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  • #91
    Sounds sucky, rohrer. I KNOW you are really suffering.

    I was glancing around this pain management site I linked before, and got a surprising amount out of reading some of the articles about managing chronic pain. More than the articles themselves, I was helped reading long commentaries at the ends, from patients suffering from intractable chronic pain - how they cope. It is heart-breaking to read some of their stories: absolutely to the point and with details of suffering that blew my mind.

    The articles/commentaries about opiate use and especially problems associated with it (for non-cancer patients) were informative as well as touching. One wonders how some people stand pain which clearly surpasses my own experience and understanding (and I speak as someone who spent most of the weekend in bed reading - erm, Harry Potter, to get my mind off it). Indeed, some wrote in frankly how hard it is to fight the urge to just throw in the towel on bad days. There are lives of unrelieved pain, stood with quiet courage in the shadows of life as most know it - experiences that others never have to think about.

    The point is repeatedly made, in fact, about how hard ( if not impossible), it is, to get "non-pain-patients" to understand the life experience of such patients. That there are two completely separate worlds - and the PAIN world is unimaginable to the NON-PAIN world.

    Opiate medication, even "hyperalgesia" or hyper-opiate medicatioo. stood out as a life saver for many. Its ability to give sufferers the ability to hang on and maintain some quality of life and relationships, was striking. Also, the very real health dangers of suffering unrelieved chronic pain (among much else): immuno-suppression, heart attacks, High BP, depression. This is especially when prescribed with great expertise and sensitivity (for example. rotating opiates).

    I'm sure there are other sites online where people in severe chronic pain support each other too. The management of chronic pain really is a special black hole in modern medicine. However, we can and should be grateful for the more enlightened attitude to opiate medication today compared to what existed even a few decades ago in this country.

    It's worth remembering too (as I did reading that site) that many people in excruciating pain from problems like ours, do NOT even have the luxury of considering surgery because of their overall condition. We're very lucky in that regard. It means that at every point, in a sense, we're deciding to take pain medication (if we do) instead of opting for surgery. This reduces our pain in a way - at least, I feel that. It's very different to be locked into a tortured body KNOWING there's not even an imagined way out!

    BTW I learned that some people have a genetic idiosyncrasy which makes them require much higher opiate dosages than normal, to get any relief at all. One such patient reported having had minor surgery without being knocked out because of it. It would have killed her to have the level of sedation accompanying the needed level of analgesia. She said her doctor (and she) were very worried about what she would do if and when she should need heart surgery or were in a car crash.

    (I worry about car crashes too - as we all must - more than average, that is. Her concern is different, though).

    http://updates.pain-topics.org/2009/...c-pain-is.html
    Check out the links in the right hand column.
    Last edited by Back-out; 06-27-2010, 08:46 PM.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

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    • #92
      PS

      I never forget the story of a the tortured death of the father of a good friend. He died twenty years ago in absolute agony from advanced prostate cancer. It stands out in my memory for two reasons.

      a) because the reason he suffered so terribly was THE reason of the times: denial of opiates because of "fear of addiction"! Heh, in a terminal cancer patient!?!

      b) because they were one of THE richest families I grew up with. I'm sure their total investments were worth > a billion $!

      But even that great wealth couldn't buy him pain relief by using opiates at that point in American medical history. Things are much, much better now though they need to improve still more.
      Not all diagnosed (still having tests and consults) but so far:
      Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
      main curve L Cobb 60, compensating T curve ~ 30
      Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

      Comment


      • #93
        Amanda,

        That article really hit the nail on the head! This is EXACTLY how pain has affected my life. I have always been a person that enjoys activity, but pain has prevented me from either doing activity or enjoying it - forcing myself. It completely robs you of energy and makes you feel like nothing but a lazy slob. I'm not a lazy slob, I'm in pain. I force myself to clean house after four other people, three of which should be doing it when I'm down. The article is sooo right that people in the non-pain world have NO IDEA what it is like for those of us in the pain world. I feel guilty when I take any meds, but if I don't, I won't function at all.

        Jess,
        I forgot to answer your question about klonopin. It is a benzodiazepine that acts not only as an anxiolytic but also as a muscle relaxant. Valium does the same thing for most people, but it doesn't work for me.
        Be happy!
        We don't know what tomorrow brings,
        but we are alive today!

