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    what do you do when the pain is too much

    i can't take much more. tried the meds, sympathetic nerve block. i don't think i can work, even from home. do you guys take vicodin? just to get thru the day? i am struggling. 21 yrs of 24/7 pain with huge escalation past 2 yrs is doing me in. been to pain management clinic, had the latest drugs. no relief.

    #2
    Originally posted by cass
    i can't take much more. tried the meds, sympathetic nerve block. i don't think i can work, even from home. do you guys take vicodin? just to get thru the day? i am struggling. 21 yrs of 24/7 pain with huge escalation past 2 yrs is doing me in. been to pain management clinic, had the latest drugs. no relief.
    Oh, Cass. I am so sorry. I assume that you have tried all the options. Have you had epidural spinal cord stimulation? I wish that there was something that I could suggest.

    wise.

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      #3
      {{{Bette!!!}}}

      no advice, just a hug and a zillion prayers!

      Take care, because I care...

      Teena

      Comment


        #4
        Originally posted by Wise Young
        Oh, Cass. I am so sorry. I assume that you have tried all the options. Have you had epidural spinal cord stimulation? I wish that there was something that I could suggest.

        wise.
        sir can you give us some more info regarding epidural cord stimulation?
        thank you

        Comment


          #5
          Hey Adrian,
          I googled it and the first page of hits was so-so, got this from the second page. Mind you I only spent a minute at it. Try googling it yourself and go through some of the hits...

          http://www.anesthesia-analgesia.org/...tract/77/1/110

          https://www.facebook.com/john.baxter.1213986

          Comment


            #6
            medtronics also has a ton of info on it.i looked this up right after my spinal cord surgery as an option for my central.this was the first thing mentioned by my NS.once i read that it should be considerd a 'last' resort' after trying many other modalities(medtronics lists the criteria you should meet before trying this),i decided against it for alot of reasons,mostly becasue i hadn't attepted any real pain management yet.NSs are like that tho.but you Cass,are the type of person this was made for.it would appear after all this time that you have most likely ran the gamet of modalities?all though,is vicodin the only narcotic you have tried ?i am only asking because of the way you stated it in your post.i just got the impression as tho you were trying to see if taking a narcotic for our type of pain was okay,you know what i mean?whatever actually works,go for it.different meds work for each individual in different ways.many people have a couple different 'types" of pain.some neuropathic and some more structural mechanical type,this is what mine is so narcotics(oxycontin) do work on at least some of mine and it does lessen the intensity to a certain degree with some of the others.i would give just about anything a try at this point.

            you mentioned a sympathetic block,does this mean you actually have sympathetically generated pain like with RSD?unfortunetly those types of blocks will only realistically work with SNS generated pain.they worked for my knee and lower leg which is in part,affected by RSD but didn't do squat for my upper torso which has been determined to be strictly central pain in the area where we were trying to achieve at least some relief.

            have you tried more than one pain doc in all the years you have been trying to find some relief?just where is your pain and what type is it?or i guess a better question would be what does your particular hell feel like?i would at least look into the SCS.they will do a trial run with this to see if it even would help at all before they would do any actual implantation.you could try a TENS(if you haven't already)to see just how that would work.whether you actually respond in any way to electrical stim before even doing a trial run with the SCS.just some thoughts.i wish you lots of luck and hope you can finally find some level of relief.thats a hell of a long time to have to suffer.Marcia

            Comment


              #7
              Hi Cass,
              I have severe pain, too. I don't know what sort you are referring to when you refer to your pain but the advice I use for my 2-tier pain prong: neuro and bone. Neuro is hard to deal with, with me it's the main catalyst for the bone pain but they hardly are mutually exclusive. I've been taking Elavil 50 mgs 1x/day, Actiq 800mcg 3-4x/day, Duragesic 100 mcg patch. I'd like to get off these poisons but I tried last weekend and ending up sweating, thrashing around like a lunatic (segue, as always)...
              This next bit is how I cope when it's unbearable: put in a movie or tv show you really love (I love Sex and the City), put an Actiq 800 lozenge in my mouth and try to ease y mind. Sometimes, I put a lidoderm patch on my bum, but it's not very useful.
              M.

              Comment


                #8
                Hi Cass,

                Sorry to hear about your problem. I also have severe CP and have run out of options to keep it under control.

                I had spinal cord stimulation about three years ago and although it helped the pain a bit but I found that it caused a pins an needle effect in my feet making it more difficult to walk, so I removed it. Now my pain is bad enough so I might not think the side effects are so bad.

