I’m too physically limited for range of mobility like this. I can’t seem to find anyone that can diagnose what is actually wrong with my spine. It is in a rare region and complex. Nothing major comes up in a radiologist’s MRI report, and neurosurgeons all come with a severe legislatively induced allergy to anything complicated to diagnose or work on. Of 13, only one spent the time to get into the weeds and it was only to make up a legally plausible narrative reason to claim I needed several fusions. They only took the time because they were about to lose their license for malpractice (something I had no clue about at the time). There is no such thing as a House like spinal doctor that will observationally diagnose a person regardless of their ability to treat or the risk involved. If they diagnose the issue they will face subpoenas and lots of time wasted to bureaucratic nonsense. The only options appear to be paying several thousand dollars for a shady lawyer that can bribe their way through the hoops of capitalist privateers or homelessness/suicide. This is Los Angeles where there are 100k homeless within 100 miles of where I lay. There are no available social workers, and every shelter is beyond full. Even the homeless that try to group to help each other are attacked like rabid feral animals by orders of the criminal Newsom. I need a more effective plan.
I’m sorry you’re going through all that, I’m living in LA and also disabled from spinal issues so I’ve experienced a lot of what you’re talking about as well. I’ve basically resigned myself to ‘smoke weed all the time’ being the extent of medical management of my pain, because doctors can’t/won’t do anything else for me without potentially making other problems worse. Back problems are awful and not having any concrete answers is just about as bad.
What part of LA are you in, roughly, if you’re OK sharing? If you’re able to ride public transit I’d be happy to search around to try to find more resources near you.
In addition to getting arrested being dangerous, sleeping on a jail cot is probably going to be absolutely godawful for your back, at least as bad as sleeping in a doorway. If you’re sleeping on the ground outside you at least have some control over your environment, compared to jail.
Thanks. I’m in south OC and not in any present danger or state of mind. I was just denied disability for the second time in 4 years and trying to talk myself into mental options available beyond lead or fentanyl as my ultimate outcome.
Holding posture for longer than an hour has cascading repercussions that last days to weeks. If I am upright, ie. sitting or standing, I am hurting. After around an hour of endurance, I will be unable to sleep well enough to recover. I barely ever sleep six hours a day at most and even that is rather low quality. I turn into a zombie if this lasts for more than a week or so. At that point I start showing signs of severe sleep deprivation and mental instability typical of any human in such a state. My entire life revolves around avoiding this state. I have plenty of money and security for now, but no way to effectively support myself long term. I’m well above average and mentally capable, but I go through periodic ups and downs that are unpredictable. Stupid minor things can injure me. The lows disconnect me from a professionally competent state of mind, and I’m generally irritable enough to not be very pleasant to be around in person. I want to be, and be myself, but the best way to put it is that my pain is constant and like living with a neighbour that always plays annoyingly loud music; EVERYTHING I do is forced to shout over that noise. It is like my internal voice is shouting over that noise and I must listen carefully to hear it. Sometimes it is just too noisy and hard to focus past it. When I am upright holding posture in any way, the noise is slowly getting louder. In physical terms, it feels like I give you a 1lb dumbbell and tell you to hold it at shoulder height with your arm fully extended–easy… at first…but try doing it for an hour. I’ve stubbornly pushed WAY past it to prove to myself it is not a mental thing. I was on the floor of a restaurant writhing in sharp shooting pain when a long time friend came to visit. I didn’t sleep for days and took almost 2 months to recover to the point of sleeping 6 hours for the first time.
I’m sorry dude, I’ve had a lot of family members go through the wringer trying to get disability as well. The one and only person I’ve ever known to get it first try was dying of cancer. The system is made to make people give up when they’re least able to fight it, it’s sickening.
I’m not familiar with any of OC so I’m not going to be any more helpful than a Google search on that front. But oh man, do I hear you on what the lack of sleep from pain does to you. I feel lucky I’m able to get 6-7 hours most nights, minus time spent waking up and trying to get comfortable. Thank fuck Ikea makes comparatively inexpensive foam mattresses. If you aren’t on gabapentin already, it helps with nerve pain and makes a decent sleep aid.
