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Other Chronic Pain

Thread starter #1
Hi everyone,

I hope I'm posting this in the right place. I guess I'm just looking for some company who understands where I'm at.

I've had chronic neck and upper back/shoulder pain for 8 years. It feels like my muscles are being pulled to their limit and twisted to try and turn them into an actual rope most days, not sharp stabbing pain, but this pain like my muscles are being pulled like taffy. I'm in my late twenties now and I was in my early twenties when it started, but it didn't really get bad until 4 years ago. I have good days and bad days, but I'm generally in pain all. the. time.

My husband doesn't even ask me if I'm in pain anymore because we just assume I'm always in pain. It's a celebration when I'm having a low, almost-no-pain day.

I've been in and out of the doctor, in and out of PT, in and out of pain management specialist offices. I've had nerve-burning, which didn't help, I've had injections, which don't help, I've had my thoracic spine and cervical spine looked at in MRIs and they don't show anything. I flat out refuse to take opiods because I have this weird fear of addiction (I hardly take my Xanax when I'm panicking because I fear I'm going to get addicted to it, one of the many things I'm working on in therapy).

I'm an educator and we started remote today with all day training from 8 AM to 3 PM with 15 minute breaks in between an hour of sit-and-get video-conference style training, and I had 5 hours of agony afterwards. I used my pain numbing cream prescribed by my pain specialist that doesn't cut through my pain as much as it needs to (goes deep into the muscles almost to the bone where the cream somehow can't reach), I used two NSAID pain meds, and laid on a heating pad crying for 3 out of those 4 hours.

I can barely pick up things without pain from my shoulders, I feel like my neck can barely support my head. I'm just feeling hopeless about ever getting a diagnosis, the doctor straight up said she has no clue why this is happening. We're trying another MRI of my cervical spine again.

I don't really feel like I have anyone to talk to about the pain, because although I know my husband hears me, I know he can't truly "get it" because he doesn't feel the pain like I do. I just felt that maybe putting all of it that I can remember right now on here may just help me feel heard.
 
#2
I can barely pick up things without pain from my shoulders, I feel like my neck can barely support my head. I'm just feeling hopeless about ever getting a diagnosis, the doctor straight up said she has no clue why this is happening. We're trying another MRI of my cervical spine again.
You might want to look in to EDS, because that's exactly how I would describe the shoulder pain, and that my neck can't support. Because it's a collagen deficiency (there are 5 or 6 types), it can effect ligaments (between muscle and bone), organ cushioning, skin integrity, +/or medium and large blood vessels. Because of dislocations and injuries (you didn't mention) early onset arthritis also sets in. The genetic test is conclusive.

I've also had that with a thoracic level vertebrae, where I lose strength in my arms or can't lift them without much warning, though thankfully that degree has been rare. Seems 'out', is all I can guess. But I've also moved my shoulder a certain way, and it just drops me to my knees, can't move, sore chest, very disturbing (also thankfully rare). PT totally useless for me, a great Chiropractor a Godsend.

Hope you cab get some relief soon. 🤗
 
#3
At the start of this year, I finally relented to persistent medical advice and went to a musculoskeletal physician about chronic (and really gawdawful) shoulder and neck muscle pain.

In my case, it's finally been diagnosed as fibromyalgia (the problem is all over, but not being able to use my arms was becoming really dysfunctional). But my pdoc commented that our shoulders are the first place our bodies like to store up tension, so chronic shoulder and neck pain are super common with ptsd.

Doesn't mean you need to be putting up with it. Getting it properly diagnosed, so you can treat it (or, more likely, throw the right kind of exercise at it) to give you some relief would definitely be worth the investment.
 
Thread starter #5
You might want to look in to EDS
I'll talk to my doctor the next time I see her (on Monday). I'll ask her about it. She seems to think I have some sort of immune disorder, but every blood test she's ordered doesn't show any markers.

At the start of this year, I finally relented to persistent medical advice and went to a musculoskeletal physician about chronic (and really gawdawful) shoulder and neck muscle pain.

In my case, it's finally been diagnosed as fibromyalgia (the problem is all over, but not being able to use my arms was becoming really dysfunctional). But my pdoc commented that our shoulders are the first place our bodies like to store up tension, so chronic shoulder and neck pain are super common with ptsd.

Doesn't mean you need to be putting up with it. Getting it properly diagnosed, so you can treat it (or, more likely, throw the right kind of exercise at it) to give you some relief would definitely be worth the investment.
Thanks. I'm wondering if I should be asking to go to a specialist for awhile now that isn't a pain management specialist or a physical therapist (because it's not helping). Dry needling with physical therapy helped the most, and my doctor said I may just have to get routine dry needling done? I've never heard of that happening before, and my insurance caps my PT prescription visits at I think 20 per fiscal year.

Yep yep.

I’m a bit of a mess... 20 some odd years and counting. I’m mostly held together with duct tape and stubbornness and wishful thinking ;)
Sometimes I feel like I'm held together that way, too. I'm in a better place than I was 6 years ago, but the pain was as bad as it was before I started treatment and it dragged my emotions down with me. Sometimes I feel like I'm making progress and getting better, then I get a day like that and fall apart and I'm like "Well... feels like I'm right back where I started."

It just feels like the progress is hard-won and fought for only to be so easily lost by a day of inappropriate sitting or I tried to actually get some proper exercise (I used to be a runner, and I can't now because of the shoulder/neck issues being exacerbated by the running, figure that one out 😉😂).
 
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