schopenh
Specialist
- Oct 21, 2019
- 385
I've been in very severe chronic pain for about 3.5 years now. But the interesting thing is that the problem I started out with that brought me to this site is no longer my biggest issue.
About 3.5 years ago (when I was 26) I injured my back and this lead to two issues: intense mechanical pain in my spine that made standing extremely difficult and sitting impossible; as well as an intense and overwhelming burst of radicular pain into both legs, front and back, with pain worse on the left side. I need to make this clear: this was orders of magnitude greater than typical lumbar radiculopathy (which can itself be very, very painful) - it had nothing to do with stenosis/herniated disc/impingement/annular tears/leaking discs/tumors etc. etc. Whatever happened was incredibly rare and had no medical explanation with current investigative procedures and wasn't even analogous to any known auto-immune disorder (or other problem) which can cause neuropathy.
The only thing of note from all the testing was a moderately diseased inter-vertebral disc; it couldn't explain the neurological pain though. Nonetheless I paid to have the disc removed and replaced with my life savings.
Before continuing, basically for an entire 10 months I was completely bed bound. I was lying on my back or side for 10 months straight. I developed very strong chest pain which stung and burn intensely at times and also it would affect my upper back. I had no idea it was caused by the lying down until later when I got back the ability to sit.
So, the disc replacement fixed the mechanical issues, I could sit and stand again without lumbar spine pain, but the disease process in my nerves that was kickstarted with the injury wasn't fixed. I had way more diagnostics, procedures etc. to try help the nerve pain but nothing did, even an iota. So I have had constant stinging and burning in my lumbar spine with pain radiating into my legs for the past 3.5 years. Eventually I got fasciculations in both legs as well and my left foot began to feel much warmer than the right and it dries up if I don't moisturize every day (classic signs of autonomic nerve damage). Had loads more tests, yet still no answers (and lots of money down the drain). I have been housebound this entire time as any activity or physical rehab, no matter how small and careful, just makes pain worse.
Overall, that nerve pain maybe went down by 50% in the entire 3.5 years since it started. It is still severe though and I cannot wear trousers as the sensation makes the pain worse.
Anyway, since I could sit again the chest pain improved a lot. But basically I still couldn''t lie on my side anymore. I would wake up with intense pain in the sternum if I did. Even if I did it for ten minutes I'd get pain. If for some reason I lay on my back in an odd position, it could also trigger it. I guess it's 'costochondritis' but I never even bothered having it diagnosed as it's insignificant compared to the nerve pain and what else is to come. Plus, surprise, surprise, there's not meaningful treatment for it anyway (there never is for anything I get landed with it seems). I'm very, very tired of going through scans and bloods etc.
Four months ago I developed extreme pain in my urogenital system. It worsens dramatically with orgasm but it is severe even without it. My need to pee is now every hour minimum, this is at night as well. While I already struggled with sleep, if I could get asleep I would usually stay as asleep for a few hours. Now I'm waking up every hour because the sensation to pee and pain gets too strong.
I figure this all came about due to abdominal area surgery and the damage and scar tissue it left (to access my lumbar spine they went through the front), months of oral corticosteroids at very high dosages, inactivity, other meds (antibiotics during surgery, antibiotics when we though the problem was a UTI - didn't test for bacteria initially due to covid, antiepileptics, antidepressants, stomach liners with the steroids, others...) and presumably some genetic factor or perhaps whatever disease has caused my nerves to not heal near my spine has moved around to my bladder.
Right now the urogenital problem is the worst issue. I am completely avoiding orgasming but after a few weeks I will end up having a nocturnal emission and it makes the pain much, much worse. I am peeing all the time and the burning and stinging pain in the area is very intense. It seems to be worsening rather than getting better. Movement badly irritates the area and I cannot twist or turn or stretch the area at all.
Sounds like it's a disease called interstitial cystitis which just has a load of nonsense treatments that don't help and is basically incurable and spontaneously resolves for some lucky individuals. My presentation seems to be very severe. I have been on a list for an ultrasound for about 3 weeks now (this is private), but I haven't heard from them. I really just don't even care because I doubt it will show anything. I'm also on a four year waiting list to see a urologist but again, I just don't even care about seeing them. I imagine they'll do a cystoscopy and a couple of procedures, offer elmiron and none of it can reasonably be expected to do anything.
So, you can see how chronic pain just causes more chronic pain. The inactivity lead to my chest problem (which is quite minor and livable with on its own). And all the meds etc. opened up a new problem that's worse (at the moment) than the problem I started out with.
I'm really, really tired of severe pain and disability. I seemingly don't have a suicidal bone in my body though because I've had everything I need to CTB since last October.
