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  • Living in HELL

    I know I've posted and bitched on here many times and here I am again about to bitch some more because I'm tiered of living in HELL. . There isn't anything that's going to fix this pain except for death and with the amount of pain shooting through my hips and abdomen I would gladly accept death! If I wasn't a C4/5 quad I would have already put an end to this misery or so I tell myself unfortunately or fortunately depending who you are and how you look at it my options are very limited and so I'm still here wishing it would all just end.

    I am beyond depressed, anxiety is through the roof and I'm not able to talk to anyone around here about it 'cause they just don't understand that and it's like listening to the same soundtrack over and over! I've done my 30 years thankfully only the last four or so have been filled with pain by the way does anyone else suffer from burning throbbing abdominal pain?
    I believe Alan said that he does anyone else and what do you take if anything that might help?

    I so look forward to the day I am pain free no matter how that's achieved, thanks for listening
    Chris
    Courage is being scared to death but saddling up anyway. .(John Wayne)

  • #2
    My sincere sympathies. Most of my neuro pain is in my abdomen too. I think part of it is the effects of paralysis on digestion. Do you take anything to reduce gas? Or probiotics?

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    • #3
      I can only go by what I have seen my wife go through and your current post. My wife had internal pain that sounds like yours. My first question is do you have a pump? Is the dosage correct? If we drop her dosage she has pain like she is being crushed from the inside. Her Baclofen pump saved her life. With it the pain is basically gone, but some is still there which is why she is also on Methadone. Before she was on so much muscle relaxers she would pass out during a conversation. Three different ones for a total of 140 mg a day plus the Methadone. The pump uses the same medicine, but micrograms because it's administered right into the spine. No side effects like taking it orally. What meds do they have you on? I wish there was something we could say or do. I remember my wife being exactly where you are. I was scared to leave the house for a year because I didn't know if she would be there when I came home.

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      • #4

        I have it from the nipples down, just had my 10th major spinal surgery in Nov. Acid bubbling under my skin, lightning bolts down my spine and legs Lancinating pain through my back, like being shot (literally, I'm a combat vet and have been shot.

        I am a dread walker but collapse puke and piss myself go nearly unconscious and scream sometimes til my throat bleeds. No one up or sympathy needed just that I really do get it and am not placating you. I get it Chris and some day I'll just say enough. c4/5 or not there are ways, I ride the line, 3 near misses, you ride it, Alan does, a few more of us are there, live in the shits. I understand, get it out, bitch moan. And know there is no end, ...til we die. Not pretty, but acceptance of the reality may be helpful in and of itself. Crap, face it, could hell be worse? the gate in dante's inferno. Abandon hope all ye who enter here. We did not enter but were cast. Fuck our lives.

        And you are right very few really get it, they really can't.

        sorry I could not be encouraging or whatever, peace brother. Love you bud.

        ket


        All that I am is all gone

        I ain't nothin but a dream

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        • #5
          Bollefen

          There is much you said in your post and much you have not said. Fortunately or not fortunately, there are those here who understand too well without your saying it. I do enjoy reading you because it helps me sort out my own thoughts, which are sometimes too deep to come up with words for it.. Our plight is always really terrible, and our response is impacted by other factors, such as how those around us are able to support us, or, alternatively do not support us.

          ‹It is not gratifying to post here that something or other does not work in severe Central pain. No one wants to hear that. i do it because I hope to prevent others from gong on the wild goose chase for a cure, particularly if they think surgery is going to help their central pain. A person can absorb only so much. I remmber Bette Lou Hamilton, a patient at a famous University Pain Center, who had undergone ten surgeries. She wound up with Kevorkian. When her dead body was left at a Pontiac Michigan Hospital, the ER doctor who received the body told the press he did not believe she had any pain. We are not very convincing, even in death His response is not atypical. I would only say that surgery takes something out of a person and hope you don't have to have any more. I have always felt survival was contingent on conserving scarce resources, mental and physical, and whatever depletes those resources endangers a person. Trying to find low stress things in life is the only way I know to get past the mental impact of CP. Do not ever try to live up to anyone else's expectations. They have no idea what they are talking about. I cannot wear proper clothing on my legs and feet--too much burning. The other night I was in the hospital and a nurse or someone like a nurse came into the room and said condescendingly, "Don't you know it is cold outside?" I said "i have neuropathic pain to the touch of clothing". Her response was irrational, She said "So you're loving this (cold weather then)" Why would anyone's mind go there. Since when is neuropathy good. I said "No, neuropathic pain is ALL bad." I considered telling her a cold breeze was a potent evoker of burning but I realized despite her medical background, I would just get more nonsense.