                I was also up to Craig Hospital a couple of years ago. Dr Falci does untethering surgery there and has found that pain is relieved in about 50% of the cases. At the time I was not ready to submit to that kind of surgery, so I decided to look for other options. Going to Craig or reading from their website might be helpful.

                I assume that you have had MRI's to check for problems such as a syrinx that might be responsible for your pain. Hopefully that is not the cause.

                In any case I wish you the best in trying to find a solution that will work for you.
                mike

                Comment


                  #9
                  ty all. tens is no use, anti-depressant/seizure drugs no use (in fact, make me sick), haven't actually tried narcotics yet cause i figure i won't be able to function on those.

                  wise, i will ask dr. chaball at the pain management clinic about the epidural. he is an anesthesiologist who worked 20 yrs (?) at UW. thanks.

                  right now i am really struggling with trying to keep working. it is hard to admit i may not be able to and i am letting co-workers down by trying to work yet finding so many days i just can't.

                  Comment


                    #10
                    21 years of this hell and you have not tried any real narcotic types of relief?who has been managing your pain?i would reccomend trying some of the longer acting meds like oxycontin,really.this drug gave me at least some of my life back.being opiate niave tho,you should be started on a much lower dose ,then titrated up a bit til you find at least some level of relief.narcotics DO help with some of the types of pain we feel.unfortunetly not all but in the majority of cases,it can lessen the overall intensity.these should at least be tried befroe going to the SCS.it IS a pretty big surgical type step when you have not even gone the narcotic route yet.the longer acting slow release (like oxy)really don't give you that wiped out feeling and you would still be able to function thru your day.in your case,it may take a bit more time to get used to but most people do accomodate well on them.being on a long acting med may allow you to continue to work and function even better than you currently are.like i said,it just may take a bit to get used to if you are not used to being on any narcotics,but most people do accomodate well and do become much more functional with them vs without them.my pain clinic,the other modalities and the narcotics have allowed me some of my life back.

                    i have tried alot of the anti S meds as well and after trying lyrica,things have gotten really ugly with every other one i have tried since.they make me sick now too.my eyes,my gait(the lovely kidney swelling) and just that wonderful overall stupid feeling they give you,well,i decided i am just going to try and rely more on the outside methods more now.my tens and the lido and this wonderful cream called doxpipin?all help me much much more without the ugly side effects that i keep getting from the anti S meds.the thing is cass,you do have some options to try that you have never tried yet.i would give them a serious shot and see how things go for you.you shouldn't have to live with the full impact of your pain,espescially for as long as you have without even trying any form of narcotic relief.all we can do is try and see what happens ya know?i wish you lots of luck with this.please keep us posted as to how you are doing.marcia

                    were narcotics ever brought up to you by whoever manages your pain or was not trying them simply your idea?just what does your pain feel liike and where is it located?

                    Comment


                      #11
                      Marcia, what is doxpipin and how does it help you?
                      mike

                      Comment


                        #12
                        Cass,

                        I was about to post something strictly empathetic, but not helpful, when I read your latest post.

                        I agree with Firesmurf. I think you should consider some level of narcotics before you try some of the other routes. I assumed that you already had, and that either they hadn't helped or that you reacted badly to them. I think the pain has a much greater effect on your ability to function than the meds will. I use a fentenyl patch and don't feel that I have serious issues functioning with it. I take percocet for breakthrough pain, and on a bad day, when I am taking more percocet than usual, I will feel that it is affecting my concentration, BUT even then, I am able to function far better that I can WITHOUT the meds, and dealing with the pain.

                        If they don't help, or you don't how they affect you, you can back off.
                        T7-8 since Feb 2005

                        Comment


                          #13
                          Cass, I admire that you've been able to work for so long with this. I never could, between the abdominal pains and upper back pains and scapula problems (to hell with the hands and legs pains - they didn't and don't interefere with doing things.)

                          Remember that Vicodin contains acetaminophen (Tylenol) or aspirin, as do other mixes of opiates and NSAIDs like Percocet/Percodan. Better to take pure opiates, be they long acting (MSContin, Kadian, Opana, OxyContin, Methadone, Palladone when approved again) or short actiing (dilaudid, oxycodone, morphine, etc.) And remember that one usually must take laxatives with opiates, as they will constipate. You may be able to get away without laxatives if you take low doses of short acting narcotics (I occasionally take a low dose of dilaudid, as it sometimes helps relieve my stomach when it's queasy, and I don't need a laxative with that), but let your body tell you.