Edit: thanks to anyone who actually bothered to read all this
About 3.5 years ago (when I was 26) I injured my back and this lead to two issues: intense mechanical pain in my spine that made standing extremely difficult and sitting impossible; as well as an intense and overwhelming burst of radicular pain into both legs, front and back, with pain worse on the left side. I need to make this clear: this was orders of magnitude greater than typical lumbar radiculopathy (which can itself be very, very painful) - it had nothing to do with stenosis/herniated disc/impingement/annular tears/leaking discs/tumors etc. etc. Whatever happened was incredibly rare and had no medical explanation with current investigative procedures and wasn't even analogous to any known auto-immune disorder (or other problem) which can cause neuropathy.
The only thing of note from all the testing was a moderately diseased inter-vertebral disc; it couldn't explain the neurological pain though. Nonetheless I paid to have the disc removed and replaced with my life savings.
Before continuing, basically for an entire 10 months I was completely bed bound. I was lying on my back or side for 10 months straight. I developed very strong chest pain which stung and burn intensely at times and also it would affect my upper back. I had no idea it was caused by the lying down until later when I got back the ability to sit.
So, the disc replacement fixed the mechanical issues, I could sit and stand again without lumbar spine pain, but the disease process in my nerves that was kickstarted with the injury wasn't fixed. I had way more diagnostics, procedures etc. to try help the nerve pain but nothing did, even an iota. So I have had constant stinging and burning in my lumbar spine with pain radiating into my legs for the past 3.5 years. Eventually I got fasciculations in both legs as well and my left foot began to feel much warmer than the right and it dries up if I don't moisturize every day (classic signs of autonomic nerve damage). Had loads more tests, yet still no answers (and lots of money down the drain). I have been housebound this entire time as any activity or physical rehab, no matter how small and careful, just makes pain worse.
Overall, that nerve pain maybe went down by 50% in the entire 3.5 years since it started. It is still severe though and I cannot wear trousers as the sensation makes the pain worse.
Anyway, since I could sit again the chest pain improved a lot. But basically I still couldn''t lie on my side anymore. I would wake up with intense pain in the sternum if I did. Even if I did it for ten minutes I'd get pain. If for some reason I lay on my back in an odd position, it could also trigger it. I guess it's 'costochondritis' but I never even bothered having it diagnosed as it's insignificant compared to the nerve pain and what else is to come. Plus, surprise, surprise, there's not meaningful treatment for it anyway (there never is for anything I get landed with it seems). I'm very, very tired of going through scans and bloods etc.
Four months ago I developed extreme pain in my urogenital system. It worsens dramatically with orgasm but it is severe even without it. My need to pee is now every hour minimum, this is at night as well. While I already struggled with sleep, if I could get asleep I would usually stay as asleep for a few hours. Now I'm waking up every hour because the sensation to pee and pain gets too strong.
I figure this all came about due to abdominal area surgery and the damage and scar tissue it left (to access my lumbar spine they went through the front), months of oral corticosteroids at very high dosages, inactivity, other meds (antibiotics during surgery, antibiotics when we though the problem was a UTI - didn't test for bacteria initially due to covid, antiepileptics, antidepressants, stomach liners with the steroids, others...) and presumably some genetic factor or perhaps whatever disease has caused my nerves to not heal near my spine has moved around to my bladder.
Right now the urogenital problem is the worst issue. I am completely avoiding orgasming but after a few weeks I will end up having a nocturnal emission and it makes the pain much, much worse. I am peeing all the time and the burning and stinging pain in the area is very intense. It seems to be worsening rather than getting better. Movement badly irritates the area and I cannot twist or turn or stretch the area at all.
Sounds like it's a disease called interstitial cystitis which just has a load of nonsense treatments that don't help and is basically incurable and spontaneously resolves for some lucky individuals. My presentation seems to be very severe. I have been on a list for an ultrasound for about 3 weeks now (this is private), but I haven't heard from them. I really just don't even care because I doubt it will show anything. I'm also on a four year waiting list to see a urologist but again, I just don't even care about seeing them. I imagine they'll do a cystoscopy and a couple of procedures, offer elmiron and none of it can reasonably be expected to do anything.
So, you can see how chronic pain just causes more chronic pain. The inactivity lead to my chest problem (which is quite minor and livable with on its own). And all the meds etc. opened up a new problem that's worse (at the moment) than the problem I started out with.
I'm really, really tired of severe pain and disability. I seemingly don't have a suicidal bone in my body though because I've had everything I need to CTB since last October.
Edit: thanks to anyone who actually bothered to read all this
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