apply top me at all. It has only been these specific muscles that will not release no matter what is tried.

My EMG/ nerve conduction test shows the muscle are spasmed and contracted but they can’t tell me what is causing it nor why nothing works. No muscle relaxers including the soma which is a controlled substance, Flexeril, baclofen, Skelexan, and robaxin, I have tried Botox. Mine has gone on since 2002. It’s frustrating now my foot has muscle knots. I tried stem cell no luck.

@artemis1886 I did the Nerve Conductivity and EMG tests as well. I have what is called Denervation at the T12-L1 juncture of my spine. That nerve stopped working more than 2 years ago. So now I have Radiculopathy around the right side of my rib cage because the nerve isn't working.

Unfortunately, the nerve specialist I worked with gave up after he performed an Epidural at the T12-L1 vertebrae and there was no change at all. He just basically threw his arms in the air and said out loud, "I don't know what's wrong with your spine". That was it, he gave up.

This is why I have seen so many doctors at so many hospitals. Most of them give up after trying one procedure, one image, one recommendation, so I have to keep looking on my own. It's been my full time job for almost 3 years now, but I'm not sure what to do next.

Hello all I'm a fellow sufferer with chronic pain. I know I have tight muscles and muscle tension, which makes everything worse. There are some reasons why I might have pain but not to this extent. Although not, everyone is open to this however, if nothing else has worked. I would highly recommend delving into the mind body world, a.k.a. Neuroplastic syndromes
Most chronic pain is actually reversible and often not related to the structural abnormalities we all have. I believe strongly in this however for me, it's much more of an autonomic nervous system issue I believe and I'm have an atypical CRPS, which has made my pain increase. I would recommend going back to basics Reid John, Saryn,
Healing back pain.
Also ATNS association for the treatment of neuroplastic syndromes, symptomatic.me

No harm in looking up practitioners there are all the resources and there's plenty on YouTube
Dan Buglio, who was crooked from pain for 13 years has many videos on this
Dan Ratner pain psychologist also history of chronic pain he has cured
Howard Schubiner MD just wrote a new addition of his book unlearn your pain so there's lots to look at and it really can't hurt only the edge to potential healing
IMHO

@marcd2k I gave up looking. I started feeling more like a guinea pig than anything. The emg/ nerve conduction on me showed nothing wrong with my spine but just the muscle being permanently contracted. It’s an interesting sound listening to the machine and the noise it makes in the contracted muscle. Have you had a nerve rhiztomy where they cut the nerve to that muscle. The spasm is still there but it releases the nerve. They can’t do that to the one in my neck shoulder area. They do it in the piriformis muscle the sciatic nerve runs through that muscle so it being contracted it affects the nerve. It hurts to sit. I am ready for they to do another si rhizotomy.

Sorry for what you're going through Marc. I'm a candidate for fusing S1 through L5, but have put that off by maintaining a strong core. Even so, I wake up with a very stiff lower back everyday.

When you say the muscles have "locked up" - I take that to mean they are tight to the point of pain, and massage and dry needling have not worked.

I get dry needled in my upper and lower back every two weeks. The results have been v good but have taken time. One session isn't going to help much, it takes regular needling.

I hope you find an answer Marc. Have you gotten another surgeon's opinion on how well the fusion was done/is doing?

Joe

I am so sorry that you are experiencing this. Have you ever researched the diagnosis "Arachnoiditis" or "Adhesive Arachnoiditis " ?
I unfortunately have this condition after 9 back surgeries. You may want to research it and possibly talk with your doctors about it too.

I have seen Dr. Schubiner's video on unlearning your pain. I just want to know, has anyone actually been able to unlearn their pain successfully? It seems like an unlikely thing, but, who knows? Anything is possible.

@artemis1886
Have you ever tried dry needleing?
This was amazing. My PT did it and it helped the 1st day it was done. I had so much pain, I could not even lay my head/neck on pillow.