Posted 12/31/2021 4:57 PM (GMT 0)
Sorry, this one's long. There is no tl;dr.
New here, just reaching out as a method of 'turning over another stone' in my never-ending search for answers. I am ... sadly very pessimistic about being able to find any help at this point, but I will try anyway.
I am in a moderate-to-severe (can change day by day) amount of chronic shoulder pain, have been for 25 years: started when I was 12, I am 37 now. I have a deep discomfort in my right armpit area, and tenseness of muscles that compels me to move my arm around in unsuccessful attempts to do anything about it. I also have a permanently inflamed rotator cuff on the same side, so when I do move my arm around to deal with the other pain, I am sometimes rewarded with a pain sensation akin to knives being plunged into my arm from above.
I do not know what actually caused this to start, as symptoms gradually built up over the course of a few years. My best guess is a biking accident I had when I was 12, where I flew off a path at high speed and collided with a tree. (The tree was frail and sickly and broke my fall, rather than completely breaking me.) I had no apparent injuries at the time, and just continued biking, problems set on later.
As for what's actually causing the pain in my underarm, well, I also ... don't know. I saw whole teams of doctors over the past couple years, and determined that I have the following wrong with me:
- After MRIs/MRNs of my spine, the list of individual things wrong with my spine goes on for 4 pages. Herniated this, fused that, cracked something-or-other over there. The most alarming of these problems are two discs, one in my cervical and one in my thoracic, which partially herniated, died, and turned into solid bone. Ossification they called it, which apparently happens in .003% of patients with spine problems.
- Partially trapped brachial-plexus nerve
- Swollen bone marrow in my right shoulder (I didn't know that was a thing that could happen)
- Right biceps is inflamed
- Permanently inflamed rotator cuff (that explains the other pain when I move, not the underarm stuff)
- My first rib on my right side is jammed upwards towards my shoulder (docs said this wasn't doing anything to me. I am currently skeptical)
- Formation of intra-muscular scar tissue all over the place in that general region.
- The tendons on my arm did not grow properly, resulting in a kind of a 'claw hand' where I can't extend my fingers out.
---
However, the pain isn't my major problem. Pain is pain, eventually you ... sort of get used to it. (Sort of.)
What I don't get used to, not ever, is the fact that the pain interrupts my sleep every single night.
I am a big guy - 6'2" - and I think I would ideally need 8 hours of sleep. That has not happened once over these 25 years. My average night is 4 hours of sleep. At worst, I sleep 30 minutes to 2 hours at night. If I get 5-6 hours I can get through my day as a Minimally Viable Human, as long as I have enough coffee.
Occasionally, by some sort of miracle, I will sleep 7 hours in one go, and I end up feeling like I've unlocked some crazy superpower compared to how I usually feel. Unfortunately, I can reliably count on one hand the number of times this happens in a single given year (and I usually don't need the the whole hand).
To put this in better perspective: I have seen some doctors say that sleep is cumulative. In total, since I was 12, I have lost out on over 6 years of total sleep. I don't actually know how I'm still alive at this point, as I figured that amount of sleep lost would, you know, kill you eventually. Like I should be overdue for my brain just having multiple aneurisms or something at this point. But I guess it doesn't.
Without getting into psychological detail, let's just sum up and say that this has ruined my life and is continuing to do so. I am functionally a shambling Corpse-Person most the time due to sleep loss, and I am very ready for life to just be over at this point.
Now then, for the pain/sleep, I have tried/am trying:
- Tylenol PM - 2 at night helps me more reliably fall asleep through the pain though I do always wake up during the night.
- Hugging a tennis ball. This is a weird one that I came up with on a whim, but clamping my arm around a tennis ball or a golf ball when I'm trying to relax for sleep provides some relief for my underarm area. Sometimes.
- Massage therapy: Actually reduced pain permanently when I was younger, but has had no lasting effect beyond that since then. Not a full cure. I also do self-message as needed to try and help but with no lasting results.
- Acupuncture: did nothing
- Physical therapy: everything they did makes pain worse. I actually think my rotator cuff problems started because of physical therapy.
- TENS units - those things where you strap pads onto yourself and electrocute yourself. Does nothing.
- Exercise:
--- Doctors have told me I should never lift more than 10lbs. (Try using that as a pick-up line...) In the past, when trying to work out or move furniture, over the course of the following week my pain/discomfort would go from 'man this is annoying' to 'I think stabbing myself in the throat would be less painful.'
--- Oddly enough, kayaking kind of makes my arm feel nicer, I think. Not really in season right now though.
--- Oddly enough, just using a rowing machine makes my arm feel worse. (????????)
--- I did lots of swimming when I was younger, when the problem was at its worst. Did nothing.
--- Literally going for a very long walk can cause pain to increase. (We're talking 5+ miles though)
- Opiates - I lost a younger brother to substance abuse a couple years ago. I refuse to even consider this option. The pharma world sets you up to die.
- Spinal injections. Tried it three times over. Does nothing.
- Hydro-dissection - this was targeted at my intramuscular scar tissue, basically shoving a needle into my muscles and power-washing my muscles to get the scar tissue off. Provided relief for a week or so when I first started doing it. Never permanent relief.
- Hemp/CBD supplements - basically weed minus the stuff that makes you high. Currently trying, but does nothing.
- Hemp pain relief roll-on - currently testing. Causes a weird sensation of cold in my armpit area. Doesn't affect other pain (rotator cuff etc). Will keep trying
My problems have stumped every doctor I've seen. My last doctor actually told me that my brain has probably just 'learned to be in pain' at this point and that there's no cure.
Additionally, I've also been recently developing problems in my right leg (like over the past year) - no pain in the day, really, but I can't stop popping my right hip joint while I'm trying to get to sleep. Starting to bug me as much as the arm. I am relatively clueless about what my leg problem is.
If anyone has any insights, similar experiences, or suggestions on something I might try, then I would appreciate it. Thanks.