        Comment


        • #94
          hey rohr...
          yes, i know klonopin is a relaxer...figure it relaxes you and your muscles follow....

          i once wrote here what we used to tell our Lyme doctors back in the day......"give us the pain meds now for the pain...we'll worry about the addiction later!" we were in so much pain in so many parts of our bodies...we just wanted out from under...

          jess

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          • #95
            Well, I'm "hoping" my major pain crisis is over. I slept through the night last night without waking up to take pain meds. I went 10 hours, although I am quite sore this morning. Sore is not the same as what I was feeling. Thanks for all the support. You guys really helped me through.
            Be happy!
            We don't know what tomorrow brings,
            but we are alive today!

            Comment


            • #96
              Great news!

              Pain IS frightening. The world looks entirely different when one is in severe pain and when one is not. All decision-making changes too. From what I read here, this is one of the variables that most confuses people who are going back and forth about surgery - whether one is in that pain-induced state of desperation or not.

              It's so hard to remember pain! As a fact, no - but as a reality, yes. If we can't even fully remember our own suffering, how in the world can "non-pain-people" understand what it does to one's outlook?

              For me, the goal is to keep below that thresh-hold of feeling trapped in an intolerable state. I can't be rational otherwise. Unfortunately, anxiety has a lot to do with it, and I have not found a way to manage that well - so many variables, all too realistic in my life.

              Wishing you a terrific, TOLERABLE day!
              Not all diagnosed (still having tests and consults) but so far:
              Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
              main curve L Cobb 60, compensating T curve ~ 30
              Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

              Comment


              • #97
                hey rohr


                jess

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                • #98
                  Well it's black cap season (3 weeks early), so we'll see how I hold up trudging through the woods to get berries for jelly.
                  Be happy!
                  We don't know what tomorrow brings,
                  but we are alive today!

                  Comment


                  • #99
                    hi rohr
                    one of the things about feeling better, or having less pain, is that it is easy to over do it ....i fear you are attempting too much...and will be posting about how much pain you are in after you gather the berries...or after you make the jelly...

                    just a friendly warning...
                    jess

                    Comment


                    • I know, but oddly enough my family depends on the jelly. Not that they will die without it. It's just that is what we eat on our buscuits all winter and they are ripe NOW. My hubby came home from work and went out with me to gather more. Yes, I'm a little sore, but I didn't do anything too strenuous, as the park where I gather berries is only two blocks from my house, and I drove.
                      Be happy!
                      We don't know what tomorrow brings,
                      but we are alive today!

                      Comment


                      • Originally posted by rohrer01 View Post
                        I just wish I could find someone on the forum who has actually seen him. There's lots of good things said about him, but no actual patients. Maybe they don't feel the need to come on the forums because they are too busy living their lives.
                        Well here’s one, but it’s an old post. http://scoliosis.org/forum/showpost....95&postcount=2

                        If you do a search on Raleigh, you’ll find a number of posts associated with Hey. For some reason, Hey is not recognizable in the search.

                        Comment


                        • Originally posted by CHRIS WBS View Post
                          Well here’s one, but it’s an old post. http://scoliosis.org/forum/showpost....95&postcount=2

                          If you do a search on Raleigh, you’ll find a number of posts associated with Hey. For some reason, Hey is not recognizable in the search.
                          Thank you sooo much!!
                          Be happy!
                          We don't know what tomorrow brings,
                          but we are alive today!

                          Comment


                          • Originally posted by CHRIS WBS View Post
                            For some reason, Hey is not recognizable in the search.
                            For some reason, it doesn't like short words.
                            Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                            ---------------------------------------------------------------------------------------------------------------------------------------------------
                            Surgery 2/10/93 A/P fusion T4-L3
                            Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                            Comment


                            • Rohrer,

                              Did you ever call one of the Schroth clinics in Stevens Point or Milwaukee? See my post on the first page of this thread. If your pain is primarily related to scoliotic posture, they can probably fix it.

                              Comment


                              • Originally posted by Writer View Post
                                Rohrer,

                                Did you ever call one of the Schroth clinics in Stevens Point or Milwaukee? See my post on the first page of this thread. If your pain is primarily related to scoliotic posture, they can probably fix it.
                                No, I haven't. I don't think my pain is related to posture, as I have good balance. I have bone pain in the curves and muscle pain surrounding the curves. There's also no way I could ever afford it. I remember when I was a kid, they sent me to specialized PT at the scoliosis clinic to work on posture. They really did more harm than good. They had me back up against a wall and press the small of my back against the wall and also press my neck up against the wall. This removed ALL of the natural lordosis in my lumbar spine and my neck. I don't know what in the word they were thinking! Naturally it increased my pain and now my lordosis is gone. I'm not against going to Schroth to maybe work on these issues, but there's no way for me to pay for it as I am just poor folk.
                                Be happy!
                                We don't know what tomorrow brings,
                                but we are alive today!

                                Comment

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