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Pain was finally managed with Fentanyl and Valiium then all hell broke loose

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    #16
    Well, for one thing, don't believe one PM doctor. I can't remember how many I had before my nuero surgeon sent me to a friend that runs a pain clinic. He waited a long time before doing that......it isn't something he normally does, but after watching my GP keep guessing who to send me to, he felt it was time I tried a good pain clinic. They try many different ways to help, not just drugs.

    Getting enough sleep and eating right is a help. The more sleep I lost, the worse the pain would get. I thought that if I found the right med, the pain would all go away, that won't happen. It helped when I realized it was there to stay, and I would be lucky if a med, or combo of meds, was found to help lower the pain level. And as long as you don't give up, I think most people do find something that helps.

    Trying to keep busy does help, and I have days I just don't want to move from my chair. I'd read where someone would say it helped, and just didn't believe it! But if you can make yourself move.....it can help. I've used writing postcards to people for a long time. Cost is the only thing that keeps me from doing it all of the time. And a few months ago, I started sewing again, that helps a lot too. I can't do the level of sewing that I use to do, but good enough to stay busy! One day I would really like to try painting, but I'm not too sure how that would go since most of my grandchildren draw better than I do! lol But it might be fun!

    Find a friend that makes you laugh, or watch funny movies! Laughter is good for you. Keep your spirits up the best you can. And I know many have probably already told you this, but just take one day at a time.....at least for awhile, until you can make plans. Try going back to school, if you can. I've always wanted to do that, but transportation is an issue for me, and the internet is out because all I can get is dial up, and that doesn't work. I know of at least two members that manage school with the pain, and a few than manage to work.

    There is something that will help, you just have to find it. I feel I'm still looking, and I try to not give up. We never know when a medication will be found for the neuro pain. So far, I don't think we take any med made specifically for neuro pain! My hope is they find something so I don't have to take any opiates anymore! They only numb us, and I prefer to use something that would actually help! But for now, I'll take what I can to get a little bit of relief.

    I wish you luck!

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      #17
      I found Marijuana to be helpful with pain. It certainly gets me to think about other things.
      Just another tricky day. C5/6 incomplete, 43 years out.

      You'll get through.

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        #18
        Originally posted by crypticgimp View Post
        a lot of the meds you indicated arent really effective for nerve pain anyway. some doctors have seen that drugs for depression, like effexor, also have worked for those with nerve pain. it is worth talking to an experienced pain management doctor about this. the only things helping me with my pain is oxycodone and intense dosages of antioxidants and diet change.
        can you elaborate more on the antioxidants and the diet change? no dr i've been to thus far has suggested thisl

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          #19
          Originally posted by smashms
          i am in agreement find another pain management doctor, ask around at shepard, they i am sure have people there that have been in your situation before, if not shepard where ever you did your rehab. so sorry you are dealing with this yet again but as many have said get up and move around i find when i am still or laying down my pain is worse. it is kind of like a double edge sword because in 1 way you don't think you can get up and move but in another way you are told to get up and move. it will get better Jason when i cannot tell you but stay strong and keep seeking out the right doctor with some answers for you.
          shepherd's pain mgmt group fired me due to non compliance because i hadn't seen all the diff providers they wanted me to because i was in the hospital near death when my my kidneys almost shut down. i didn't argue with them because they hadn't helped me n 6 mos anyways, nor were they suggesting things for

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            #20
            PM Doctor

            Can someone help me find a good PM Doctor in the Atlanta area? I am actually closer to the Athens/Gainesvillle area. I don't know what to look for, what questions to ask, etc.

            I will PayPal you $25 for a lead that turns uo good :P

            Thx
            Jason

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              #21
              I cannot recommend a good PM doctor in Atlanta; however I have been in your shoes and can give some advice. I have been through all the pain meds as well and really the only two I ever felt helped were Dilauded if your doctor will even prescribe it, it is a pretty serious narcotic. And currently have been using Butrans 30 mcg /hr, for some reason I find it superior to the Fentanyl,all Fentanyl did was make me feel high, and little for pain. But the Butrans works very well for me, and I usually use Norco 10/325 for breakthrough pain. Other great thing about the Butrans is you only have to change the patch every 7 days, so you can slap them on and get on with your life. May try asking your doctor about it for chronic pain as it really helped me.