                          Low dose narcotics won't do anything for neuropathic pain, but can help pain from activities such as wheeling or exercise.

                          I tried the fenanyl patch twice. Both times, despite anti-nausea meds, it made me sick as a dog, and didn't touch any pain. Maybe they'll put some other pain meds on patches, and I'll try them.

                          I had a spinal cord stimulator from '86 to '87 (my pain was 20 years less intense then.) We tried all sorts of settings, and revised the stimulator position three times, with no luck. The doctor (Richard North at Hopkins) wanted to place it above my injury site (C-5, though there's basically no cord from the base of C-4 to C-6), but he couldn't get it past the scar tissue or tethering or whatever, so it was removed. He eventually figured the only chance I had of getting relief from the stimulator was if it was placed above functioning spinal cord, and he couldn't get it there.
                          Alan

                          Proofread carefully to see if you any words out.

                          Comment


                            #14
                            to answer a few questions. until around 3 years ago i was dealing with 24/7 pretty bad neuropathic pain only. 3 years ago i developed severe abdominal pain which sent me to ER twice and after many tests and GI visits, all they came up with was IBS. so now i am dealing with both types of pain, plus the neuropathic pain has been getting worse over the years.

                            i really don't know everything they did try in the first 2-3 years (1986-1989) but nothing worked so i just got on with my life and dealt with it. i stayed on doxepin for a while but took myself off it. found it made no difference. had some ok days, some bad days. kept busy working, then had a kid in 1992, so my mind was kept focused on other things while i just put up with the pain.
                            so now the kid is 14 (major stress), the job is no fun (major stress), the neuro pain is getting worse and the abdominal pain...well...it's like the proverbial straw.

                            so back in the hands of the doctors i put myself. took 2 months medical leave. everything they have done has made me sick or done nothing. i am overly sensitive to drugs (for the nerve block, they gave me 1/6 the amount of conscious sedation they give others, at my request).

                            to me, narcotics are the last things i will try as i know exactly what my reaction to them will be due to experiences prior to sci. that's one reason i asked if ppl take vicodin and still function. plus narcotics are not all that likely to affect the neuro pain, imo. i have some alcohol every night as it provides me a little relief and wine helps me eat (i only eat dinner...eating causes me to get very antsy, uncomfortable, etc. wise knows about ppl having that problem, i think we talked about it once and i know he's posted about it here). my point in mentioning alcohol is i will obviously not mix it with narcotics. but if there is a narcotic that allows me to function and get through my work day, i wouldn't take it at night.

                            one thing i think some newer ppl to all this may not be seeing from my perspective is over the years i managed my pain ok and also built up a fair tolerance for pain (i don't think i'd know if i had appendicitis as that pain would probably just feel like a really bad day and i'd try to wait it out).

                            but now, with all these years, the neuro pain is doing exactly what i feared; it is on the increase. then the abdominal pain on top of it has finally brought me to my knees (figuratively). i have built a life for my son and me over the yrs, i depend on my work health ins. (and the paycheck is quite a bit better than ssdi), so that's where i'm at.

                            this is long enough thx if you got this far. i was just trying to explain to those who have asked questions.
                            btw, does craig still do the surgery barry corbet had? where they cauterize the hyperactive nerve endings in the spinal cord? not that i'd have it (they wouldn't do it at c7 level anyway), i was just curious whatever happened to that. it worked for barry. maybe wise knows?
                            Last edited by cass; 4 Jul 2007, 10:28 PM.

                            Comment


                              #15
                              My goodness Cass, you're quite the superwoman to have accomplished so much under such circumstances. The only part I can relate to personally is having a 14 y/o son, and yes that is a handful all on it's own, but in many ways it sounds like one of the least of the issues you're dealing with.

                              I'm not a medical professional, but fortunately we have some around here to offer some advice. I can hardly think what to add. I very rarely say anything about this openly and I know it could present problems in your situation with your son at home (not to mention legalities), but it sounds like you just *might* be a candidate for some sort of cannabis-based plant to help your eating situation and perhaps your pain.

                              I can't even imagine how you've succeeded in continuing to work under such circumstances, plus function in every other area of your life. My thoughts will be with you and I sincerely wish the best for you in finding solutions to the challenges you face.

                              And people wonder why I'm so passionate about pain research.

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