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Thread: Back pain

  1. #1

    Back pain

    Boy, I really got the short end of the stick with breaking my neck. First, I'm a quad. Okay, I can handle that, my arms move even enough where I can push my own chair around. Second, I start getting seizures which of course relates to epilepsy. Where the hell did that come from. Oh yeah, I fractured my skull when I was 15 and nevermind how, it's embarrassing. Okay, massive concussion of course. Next, My left hip start hurting so it's extremely painful to lay on it for more than half an hour. Okay, so I sleep on my back mostly at night. I lay flat so there's no high-pressure anywhere. I get a few sores mostly my fault for not recognizing a flat cushion I guess. What a bummer. That lands me in bed quite a bit so I can laying on the right side a lot which is okay for a while. Since at the time I lived alone I slept on my back overnight and was able to raise the head and the feet of my bed, hook my arms on the bed rails, lean forward in bed and slide myself back in bed to be more comfortable since I was slouched until one day my left hand slipped off the bed rail, my right arm held me on the bed while my head hung off the side of the bed and then I slowly slipped off the bed with my arm still hooked on the bed rail at 7 AM and my caregiver didn't come in until 10 AM so wham, I messed up a bunch of stuff in my shoulder and now my shoulder hangs kind of low (which I think is kind of from laying on my right side all the time because my left hip hurt and him him him him him so I could see my TV at home when I had caregivers there) but it still builds up strength again, even enough where I could get some strength back, enough to move my manual chair around again pretty quickly enough to the point where my caregivers had to do some speed walking to keep up with me in the mall or something like that. Now my lower back is in massive pain when I'm in bed in any position except for sitting straight up (which recently doesn't make much of a difference). It feels great when I get it massaged down there. Does that make me suddenly incomplete? So anyways the only position I'm comfortable in his in my chair and of course I've got another little sore so I can't be up in my chair to too long (the sore is on my trochanter and their zero pressure there so don't freak out. I had it checked while getting pressure mapped). It gets better than it gets worse then it gets better than it gets worse and it's only skin deep so I'm careful with what I wear making sure there's no pressure from that. Now I'm in a power chair that does the tilt in air thing so I can do really good weight shifts to get all the weight off my butt, and of course with this wonderful crappy diet they have here at my facility I've done a pregnancy at times (I swear it's going to be twins). My back hurts so bad there's a couple of nights and have almost called the paramedics. They've done x-rays and I guess there's nothing wrong with it so I'm waiting to find out if I can get a pain stimulator implanted (I've already got baclofen pump and I used to have pain meds in it but they made me really stupid) so then I'll have a fresh device underneath my skin to poke out. So now what? Percocet helps a little but also tends to knock me out lately. We tried a nerve block which helped for a couple days (the best years of my life recently) but of course it all came back. This is getting brutal and I'm running out of patience getting this fixed. I just want a day without pain. My central pain is already pretty bad even much worse on some days and some days I'm ready to drive my chair into a swinging pool.
    C-5/6, 7-9-2000
    Scottsdale, AZ


  2. #2
    Senior Member Cowboys_Place's Avatar
    Join Date
    Dec 2005
    Northern California

    Sorry to hear you're having more trouble, reading through your post you've had enough problems for 10 people! I really don't understand how life can be so cruel and unfair it's a continuous battle to keep going most of the time. I hope you continue to fight the good fight and one day you, I and everyone suffering like us are pain free :-)

    You mentioned you tried a nerve block that helped for a couple of days if that was successful isn't there some way they can go in and cauterize those nerves?
    Like yourself my left hip absolutely kills I so wish there was something that would take the pain of it away. But the burning CP is the worst and so I know what you mean about wanting to drive your chair in to the swimming pool some days.

  3. #3

    It almost sounds like the only thing you have going for you is your brain, and that is a pretty good one. I always enjoy (focus on) your posts. I think you are about as positive in attitude as one could be in your predicament. Your question on whether you are now incomplete is a good one. Central Pain itself raises the same question, sometimes referred to as Boivie's Paradox, ie. how is it that we must lose sensation in order to have greater sensation; namely burning pain. Shott theorized that pain can bypass cord and go via nerves that travel with blood vessels, and reach the brain.

    One theory is that the thalamus expects to receive input from the external environment. When sensation is interrupted, the thalamus notices a failure of input and turns up the sensitivity, with the result that anything which does manage to come in gets overblown. Since after cord injury sensation is largely traveling in the pain circuits, the overblown sensation is perceived as pain.

    Another theory is that with cord interruption there is a state of neuroinflammation present which results from brain derived neurotrophic hormone (sort of like a skin injury renders the area hypersensitive). This neuroinflammation alters sensation generally, resulting in way too much pain. The cord cannot heal, so the growth factors (such as BDNF) attempting to reestablish a cord union continue to be produced by the glia (which surround neurons). Since some animals can regrow cord and brain tissue (eg birds) we know it is possible to cause it to happen, but no one yet knows the proteins which signal this to occur so it can be used in humans.

    I think your question is actually quite central to the mystery of Central Pain. It is heartbreaking to think of the difficulties of your life, and I can do no better than Cowboy's Place in wishing you well. As to comfort, I have found a latex foam mattress topper helps me, but NOT a memory foam topper, where I just sink and at that point it seems rocks hard. But then, even a wrinkle in the sheet seems brutal, so ridiculously overblown is the sensitivity of the CP circuitry.

    I guess the problem is that CP subjects imagine they are actually going to get some sleep.

    The old story about the princess who could feel a pea under her mattress makes me wonder if back there in time someone had Central Pain, from which legend the story developed.

    There is a big controversy right now between one group which says there are no jobs for biomedical researchers so we should reduce the number of PhD programs, and a second group which says biomedical researchers are our only hope, so we should provide jobs and money for the task. You obviously know which side I am on.

    P.S. In the above paragraphs, I use the word "circuit" but in reality it is not thought to be a hardwired business, since neurotransmission is mostly chemical. Our thoughts are a chain of chemical reactions, goes the theory. Since no one understands consciousness, we can be quite sloppy in choice of words and still be as precise as our current state of knowledge permits. Our ignorance does not prevent the publication of entire books on a subject no one knows anything much about. I saw a lecture advertised about an expert on consciousness. I figured I was probably about as expert as he was if I could read the advertisement.
    Last edited by dejerine; 04-20-2014 at 11:58 AM.

  4. #4
    Hi Ryan,
    Sorry for your predicament. Think of you often.



  5. #5
    I'm givimg up right. lost my headsset. going nuts
    C-5/6, 7-9-2000
    Scottsdale, AZ


  6. #6
    I swear it's getting worse. Now it even hurts when I'm in my chair and that used to be the most comfortable spot for me.
    C-5/6, 7-9-2000
    Scottsdale, AZ


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