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Thread: Ok it's time to seek help

  1. #1

    Ok it's time to seek help

    I have talked about my pain here and in many blogs. But when people hear that I hurt, they don't understand the severity. In the first moments when I wake up I would rather not be living then feel what I have to feel but it goes from a 10-11 to an 8 or so within an hour usually. I'm not being a girl. Most grown men would fall to the ground screaming if they felt what I smile through. It's more core that hurts the most. Burning from the outside all the way in. My whole body is tight and if I move my head, shoulder or anything it only aggravates it. Crying and breathing does too so when I wake up I don't move a muscle. Many days are unbearable to. It's the reason I can't work, make plans in advance, why I can't fall asleep...

    i otherwise have have a pretty good life but I know what the possabilities would be without the pain. I'd be able to dress myself, have more energy to drive, so many other things would be better.

    I was on 900mg of gabapentin 3x a day and 15mg of baclofen 3 times a day. I was still in severe pain so wondered what I'd feel with less meds. I now take gabapentin 3 times a day but 600/300/600. And 10mg of baclofen 3 times a day. Maybe it's worse?? But I look back and I've always had days where it was unbearable and days where I felt like I could function. I wanted to take the meds down because I got hurt at 24. So young to start these things and then to take them for the rest of my life?

    at one point I tried cymbalta but I don't remember feeling a big difference. Also tried tramadol but again..don't remember feeling better. I tried pot once but it made it worse. And lyrica for one night which made me feel like I needed to jump out of my skin and kill myself. Granted that was an epic 7 day stretch 3 years ago that will go down as my most painful week of all time. No idea why.

    I know now I have options but I'm scared to see a pain doc, scared that I try everything only to fail. I've read a lot about pain pumps too.

    now my worst experience is waking up. No exaggeration..even after nodding off for a few seconds. Something happens in our sleeping bodies that pisses mine off. I just had a minor procedure recently for something else and was so scared to be put to sleep. I was given pain meds and minor anesthesia. I woke up and there was minimal pain. So whatever they gave me through ifIV sure helped! I do not just want to keep upping gabapentin. What works for you for serious central pain?

    ignore any typos. I hurt and I'm tired

  2. #2
    Senior Member willingtocope's Avatar
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    I'm sorry your pain is so severe. I hope you can find a doctor who can help.

    Mine is not nearly in the same league, but may somehow be related. I have MS, not exactly an SCI. The drugs I've tried (Gabapentin, Baclofen, and now Zanaflex) were all prescribed for spasticity and tone. I'm currently taking 4mg Zanaflex / 5 times daily.

    I usually get in bed around 7pm to watch TV. I get up several times during the night, but each time I notice my muscles get tighter and tighter. By 6am, when I finally need to get up for work, I have to spend several minutes convincing myself to move. Both legs, my left forearm and hand, and my stomach feel like one big cramp...it hurts to turn. The strange thing is, once I wiggle to the side of the bed and put my feet on the floor, the cramps go away. One I'm vertical and in my chair, the only time I feel pain is if I happen to stretch.

    I don't know if Zanaflex helps, but I'm afraid to stop it (I do need to work).

    I'll be interested in what your doctor recommends.

  3. #3
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    I am no doctor, but from what you say here, have not read elsewhere, sounds like a lot of hurting is mental. Not take than ignorantly, because not intended. Have you talked with a doctor about your head and thinking? Separate that from the physical. 1 thing I somehow discovered is I was simply trying to once again do too may things.

  4. #4
    Rachelle, I too have had a huge amount of Neuro pain for many years and I don't really believe in pain meds. But what has really helped me is 1) Exercise 2) eating right and lot's of Probiotics 3) getting enough sleep. I think (and this is just a theory) that maybe you have been on a lot of antibiotics in the past and maybe caused a imbalance in your core and therefore IBS which can really up neuro pain. So try these things I outlined above and drink lots of fluids and cut way back on the meds. Do you have a FES bike? This will cut down on your spasticity naturally and give you a good workout too. Try these things if you can and report back.
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

  5. #5
    I just wanted to add I know all this sounds simple when there are so many meds we could take, but I just believe in overall wellness and don't believe that meds promote that. I think Probiotics alone could greatly help you. Get something like "Garden of Life RW Ulitimate" which contain 100 billion active cells and start on those and I'll bet you feel a lot better just from that and eat some healthy food. I know when I'm eating right and taking probiotics I just feel an overall warmth in my body of well being and not that harsh Neuro pain that I know can be so horrible.
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

  6. #6
    Quote Originally Posted by Curt Leatherbee View Post
    I just wanted to add I know all this sounds simple when there are so many meds we could take, but I just believe in overall wellness and don't believe that meds promote that. I think Probiotics alone could greatly help you. Get something like "Garden of Life RW Ulitimate" which contain 100 billion active cells and start on those and I'll bet you feel a lot better just from that and eat some healthy food. I know when I'm eating right and taking probiotics I just feel an overall warmth in my body of well being and not that harsh Neuro pain that I know can be so horrible.
    i think my pain is past that but can't hurt to try. It's not an ibs thing. It's not just located there. Since the beginning of my injury it's been my core. Mostly on my left side. Gradually just getting worse. I don't drink enough water though. Maybe that's contributing.

  7. #7
    you really should see a pain doc. review what you've tried. discuss treatment options and their thoughts. decide if he/she is right for you. If not move on. know how difficult and complex this problem can be, manage your expectations

    kindly ket,

  8. #8
    It may be a ibs thing and you don't know it. Mine was on my left side too, that is where the main part of the bowel is located, in the hospital I remember when I was laid up for 6 weeks post injury they'd turn people to the left side for bowel care. I say, lots of water, probiotics, exercise and sleep. Try it.
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

  9. #9
    Senior Member
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    I hate meds for anything. My thinking is, they are not the real thing. They are hiding something. Try this. Instead of trying to fix entire pain, see if you can somehow break down into very tiny steps. And not for 1-2 days. It needs to stay consistent. If not working, you may be trying to solve something still too big. Break it down even more. This process takes time. Do not set some kind of time you think it will be solved. If you do solve, great. Look at next piece of the pie and add that to it. Doing something like this and making success out of it, not only helps you physically, but you will be surprised at what it does for you mentally. I get in same boat you are describing. Right now, I am in the "rather be dead" boat. I fell today on transfer to toilet. Was stuck between wall and toilet. Was so pissed I tried put my fist through the wall. When finally cooled down, somehow figured how to crawl out of there. I was baffled. Still not know how I did that.

  10. #10
    Super Moderator Sue Pendleton's Avatar
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    Lower left abdominal pain is often IBS but you would want to rule out other causes too. For me it was IBS but I had your kind of pain for awhile early on and get it and glad mine pretty much disappeared. I'd see you both your PCP but definitely see a pain specialist. As Ket said, it is trial and error and they know how to ramp you up and down properly for some of the meds. It will not be fun but if you do find something that works your life will be much better. Most narcotics put me to sleep. I mean I fell asleep in PT! Elavil for that one night is what I assume a seriously bad acid trip is like. I finally was put on methadone in rehab. I could stay awake and function. I knew the pain was still there I just didn't care about that one thing anymore. Then after awhile I was stepped down to less intense meds. It is trial and error. Good luck.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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