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Thread: Describe your pain, am i uniquely screwed?

  1. #1
    Senior Member Tim C.'s Avatar
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    Describe your pain, am i uniquely screwed?

    Other than my fellow kindred spirit sci sufferer, screen name ALAN .
    I sometimes wonder if I am among the few that suffer daily from Debilitating limb, buttocks, gut , And shoulder pain As a quad Is enough to make me want to drive all off the pier. only I don?t have a pier That is wheelchair accessible
    I see all these other spinal injured guys Able to make some semblance of life without having to wrap themselves in blankets And rock back and forth on their wheelchairs unable to even think about getting outside And doing anything productive. especially on nights preceding my printer no patch change become unbearable, I can?t even concentrate on a stupid tv sitcom, Let alone operate A keyboard /tracking pad for my computer. days I feel like I?m just warehoused Until my body says it?s had enough of this world. not something that a puff of cannabis oil even touches. Pain from digestion gas or even entrained air is a killer. Oxy is my fallback breakthrough relief that I hate yet there?s just nothing else out there. Am I alone?

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    I am not in your category, Tim C., but I've read plenty of stories from people like, or worse off, than you. Gas can leave me extremely unhappy. Gut pain- yeah. You are not alone, but the others are curled up in balls right now waiting for a better moment to get on the computer.

  3. #3
    I used to have all those pains you describe and still do to a lesser degree. I think it was related to my gut and medications that affect the gut (valium and oral baclofen). I am much better without them. Irony is that some of these meds that are supposed to help pain actually make it worse in the long run.

    Pain meds are not a long term solution IMO.

  4. #4
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    I have crazy pains and phantom sensations. Too many to list here, but the base is paresthesia over all of my paralyzed body (T3 complete). It buzzes along at a 3-4 on a pain scale of 10, but it can have local excursions to 8/10 for the right foot that's crushed or the hairbrush up my butt sensation or the dysesthesia (about a 2" section of skin around my chest corresponding to approx T3-T6 dermatomes) that can feel like it's burning, freezing, cutting or all of the above at the same time. The phantom sensations of actually having a bowel movement or needing to pee really, really badly right after you've cathed and for hours are just bonuses.

    All of this is normally something I can deal with when it's low key at a 3-4, but when it escalates to a 7+ it's quite debilitating. This usually happens towards the end of the work day or when I'm under a lot of stress or not sleeping enough.

    I did have a recent experience with medical weed that's worth relating.

    I was in Colorado for a job interview and came home with about a months worth of 1:1 CBD:THC vape cartridges. Over that month of using them I'd say my average pain went from 3-4 to 1-2 which is pretty huge. More importantly, my excursions to 7-8 were nonexistent over that month. All this was based on using the vape several times (9-12 hits) from about 5:30 PM until about 9:30 PM on workdays.

    When I ran out is when I really figured this out as things have gone back and excursions are back and it sucks.

    My state has MMJ, but no dispensaries have anything to sell yet so I'm hosed until I can get to a state with recreational.
    T3 complete since Sept 2015.

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    I just wanted to let you know that we can relate. My husband has DEBILITATING neuropathic pain. His butt hurts badly, always. Also has shoulder pain, and is currently battling (for months) prostate/ bladder / abdominal pain. Hes about had it. He used to take Oxycodone (30mg 6X day!). It had him functioning, but he got pretty out of hand with it (built tolerance, took more than prescribed, etc, and eventually got booted from pain management). That was the beginning of the new, worse hell that we now endure. Can't really think about a future until we solve this problem, which i have been diligently working on.

    We've tried all the "normal" stuff- Lyrica, neurontin, etc. As I have mentioned here before, Xanax is one of the only things that REALLY takes the burning (neuro) pain away (as opposed to taking it down to a lesser level that is more tolerable). Needless to say it is dangerous, addictive and horrible. But none the less our life was hell, so we went with it. Ambien seems to be almost as effective, is easier to get prescribed, and less dangerous. You will only get one pill / day (it's for insomnia), but it's nice to have in the arsenal.

    Amitriptyline in high enough doses will put you to sleep. I'm not yet sure how it affects nerve pain, because he only woke up enough to pee, and back to bed he went. So, for insomnia it may be a good thing to take at bedtime if you found the right dose to be able to wake up at a reasonable time the next day.

    Medical cannabis : He just got his card. I have been researching like crazy. There are so many strains and ratios. I feel quite confident that if you had a good strong Indica (Kosher kush) you would sink comfortably into your bed, pain free, barely knowing you had a body, and drift off to sleep. I'm not sure I'd give up on it until you have really tried different strains and ratios. I will be working on finding something that is better for daytime, too, and not leave him in another world completely. Many people I've talked to on my other SCI forum say that it has worked for them, so I am going to pursue it and look hard to find something that works. He does smoke sometimes (street stuff), but of course you have no idea what indica/sativa ratios you are getting, So Medical will be much better for testing/ trial and error.