Are you familiar with the idea of pacing? It’s a strategy recommended for patients with ME/CFS to prevent triggering relapses, and I’ve found those ideas to be a useful way to manage chronic pain as well, on the preventative end.
Good luck man, I’ve been dealing with this shit for over half my life at this point. It sucks and it’s hard and it’s not fair and we might actually be living in one of the worst countries to be dealing with chronic medical issues. If you feel like wanting to scream and beat someone bloody over it, well, to me that’s pretty understandable.
My symptoms are similar to yours, if not quite so bad. I can’t walk more than about 50 yards, or stand for more than 10-15 minutes. I have tried for disability after my physical issues made me quit my job (after a couple of decades being a teacher for the same school district). I moved back in with my parents. Sucks to be in my 50s and stuck like this, but at least I have a roof over my head. I’m in north OC. There is zero help until you run out of all options and all money. It’s really fucked up. Good luck.
I have nerve issues. My nerves just move around, usually due to an injury, but not always. Never had a doctor diagnose me properly. They wanted to fix my knee cap surgically or tell me that my pelvis moves. If I bend, or sleep, or lift the wrong way something moves. I can’t keep a bent position very long, and sometimes my knee just randomly hurts after walking. Sometimes I get shooting pains in my elbows.
I know this sounds ridiculous, but, finally I got word of a guy from mexico, he was really old and most likely dead by now, but he was known as a massage healer. He would zero in on the spot and just work his magic. After going back a few times, it would stay mostly stay in place. I did have to exercise a bit (walking was enough) so the muscles would keep the nerve in place, but I could do so pain free.
Either way, I got too lazy and of course the pain came back. I’ve been to a couple other people who claim to do what he did, but its never worked the same. Closest anyone ever got to keeping me pain free for any amount of time, was a sports masseuse.
I don’t know if you’ve ever heard of someone in your area like that, but it might be worth a shot. He would tell stories of how he helped all sorts of people with all sorts of aliments. This guy was well known in the Hispanic community, and people would come from other states just to see him, for all sorts of issues. If someone like this exists around you, they should be too hard to find if you ask the right people. Worst that can happen is you get a massage.
I’m too physically limited for range of mobility like this. I can’t seem to find anyone that can diagnose what is actually wrong with my spine. It is in a rare region and complex. Nothing major comes up in a radiologist’s MRI report, and neurosurgeons all come with a severe legislatively induced allergy to anything complicated to diagnose or work on. Of 13, only one spent the time to get into the weeds and it was only to make up a legally plausible narrative reason to claim I needed several fusions. They only took the time because they were about to lose their license for malpractice (something I had no clue about at the time). There is no such thing as a House like spinal doctor that will observationally diagnose a person regardless of their ability to treat or the risk involved. If they diagnose the issue they will face subpoenas and lots of time wasted to bureaucratic nonsense. The only options appear to be paying several thousand dollars for a shady lawyer that can bribe their way through the hoops of capitalist privateers or homelessness/suicide. This is Los Angeles where there are 100k homeless within 100 miles of where I lay. There are no available social workers, and every shelter is beyond full. Even the homeless that try to group to help each other are attacked like rabid feral animals by orders of the criminal Newsom. I need a more effective plan.
I’m sorry you’re going through all that, I’m living in LA and also disabled from spinal issues so I’ve experienced a lot of what you’re talking about as well. I’ve basically resigned myself to ‘smoke weed all the time’ being the extent of medical management of my pain, because doctors can’t/won’t do anything else for me without potentially making other problems worse. Back problems are awful and not having any concrete answers is just about as bad.
What part of LA are you in, roughly, if you’re OK sharing? If you’re able to ride public transit I’d be happy to search around to try to find more resources near you.
In addition to getting arrested being dangerous, sleeping on a jail cot is probably going to be absolutely godawful for your back, at least as bad as sleeping in a doorway. If you’re sleeping on the ground outside you at least have some control over your environment, compared to jail.
Thanks. I’m in south OC and not in any present danger or state of mind. I was just denied disability for the second time in 4 years and trying to talk myself into mental options available beyond lead or fentanyl as my ultimate outcome.
