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I'm tired of this #$%&-ing pain!!!!

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    Between pains and balance problem, I'm always fidgeting, and often grimacing. My prayer at bedtime every night is to not wake up the next day (if I get to sleep.)
    Alan

    Proofread carefully to see if you any words out.

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      Oh Alan... Isn't there anything left for you to try? At all....

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        TAM, I will forever think of Bill as the Ketamine Kitty. Not sure whether to thank you or curse you for putting that in my head! (Not sure if Bill will thank or curse you, either...)

        If you really want to, you will know when someone you care about is truly hurting, even if they try to tell you otherwise.

        Severe pain is clearly visible in both appearance and demeanor. My HipHubby can tell where my pain levels are at within just a few minutes of interacting with me -- my facial expression, body language, manner of speech, and the look in my eyes all change, and he has become adept at reading them and getting some idea of where I'm at in my spectrum.

        While I am never without some manifestation of CP, there are others that only happen from time to time. Apparently I have a few specific noises I make when those sporadic neuropathic pains flare, and the HH is now able to distinguish when I'm feeling like the marrow is being sucked from my scapula vs. having long electrified needles jabbed in me just from the sound I emit when these types of intermittent pain first hit.

        As far as unrelenting pain goes, I'm of the belief that pain that would only be ranked as a 6-7 if it were to last for a limited amount of time will be perceived as a 10 when it must be endured for months or years without relief. Because of this, the 1-10 pain scale is irrelevant when it come to chronic pain.

        There are other problems with how the 1-10 scale is used. Some medical professionals (MPs) define a ten as the worst pain you can imagine, others that it's the worst pain you've ever endured. Those are two very different things. Under the worse you can imagine, I could only report a ten if my CP were raging at max *and* I was covered in third degree burns all over my body. I can't honestly report a ten under the worst pain I've ever had model, because nothing will compare to how much pain I was in after the surgery when they removed 70 percent of a cancerous tumor and 50 percent of my spinal cord between C2 and C7 -- I felt as though my upper body was covered in third degree burns, and every movement of air hurt so bad that it made me scream out. Since the person asking the question doesn't know my experience or what I can imagine, nor could they conceive of what either of those ten-level types of pain feel like, any answer I give that's honest will mitigate the intensity of the pain I'm having.

        The 1-10 scale might work for normal people in acute pain, but it's useless for people with chronic, central pain.
        It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

        ~Julius Caesar

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          I think being thought of as the ketamine kitty is actually cute, and I'm not generally a "cute" person. Wonder if I can change my name on the board, I really kind of like it.

          Kindly,

          bill
          Kindly,

          The Ketamine Kitty

          All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

          Next time I die make sure I'm gone,
          don't leave 'em nothing to work on JT

          And I ain't nothin but a dream JM

          Comment


            Hehehe kitty indeed. Yeah, I may be in the doghouse with Bill I'm going to have to find a nice freaked out kitty image, for him to use as an avatar *ducks*

            Thank you again, for giving me some more insight.

            I really see what you mean - how can someone compare something the the worst pain they've ever felt, when they've never really felt anything bad?

            And even if they have, everyone hasn't experienced the same things. So how can it really compare. I mean - ok, I had a few things that hurt. As one of them was a broken bone (kneecap), Bill kindly gave me something to compare, with his experience. But I was lucky (?) enough to have a broken bone to compare with. What if I hadn't? And honestly, other than when I initially fell or was hit with doggy tails (happy dogs were a very bad thing, I tried hard to ask them to be sad, temporarily) - it really wasn't that bad. I didn't figure out it was broken. I managed.

            And I do remember, the things that did bother me a bit (right after a minor surgery, and a dental procedure) I could ignore it pretty well for a while. But eventually, my "ignore" wore out, and I wasn't too happy. And again, I'm sure that was sooo minor compare to what you all go through.

            So I totally understand the ineffectiveness of the pain scale, for chronic pain.

            Wondering... what should they ask instead? They have to ask something... Is the answer like my nurse friend simply asks "Do you need me to do something about it?"

            Or in the case of neuropathic/central pain "Do you need me to TRY to do someting about it?"

            Any better suggestions?