    Our "wheel chair" guy was just here yesterday. Chris was talking to him about how much his butt hurts, and he said : "Your chair back is angled back some, and that puts more pressure on your butt. You wiggle around a lot but are in your chair a huge percentage of the day, and should be getting off your butt once per hour, not once per day at night. Don't wait till it hurts to get off your butt. Get off of it frequently (if you can tip the whole SEAT of your chair tilted backwards, that works). " Sounds stupid, but I was telling Chris the other day that when I'm on the computer too much, my a$$ is killing me, and I'm sure for someone in a chair, it's compounded about 5000%. If you are, in fact, in your chair a lot, it makes perfect sense that your butt hurts. Wheel chair guy knows things.

    As far as your guts go, I would think that rather than finding a way to mask that pain (which may not be possible)- that figuring out why it's happening would make more sense. Is the oxycodone causing slow bowel motility (surely) and that's what's causing the gas/ abdominal issues? Are you on any medications that list abdominal pain as a side affect? Are you not wiggling around enough and air / gas are trapped in there and not finding there way out? Are you eating a lot of the same food often, and it could be too much of -something- that is causing excess gas or pain ? Chris was recently taking a lot of Kratom (some leaf from overseas that's supposed to provide pain relief) and started having a new type of abdominal pain. Stopped it and it was gone. Could you have some sort of bowel issue such as IBS? I would explore some possibilities and really try and figure out what's causing it. If your guts aren't happy , there must be a reason why.

    Anyway, sorry for the rant. I feel for you so much. My husband is at the end of his rope, and can't function as a normal human being right now, either. I know it sucks to have to try and "figure out" all of this stuff all the time. Seems like we are ALWAYS doing that for one issue or another! But, I am hopeful that putting in the time and work on some of these issues will pay off.. BIG HUGS TO YOU! For whatever they're worth. Take these things on , one at a time.

  6. #6
    I don't have your areas of pain, but almost from day 1 of my injury (7 years ago, T-5 complete), I have had pain in a tight band around me at the break level. It is there ALL the time and often includes somehow even worst pain as I get periodic stabbings for about 10 minutes and infrequent "vice grips" wherein the band tightens even more for about 30 minutes. I have tried everything and, though I haven't contemplated suicide I have, almost weekly, told the Lord that I can't take this anymore and I am ready (I'm 60). So I just got my MJ card and purchased ACDC strain, which is supposed to be the best for pain. Haven't tried it yet, but will as soon as my vape pen gets in. Good luck. You aren't alone.

  7. #7
    Senior Member Tim C.'s Avatar
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    Thank you MR tell me how goes your MJ

    Quote Originally Posted by MikeRobison View Post
    I don't have your areas of pain, but almost from day 1 of my injury (7 years ago, T-5 complete), I have had pain in a tight band around me at the break level. It is there ALL the time and often includes somehow even worst pain as I get periodic stabbings for about 10 minutes and infrequent "vice grips" wherein the band tightens even more for about 30 minutes. I have tried everything and, though I haven't contemplated suicide I have, almost weekly, told the Lord that I can't take this anymore and I am ready (I'm 60). So I just got my MJ card and purchased ACDC strain, which is supposed to be the best for pain. Haven't tried it yet, but will as soon as my vape pen gets in. Good luck. You aren't alone.
    Tight band descibes it well . I got it 24/7

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    Quote Originally Posted by Tim C. View Post
    Tight band descibes it well . I got it 24/7
    I suffer that banding and it grinds me down. Luckily I can move around enough to stretch out the thoracic region and work on my breathing . That helps a lot. Best is standing and stretching to grab a bar barely within reach. I just stand that way for 5 minutes, breathing into the areas that feel constricted and they usually release quite a bit. The only place I've found that is safe to do that is at my gym so not even every day, but I'm trying to design a simple one to install at my house. It ought to be simple but not hen space is limited.

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    I'm now buying pure CBD (crystalline) and mixing that with regular MMJ / shatter / oil to create a nominally 1:1 CBD:THC mixture I can vape and it is working roughly the same as the stuff I got in CO and CA. In my experience Indica is way better for pain than Sativa, but Sativa + CBD works very well for me while sativa alone makes my pain worse.

    It would've been nice if THC, CBD, etc had been studied these last forty years to develop better pain meds...
    T3 complete since Sept 2015.

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