Holding posture for longer than an hour has cascading repercussions that last days to weeks. If I am upright, ie. sitting or standing, I am hurting. After around an hour of endurance, I will be unable to sleep well enough to recover. I barely ever sleep six hours a day at most and even that is rather low quality. I turn into a zombie if this lasts for more than a week or so. At that point I start showing signs of severe sleep deprivation and mental instability typical of any human in such a state. My entire life revolves around avoiding this state. I have plenty of money and security for now, but no way to effectively support myself long term. I’m well above average and mentally capable, but I go through periodic ups and downs that are unpredictable. Stupid minor things can injure me. The lows disconnect me from a professionally competent state of mind, and I’m generally irritable enough to not be very pleasant to be around in person. I want to be, and be myself, but the best way to put it is that my pain is constant and like living with a neighbour that always plays annoyingly loud music; EVERYTHING I do is forced to shout over that noise. It is like my internal voice is shouting over that noise and I must listen carefully to hear it. Sometimes it is just too noisy and hard to focus past it. When I am upright holding posture in any way, the noise is slowly getting louder. In physical terms, it feels like I give you a 1lb dumbbell and tell you to hold it at shoulder height with your arm fully extended–easy… at first…but try doing it for an hour. I’ve stubbornly pushed WAY past it to prove to myself it is not a mental thing. I was on the floor of a restaurant writhing in sharp shooting pain when a long time friend came to visit. I didn’t sleep for days and took almost 2 months to recover to the point of sleeping 6 hours for the first time.
I’m sorry dude, I’ve had a lot of family members go through the wringer trying to get disability as well. The one and only person I’ve ever known to get it first try was dying of cancer. The system is made to make people give up when they’re least able to fight it, it’s sickening.
I’m not familiar with any of OC so I’m not going to be any more helpful than a Google search on that front. But oh man, do I hear you on what the lack of sleep from pain does to you. I feel lucky I’m able to get 6-7 hours most nights, minus time spent waking up and trying to get comfortable. Thank fuck Ikea makes comparatively inexpensive foam mattresses. If you aren’t on gabapentin already, it helps with nerve pain and makes a decent sleep aid.
Are you familiar with the idea of pacing? It’s a strategy recommended for patients with ME/CFS to prevent triggering relapses, and I’ve found those ideas to be a useful way to manage chronic pain as well, on the preventative end.
Good luck man, I’ve been dealing with this shit for over half my life at this point. It sucks and it’s hard and it’s not fair and we might actually be living in one of the worst countries to be dealing with chronic medical issues. If you feel like wanting to scream and beat someone bloody over it, well, to me that’s pretty understandable.
My symptoms are similar to yours, if not quite so bad. I can’t walk more than about 50 yards, or stand for more than 10-15 minutes. I have tried for disability after my physical issues made me quit my job (after a couple of decades being a teacher for the same school district). I moved back in with my parents. Sucks to be in my 50s and stuck like this, but at least I have a roof over my head. I’m in north OC. There is zero help until you run out of all options and all money. It’s really fucked up. Good luck.
I have nerve issues. My nerves just move around, usually due to an injury, but not always. Never had a doctor diagnose me properly. They wanted to fix my knee cap surgically or tell me that my pelvis moves. If I bend, or sleep, or lift the wrong way something moves. I can’t keep a bent position very long, and sometimes my knee just randomly hurts after walking. Sometimes I get shooting pains in my elbows.
I know this sounds ridiculous, but, finally I got word of a guy from mexico, he was really old and most likely dead by now, but he was known as a massage healer. He would zero in on the spot and just work his magic. After going back a few times, it would stay mostly stay in place. I did have to exercise a bit (walking was enough) so the muscles would keep the nerve in place, but I could do so pain free.
Either way, I got too lazy and of course the pain came back. I’ve been to a couple other people who claim to do what he did, but its never worked the same. Closest anyone ever got to keeping me pain free for any amount of time, was a sports masseuse.
I don’t know if you’ve ever heard of someone in your area like that, but it might be worth a shot. He would tell stories of how he helped all sorts of people with all sorts of aliments. This guy was well known in the Hispanic community, and people would come from other states just to see him, for all sorts of issues. If someone like this exists around you, they should be too hard to find if you ask the right people. Worst that can happen is you get a massage.