          Simplify your life Bollefen. That way you may be able to hang onto it. I certainly hope so. I really enjoy your photographic talent. very artistic. Hopefully your situation will permit more of that.

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          • #6


            So lucky here not to have chronic neuro pain ... only two or three times a year during weather changes. I wish I could make it better. I'm hoping we'll see therapies in the next few years that may have an off-shoot of reducing pain. I hope so. I look at things the same way - I've put my time in! This life can be so unfair. We'd miss your posts though!
            Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

            T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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            • #7
              Would an fMRI show the pain centers of our brains blowing up? If so, we could carry one with us like a business card. "See this? That's the pain center of my brain! It's not supposed to show up like that!"

              Alan

              Proofread carefully to see if you any words out.

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              • #8
                is this belly pain diagnosed as central pain, but you know it isn't?

                does it feel like a bad stitch in the side? It never goes away. do you have extreme acid reflux? if so you may have a bacteria that is terribly easy to detect.

                I had belly pain from 2000 until recently. it was diagnosed as central pain, but after looking at the pain forum, I knew it wasn't. I got a pressure sore, that required three large courses of Keflex. I still have the pressure sore, but the belly pain is gone after so many years. I learned I have no intrinsic factor. years of this problem has destroyed it. if you have no intrinsic factor, you cant absorb B12.

                That causes you to have no hunger at all, and extreme nausea, as well as something that is very much like AD. its orthostatic though, meaning just moving can cause the AD and tachycardia feeling.

                . If you are taking acid blockers, and simvastatin's you are also inhibiting the absorption of b12. Please hang in there, this might be a problem that is just being missed. if this has gone on a long time, you would have old blood tests that show not much, except elevated white, and low red counts. If you have this problem it's possible you have a low b12 level. Low b12 causes extreme depression, tiredness, loss of appetite, digestive problems, eye changes, hearing loss, sleeplessness, hair loss, tachycardia, nerve pain, loss of fine motor function, passing out or near passing out from heat, and extreme intolerance to cold. ...... I think a lot of people here might have this problem. please don't give up. you could be well again. if any of this is familiar, get your B12 level checked, if that is low, your intrinsic factor. this will not be covered by insurance unless the b12 test positive. if they are positive, you will get a stomach biopsy to see if the lining of your stomach is damaged. it has taken many years of not giving up to figure out what this is. please know you are not alone, and there is hope.

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                • #9
                  Hey Cowboys Place I've had excruciating neuropathic pain since my accident which will be 2 years in January. From the chest down it feels like bubbling acid much like Ballofen described his. Some days are better than others but it's still bad every day. I've been on Neurontin which doesn't work and now I'm on the max dose of Lyrica. My doctor says this is their only two drugs for neuro pain so i guess I'll have to see a pain doc. 2 years has been very difficult...I don't know how I'll make it to 30 or more. I understand what you mean about not being able to complain to family and friends. I've never been one to want to bother others with my problems either. Probably why I haven't posted on here yet! I'm sorry I don't have any advice for you. I just want you to know I understand how much this sucks and I'm truly sorry you're in pain!

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                  • #10
                    The here and now is nothing but suffering. I dread the future in more ways than I care to think about. The past is the only place I find any kind of solace in. Thinkin' about the good times of my pre-injury past. I loved life back then.
                    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

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                    • #11
                      I totally get the feet!!! In rehab I had techs and nurses covering my feet when I was finally asleep and I would be awake and pushing that damn button like crazy within a minute. They didn't get it at all with my feet. One of the psych types did and we did a lot of hard work on biofeedback and me trying to wear socks a few minutes at a time with as much distraction going as possible. I was lucky because between those exercises and methadone I could cope until the worst of the pain just disappeared. But even after 21 years my feet are my nerve pain centers. I take valium for spasms and when I went cold turkey when my old PCP got picky on rules and I needed to be 800 miles away the next day when my Mom died;well, after 9 days my feet were doing the burning cold again. But I am the lucky one. Ten lousy milligrams most nights and the feet are bearable and I no longer kick the spouse across the bed. OK, a nice slathering of moisturizer all over my feet and double on my soles helps too.
                      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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