Other Chronic Pain

Chitoshi

MyPTSD Pro
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.
 

Rosebud

MyPTSD Pro
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. ?
 

Sideways

Sponsor
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.
 

Chitoshi

MyPTSD Pro
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 ??).
 

Mach123

MyPTSD Pro
Hi, I was going to start a thread but here it is with my exact title. I’m in awful pain starting in my left wrist where there is no cartilage and my left which is better. Then it radiates out and sometimes I feel absolutely crippled. Then other times I forget it for awhile. I got the shots six months ago and I was pain free for about four months. Then it started coming back. I got the shots again two months ago and they just didn’t work. I called the doctor Friday and left a message like what happened? It’s helping keep me awake at night and I’m tossing and turning trying to get it comfortable and rubbing it and stuff. There’s quite a bit of swelling. Advil’s don’t work. Aspirin helps. It’s awful. I use pot so I suppose next time I go to a pot store I can ask for a pain strain but I don’t think the strains are so different or very effective (my opinion)
 

RussellSue

MyPTSD Pro
It's hard. I'm fighting with pain, as usual, as well but it is improved from this time last year. Fibromyalgia, hip dysplasia, impingement and arthritis, 2 herniated discs, joint hypermobility syndrome and chronic shoulder and lower limb tendinitis and more BUT my PT last year said that none of this explained the pain level I described even though both of my hip labrums (labri??) were torn at the time. I was having regular level 7-8 pain daily with spikes above that. It was nuts.

I wonder about childhood medical trauma - is that amplifying my sensations of pain? I don't know. I am sick of it; I know that.

My husband is a teacher. I have zero comprehension of how one could be an educator full-time while battling serious chronic pain. It seems like an almost superhuman expectation. I am not meaning to sound negative but I know damn well I could not do it even with the norm being level 4 or 5 pain - not crying pain.

I hope you are able to unravel some mystery and get some relief. I am sorry you are going through this.
 
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RussellSue

MyPTSD Pro
Have you tried using a posture corrector brace? I use one when I have to sit at the computer and it helps my shoulders and neck quite a bit. If it happens to be some level of joint hypermobility, braces are really helpful. I have them for my back, ankles, shoulders and so on and use them when I know I will be putting a lot of strain on those parts of my body. Sitting at a computer puts a lot of strain on the shoulders and neck - just a thought.
 
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gealach

MyPTSD Pro
Lots of previous injuries and a neverending inflammatory response = chronic pain for me. Once something gets inflammed, it stays that way for years. When I say I have no pain, I really just mean it's tolerable. I was diagnosed with CRPS after the last arm injury in 2017.

I'm anaphylactic to NSAIDs, can't metabolize codeine, and am hypersensitive to opiates, so I have only tylenol for pain control - it doesn't do much. Lol I'm allergic to adhesive, so even K tape is a limited option. I found that turmeric has worked well as an anti-inflammatory and has helped a lot with the daily pain (not the flare ups), but have had to cut it to every 2nd or 3rd day because it's an anticoagulant and an antiplatelet and I had bruises bigger than my hand and I'm chronically anemic, so a trade off between pain vs bleeding.

Driving and sitting at computers are the worst for me. Driving irritates my shoulder, and radiates into my neck and upper back until I'm in agony. Computer does the same thing, and also irritates the elbow and wrist, and with 2 finger deficits my hand and forearm cramp, and my optic nerve feels like it's a knife stabbing into my brain and my vision goes blurry. Nothing I can do or take for any of that, just suffer until it comes down.

People don't get it. At best they can empathize to a degree, at worst they think it's exaggeration or low pain tolerance (aka you're a wimp), or all in my head (until CT or MRI shows there's injury and inflammation, and they have to eat crow). Similar trajectory with PTSD.
 

Still Standing

MyPTSD Pro
Geesh! Everyone who responded, here, has pain I can relate to. I've put up with pain since in 2nd grade. It has been a long arduous journey finding doctors who were able to figure out why I hurt. Some simply told me I was exaggerating and could find no cause. After many, many years, it was found that I had a spinal deformity, probably born with it, that is commonly overlooked until one is an adult. That was finally diagnosed when I became partially paralyzed. Since then, I've been told that I had Fibromyalgia and Chronic Pain syndrome with the decision to focus on the chronic pain. I, too, have secondary CRPS in my foot. The list goes on and on.

All this to say, that pain begets pain. It causes a chain reaction in our muscles. Add in a good dose of worry or emotional upset and our muscles tighten more. After time, our muscles learn to automatically tighten up as a form of "bridging" to prevent pain. So, one may have a physiological reason for pain but the learned responses to it add more discomfort, making diagnosis difficult, sometimes. Have your tried deep muscle massage and dry needling (similar to accupuncture)? These may help. Also, using a muscle relaxant is useful, too. And, a heavy strength of CBD oil may prove a good resource to use, too.

I am sorry you are hurting so badly. It is a tough road to walk. But, be diligent. Keep researching and looking for a doctor who might be able to figure out your problem. It took me until I was 45 years old before the reason for my pain was found. Today, I am 70, and I still live in chronic pain. But, the pain is much more tolerable as surgeries have been done to alleviate some of the problems I have. I will say, that you will learn how to tolerate levels of pain. Just when you think you can't take it anymore, you will even out a little. And as stupid as this may sound, attitude has a huge influence on pain. I discovered that if I could keep laughing and looking above and beyond it all, I could navigate daily life better. But, the moment I navel-gazed at my situation and gave in to it, the pain was intolerable. Living with pain is a balancing act. It is hard and discouraging, for sure. But, there is a reason for what you go through and it takes determination to fight for yourself and find help. I hope you find answers to your pain.
 

Mach123

MyPTSD Pro
Hi my orthopedist put me on Celebrex and Voltaren which is a topical creme. It takes me awhile always but I was really in pain this morning and I took one pill 100 mg. I just got the creme it just recently became available over the counter . Right now I feel pretty good. I’m on the couch . Idk if I’d be up if I had not taken one . We will see lol. But I was in really severe pain and steadily worsening so, I’m thinking anything is going to be an improvement.
 
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