Chronic pain in Neck, shoulder and arm

Posted by jack993 @jack993, Sep 4 3:51pm

My wife has this chronic pain that was faced since 2021 to her neck, RT shoulder and RT arm. She is 31 years old now and still having the same pain and we can say that gets worse with time.
Her symptoms started on Dec. 2021, with stiffness and pain on her RT hand especially on her thumb, after a while swelling started to appear on her hand and a circle-like bump sometimes appears which makes the pain level to spike. One year later and during that year, the pain expanded to the rest of her fingers, elevated to the elbow and shoulder with severe pain, weakness, numbness, swollen shoulder blade, and her arms weren’t raised more than 40 degrees. After visiting 42 different doctors specialized of different fields, all tests and MRIs were done, she was diagnosed with a mild compression on c5-c6 nerve root, thus she had an ACDF to her spine on Jan. 2021.

Three months after the operation, and after attending 40 sessions of physio therapy, the same diagnosis appeared but without the numbness symptoms. Doctors had their doubts that she might have a frozen shoulder, thus she was injected with cortisone shots twice on the RT shoulder and once on the LT shoulder and she wasn’t getting better at all. On Jan 2024, she performed a capsular release surgery and no frozen shoulder was diagnosed while operating the surgery.

Unfortunately, all inflammation that were removed during the last operation, got back worst than before. All doctors said that don’t know how to cure her.

Blood tests have been done, rheumatoid factor and ANA test; all numbers were normal within the average.

Till now, her symptoms are getting worse than ever.

If you have any idea that might help us solve this issue, please let me know so i could provide you with more details in depth.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

jack993 | @jack993 | Sep 13 4:42pm

In reply to @jenatsky "Has she had any physiotherapy?" + (show)

60 sessions till now with no progress

jack993 | @jack993 | Sep 13 4:48pm

In reply to @loriesco "sounds horrible (as I sit here in the same kind of pain!) Try botox in the..." + (show)

Luckily, no compression on any nerve root and the drs advised her to stop wearing the neck collar to avoid any complications.

Regarding the medications you suggested, i will ask her doctor if it causes any issues on her stomach as she has an issue due to high amount of pills she was taking.

jack993 | @jack993 | Sep 13 4:50pm

In reply to @leigh17 "Has anyone checked her for brachial neuritis? I have a suspicion. This might be what it..." + (show)

Will check this one for sure.
Thank you for your help dear

leigh17 | @leigh17 | Sep 13 6:17pm

In reply to @jack993 "Will check this one for sure. Thank you for your help dear" + (show)

You are so welcome. I pray I pray that she gets better soon.

Jennifer, Volunteer Mentor | @jenniferhunter | Sep 14 10:10am

@jack993 These symptoms may represent something like Thoracic Outlet Syndrome. Was there are injury that caused the spine compression? Having had spine surgery is also going to increase inflammation a lot and cause some swelling. TOS is a problem of compression of nerves and blood vessels as they pass from the neck and between the collar bone and rib cage in some small spaces. All of that is pretty close to a surgical site for C5/C6.

TOS can be caused by an injury like a whiplash or repetitive stress and also be postural or related to physical build. I am a patient who also had a C5/C6 spine issue and I'm fused there. I have TOS. My hands used to get cold and turn blue because circulation was being cut off. It also sends aching pain and weakness into the arms. A couple times, half of my forearm was numb, and my PT could get that feeling restored with manual therapy.

TOS is most often missed and a lot of doctors don't understand it. I suggest, seek a specialist at a facility that lists TOS as a condition they they treat. I came to Mayo for that. I have been in a few years of treatment in physical therapy, but not typical strengthening PT because that makes it worse. I need to stretch out the tightness and what helps that is Myofascial Release.

Here is some information.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
Here is our discussion on MFR therapy.
Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Have you heard about MFR before?

jack993 | @jack993 | Sep 15 2:58am

In reply to @jenniferhunter "@jack993 These symptoms may represent something like Thoracic Outlet Syndrome. Was there are injury that caused..." + (show)

Hello Jennifer and thank you for your reply.

Doctors suspected TOS two years ago. Thus she had XRays and MRI (with contrast) to check their suspicions, and luckily there was no indication for that.

As for MFR, we heard of a pain management doctor which patients were calling him “the miracle doctor” where he diagnosed her with MFR. he injected her RT shoulder with 4 injections that contained “Dextrose”, and what happened then, she was almost semi paralyzed for almost 2 weeks with dizziness, muscle weakness and many more symptoms, while she couldnt even walk properly. A month later, her LT shoulder (which was perfectly fine), got the same symptoms as the RT out of the sudden.
I have no idea what was the cause but doctors think that her body couldnt handle a new inflammation that caused by dextrose while her body was trying to fight the inflammations that were already in her shoulder before the injection.

Any idea if those symptoms are common while MFR?

slkanowitz | @slkanowitz | Sep 15 8:22am

My hubbie has the neck issues with flattening of the spinal cord, but the hand symptoms (numbness in thumb and fingers ) are now suspected to be carpal tunnel. Sometimes the obvious gets the focus and Drs don’t think of maybe two things are going on. I would suggest she see a hand specialist ( orthopedist) for carpal tunnel evaluation if she still has hand symptoms. One simple thing for that- have her wear a wrist splint several days and see if the hand symptoms improve aa bit. It’s a home based diagnostic test! Take imaging and EMG reports with you. I am focusing on her hand since others have focused on her neck. Good luck!

Jennifer, Volunteer Mentor | @jenniferhunter | Sep 15 12:28pm

In reply to @jack993 "Hello Jennifer and thank you for your reply. Doctors suspected TOS two years ago. Thus she..." + (show)

@jack993 TOS (Thoracic Outlet Syndrome) patients can have normal muscle strength, normal nerve tests, and there may not be anything showing up on an x-ray or MRI as it is a muscular problem and issues of tightness in the fascia and possible scar tissue within the fascia and muscle. MFR (Myofascial Release) isn't a diagnosis. It is a hands on manual therapy technique to treat tight restrictive tissue and it has helped ease my symptoms of TOS. Myofascial release is like a massage, or more specifically, the therapist pushes against the barrier in the tissue (like kneading bread) and they just hold that pressure and wait for the fascia to unwind. They have to get a sideways shearing motion. The tissue will release and start to slide in about 5 minutes.

You can find out more at https://myofascialrelease.com/

The tests to diagnose TOS are listening to the pulse in the neck or arm, then the patient turns their head and/or raised the arm. If that pulse stops, as mine does, it confirms TOS. They also test blood flow with either Doppler imaging with the arms in various raised positions, or at Mayo, they put tiny blood pressure cuffs on my fingers and measured changes with my arms in various positions. TOS causes blood circulation to be cut off.

Sometimes doctors inject Botox into muscle trigger points. That is not MFR. MFR is manual physical therapy done by a physical therapist or massage therapist. There is also dry needling where an electrode needle is placed in muscle to dissipate the electrical charge it is holding with a muscle spasm. That's also not MFR, but my PT also does that.

Many doctors misunderstand TOS. You might want to find a doctor who treats it for another opinion. Many doctors think it's rare, but it's rare to find a doctor who can diagnose it properly. They are often thoracic vascular surgeons.