              On a side note as a former weed smoke myself, I can definitely say really none of the weed strains will help your pain in my opinion, especially if the narcotics you listed before do not work for you. And I have tried every damn high potency strain there is. Sour Diesel, Super Skunk #1-#5, Hash Plant, and the list goes on forever, including honey oil 90% THC potency, Hash, Hash Oil you name it. Although eating a very large amount of Honey Oil did once kinda help, but only kinda. Personally weed makes my pain feel worse! So I leave the decision to try up to you, but it never helped my pain.

              But if you have given every thing else a try, give Butrans a whirl. It helps my pain a lot and I usually have a pain level of 8 constantly without it. But my pain is like a 5-6 lately much more tolerable. As there may never be the perfect painkiller, just look for one that at least makes your pain somewhat tolerable.

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                #22
                Originally posted by anthonyh View Post
                I cannot recommend a good PM doctor in Atlanta; however I have been in your shoes and can give some advice. I have been through all the pain meds as well and really the only two I ever felt helped were Dilauded if your doctor will even prescribe it, it is a pretty serious narcotic. And currently have been using Butrans 30 mcg /hr, for some reason I find it superior to the Fentanyl,all Fentanyl did was make me feel high, and little for pain. But the Butrans works very well for me, and I usually use Norco 10/325 for breakthrough pain. Other great thing about the Butrans is you only have to change the patch every 7 days, so you can slap them on and get on with your life. May try asking your doctor about it for chronic pain as it really helped me.

                On a side note as a former weed smoke myself, I can definitely say really none of the weed strains will help your pain in my opinion, especially if the narcotics you listed before do not work for you. And I have tried every damn high potency strain there is. Sour Diesel, Super Skunk #1-#5, Hash Plant, and the list goes on forever, including honey oil 90% THC potency, Hash, Hash Oil you name it. Although eating a very large amount of Honey Oil did once kinda help, but only kinda. Personally weed makes my pain feel worse! So I leave the decision to try up to you, but it never helped my pain.

                But if you have given every thing else a try, give Butrans a whirl. It helps my pain a lot and I usually have a pain level of 8 constantly without it. But my pain is like a 5-6 lately much more tolerable. As there may never be the perfect painkiller, just look for one that at least makes your pain somewhat tolerable.
                Butrans 30 mcg/hr? I had tried 20 and thought that was the highest you could go. Can you use a 20 and a 10 together?

                Weed makes my neuro pain feel worse too, altho any other pain it helps, but I don't even care about any other pain anymore!

                What dosage of Dilaudid were you on? My most recent Dr offered Dilaudid and Morphine Sulfate. Dilaudid 4mg did nothing. Dilaudid 3mg by IV doesn't help the pain but makes me feel good. ;P

                I have a whole of a BuTrans 20s in my drawer right now. How long do they take to "kick in" , I've heard 3 days.. is that true?
                Last edited by jbridges9; 21 Jun 2013, 8:22 PM. Reason: added text

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                  #23
                  Don't start the Butrans patches or change your meds in any way w/out talking to your doctor. Please.

                  Comment


                    #24
                    Have you tried Emory University Hospital? I know they have a pain management group affiliated with them.
                    CCS/Walker C6...it's a long story

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                      #25
                      Originally posted by avictoria View Post
                      Don't start the Butrans patches or change your meds in any way w/out talking to your doctor. Please.
                      I don't have one currently. They've all found me a difficult pain patient because the usual meds don't work on me so tell me to find another doc and give me 30 days worth of my fentanyl patches.

                      Comment


                        #26
                        Originally posted by lavenderthistle View Post
                        Have you tried Emory University Hospital? I know they have a pain management group affiliated with them.
                        They specialize in interventional therapy and won't manage your medication for you. They expect some other doctor to pick up their med mgmt?

                        I talked to the nurse in depth before I drove all the way out there...