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              Originally posted by bollefen View Post
              I think being thought of as the ketamine kitty is actually cute, and I'm not generally a "cute" person. Wonder if I can change my name on the board, I really kind of like it.

              Kindly,

              bill
              lol our posts crossed

              I think we just need to find you the right avatar, at least temporarily.

              Comment


                Fuck dependence, too. I broke my left wrist in half at 14. Nice Z shape. The ortho at the ER then pulled it straight. That was very bad. My shoulder blades and verterbrae sticking through the scraped-off skin feeling compares.
                Alan

                Proofread carefully to see if you any words out.

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                  My nomination for the official Ketamine Kitty avatar:
                  It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                  ~Julius Caesar

                  Comment


                    Originally posted by alan View Post
                    Fuck dependence, too.
                    This!

                    Originally posted by alan View Post
                    I broke my left wrist in half at 14. Nice Z shape. The ortho at the ER then pulled it straight. That was very bad. My shoulder blades and verterbrae sticking through the scraped-off skin feeling compares.
                    That sounds awful, Alan, just awful. I'm so sorry you experience that. I have a different type of scapula pain. There's nothing covering my left scapula except a few thin layers of skin graft -- no fat, no muscle (the trapezius muscle was removed and used to cover a spinal incision that wouldn't close) -- just very thin skin. Anything touching that shoulder blade causes severe pain and a sickly feel that it's just not possible to describe. Not sure how it compares to your scraped off skin feeling, but I wanted to let you know I empathize with you.

                    ER docs can suck. I broke my tibia and fibula just above the ankle on my right leg, which is hyperalgesic as a result of my SC damage (i.e. noxious stimuli produce a greatly exaggerated and prolonged pain response). The ER doc on duty at the only hospital on island decided I was drug seeking and had deliberately broken my leg to get narcotics, and sent me to get x-rays without any pain meds. Even though my screams when the ankle was manipulated by the x-ray tech could be heard two departments away, she continued to deny me any pain meds. She's why I can never go to the ER for unmanaged pain.
                    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                    ~Julius Caesar

                    Comment


                      THC - that is terrible about the ER doc withholding pain meds. Have you thought about complaining to the hospital administration? If he did that to you, I bet there may be a pattern to his/her behavior and letting the administration know can be helpful to help 'educate' this doc.

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                        Originally posted by Skye83 View Post
                        My life still reflects the "elephant in the room" dynamic. I have such vivid and unpleasant memories of my childhood. My dad would come home drunk on a Saturday night, beat my mother and I would hide, covering my ears, trying so hard not to hear her screams and the furniture flying. Sunday morning was Dad's specialty German pancakes breakfast. I remember so well how bizarre it felt to sit at the table eating those great pancakes, everybody acting as though nothing had happened the night before. It took a few years of therapy for me to be able to express my emotions and be myself, so to speak. (Self-actualization.)

                        Now I'm 56 years old and feeling like that little girl who would sit and smile through any kind of horror. Only now I'm not so shut down that I realize exactly what is happening. (Sometimes I wish I wasn't so aware-it really hurts not to have validation or at least some interest in my pain.) My family of origin either totally ignores me or uses any opportunity on the subject of pain to talk about their own issues. I politely listen, but honestly seethe inside-their pains are either transient or relieved with medication. I realize they can't possibly understand what it's like to be in my body. But the fact no one even TRIES to understand or ask what the central pain feels like...that's when I feel I'm still at that breakfast table, sitting and smiling through the bizarre horror. Only now that horror is my own body and the "outsiders" who will never get it or even try to understand are just people, not family, just people. At least, I can post here and I know there are persons sitting and nodding in understanding, just as I have read so many posts that move me. The "elephant in the room" is my wracking pain and I don't have any illusions that my family will ever be emotionally supportive. I've had to find other ways to help myself survive. Posting here helps a lot.

                        But yeah, I'm tired of this #$%&-ing pain, too.
                        relate to your entire post...a relative came out on the porch when i was icing down my knee because i had taken my daily allotment of pain pills and my leg joints were still killing me, and he started kicking out his leg like one of those rockett dancers and saying how his knee was messing with him too. . Though I can walk I can't stand on one foot for more than a second. He often makes coments about my "pain" like im making a big deal about it. Not a lot I can do...can't prove I'm in pain...makes me start to doubt myself and think I'm some kind of superman hypochondriac with super powers for feeling super pains. Or hummmmm.........maybe I really are that pain pill addict he inferred I was.