                        Hard to find a good PM clinic in Atlanta that treats more than back pain and does more than injections

                        Jason

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                          #27
                          thoughts

                          I think some relief is a reasonable goal, note though, how many get none.

                          You also need to take the initiative to manage yourself. Do you have an accurate listing of all the meds, dosages, cocktails you have tried and when / how long, as well as other treatments, e.g. hypnosis, acupuncture, MBSR, TENS. do you have an accurate dispassionate description of your pain, where, when, triggers. These are helpful and show the docs your level of commitment. Note also the feds are after pain docs so the dismiss patients who do not follow guidelines etc. sometimes the why just doesn't matter to them

                          on a sad note neuro pain in all its variations typically matures for the first couple years post injury. often some of the "mechanical" nociceptive pain diminishes while the neuro advances. be prepared to wage the battle.

                          again don't rely on others, work for yourself. Trust me, most of them are out of their league when faced with us. We are not their norm, or baseline, and some see one of us so rarely they don't get it, believe it, or are lost no matter their commitment to their profession.

                          Finally do some leg work about pain docs in the area and their "mindset" it may take a consultation, but armed with your history, injury and goals, preferably sent prior for review, have a frank talk and interview them about their experience with your situation and their success.

                          good luck, fight, endure

                          Pax,

                          Ket

                          Comment


                            #28
                            Originally posted by ketamine kitty View Post
                            I think some relief is a reasonable goal, note though, how many get none.

                            You also need to take the initiative to manage yourself. Do you have an accurate listing of all the meds, dosages, cocktails you have tried and when / how long, as well as other treatments, e.g. hypnosis, acupuncture, MBSR, TENS. do you have an accurate dispassionate description of your pain, where, when, triggers. These are helpful and show the docs your level of commitment. Note also the feds are after pain docs so the dismiss patients who do not follow guidelines etc. sometimes the why just doesn't matter to them

                            on a sad note neuro pain in all its variations typically matures for the first couple years post injury. often some of the "mechanical" nociceptive pain diminishes while the neuro advances. be prepared to wage the battle.

                            again don't rely on others, work for yourself. Trust me, most of them are out of their league when faced with us. We are not their norm, or baseline, and some see one of us so rarely they don't get it, believe it, or are lost no matter their commitment to their profession.

                            Finally do some leg work about pain docs in the area and their "mindset" it may take a consultation, but armed with your history, injury and goals, preferably sent prior for review, have a frank talk and interview them about their experience with your situation and their success.

                            good luck, fight, endure

                            Pax,

                            Ket
                            Thanks, Ket. I have all of that and just filled out a "packet" of papers for a new PM doctor. He sounds promising and likes to try different things, not just a single drug type of doctor.

                            We'll see. My neuro pain is awful, constant, no triggers, jst always there. occasionally a valium works.

                            I also spasticity and spasms brought on from a recent hospital stay. I know I have a UTI and a bed sore. I was so sick I coidldn;t call to have them help me turn, I called Risk Management and threatened malpractice..waiting on a call back.

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                              #29
                              Yes my doctor combines the 20 mcg/hr patch with an additional 10 mcg/hr patch I beleive you can use up to 40 mcg/hr combined 20 mcg/hr patches. But I have not one that far up yet! But yes it is quite good, much less habit forming as well so I consider that a plus personally. Only thing it does not cover is sharp stabbing neuropathic pains, but I have Gabapentin 600 mg x4 each day for that so not an issue.

                              Tough call if it is going to work for you, but may be worth a try as you have already been through everything else it looks like. It is where I wound up after trying everything else much like yourself. Supposedly it has 40 times the gram potency of morphine so use with caution.

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                                #30
                                Also on a side note, this is my personal experience with using klonopin/xanax. I noticed that when I used them in conjunction with my pain meds they actually seemed to block and diminish much of the pain relief I received without them. So not sure what you are using them for is it anxiety? However Valium did not block the action and relief I would get from my pain meds. So maybe you should switch to Valium just my personal experience but it seemed to add to the effect of pain relief more Ativan may work too but I am not sure.

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