                        but anyway...people can only see the world through their own eyes

                        pain is a vulgar verb
                        tom


                        Welcome to The Flat Earth Society

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                          My scapulas and vertebrae feel like they have no skin - feel like the bones just stick way out of my back (sounds like yours feels, hipcrip), along with all the other pain sensations and my popping scapulas. My abdomen is just as sharp. Legs, feet, and hands are also very sharp. And they all keep getting worse, as they have since they first appeared. Regular MRIs supposedly show no change in my neck, yet pains increase and arm function decreases. I'm beyond tired of all this (and tired of sitting so unbalanced and crooked.) Consciousness is torture, moving is worse.
                          Alan

                          Proofread carefully to see if you any words out.

                          Comment


                            HipCrip

                            I am with arndog for sure on this one. For sure.

                            To give him the benefit of the doubt, maybe he wanted you without meds so he could test you better, but it sounds like he did not apologize after the xray showed the fracture. It is a very insulting thing to call someone a drug seeker. Or maybe he feels under pressure from the regulatory boards. Doctors minds are warped from stories of docs who lose their licenses.

                            I would write a letter to the state medical board (US territory?) and ask them to require this doctor to complete training to update his knowledge about hyperpathic pain. Where was he trained? Or should I say where did he fail to get training.

                            Not being vindictive, just trying to help this poorly responsive ER doc out of some bad habits. Maybe he sees people all the time trying to seek drugs and you are a victim of HEURISTIC medicine.

                            A note should be placed in your chart concerning central pain. I would ask for a review of your personal medical situation by the ER committee, and at least require him to review your surgical history, and then also require that he read something about central pain. David's site has some good stuff. Sergio Canavero has a book on the market. (And you could always ask him to voluntarily have a shot of capsaicin---where is up to you; wherever you think would enhance his understanding the most).

                            ER docs work long shifts. He may have had some patient he thought was really sick and hurried you along without stopping to think. The realization needs to occur that someone with CP is really sick.

                            Obviously I don't actually believe all this slack i am cutting him, I am just trying to set a context for how you might write a letter of complaint.

                            You have a choice between coming on strong, vs. just wearing him down. You might try a feeler letter which is moderate, and decide if you have to raise Cain or whether successive submission of central pain info to him AND to the hospital board might have the most effect.

                            Finally you might have him look at this thread, this forum.
                            Last edited by dejerine; 16 Dec 2009, 11:04 PM.

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                              I sit here in tears as I read all your post, I'm a newbie to the world of pain! The more sensation and muscle I regain the more pain. My Doctor warned me this would happen. So why did I bother? Now I'm not only in pain, but now I can no longer conceal my depression! I thank all of you for sharing.

                              Comment


                                Jon and Dej -- I adore you both for your concern and suggestions. I did pursue this with the hospital (it happened almost two years ago) through the Patient Advocate's office (she's a treasure) so the issue would be brought up during their next review by the Joint Commission as well as with hospital administration. Getting anything to happenn down here is a nightmare, but I keep plugging away.

                                Believe me, I am no stranger to the higher ups re: hospital policies vs. effective pain management. For those interested, here is the tale of my first encounter: The Great Drug War of 2007. When I've gone into the ER for non-pain issues since then, the ER nurses all know (and like) me and just tell me to let them know when I take my pain meds so they can chart it. The docs are still a problem.

                                BTW, the ER doctor in question was a woman, not US educated. The nurses on staff, as well as the radiologist (who told her that x-rays could not be taken until she could position my ankle without me screaming and my hypersensitive leg spasming off the x-ray plate), all joined me in reporting this doctor. When the doc finally consented to give me 25 mg of Toradol and I reported feeling some relief 15 minutes later, the doc said, to my face and in front of a dozen people, that this confirmed I was drug seeking because "Toradol doesn't work that fast." Fortunately, the island's only ortho doc arrived bout then and gave me 50 mg of Demerol and 25 mg of phenergan, which got me through the x-rays that confirmed both tib and fib were broken.
                                It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                                ~Julius Caesar

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