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  • #31
    Have you seen this?

    http://pain-topics.org/pdf/IntractablePainSurvival.pdf

    I was actually better prepared to talk to my doctor after reading a few things like this. I am as good at explaining my pain as I am responding to posts here.

    Here is another but is more technical.

    http://www.chirogeek.com/Chronic_Pain.pdf

    It talks alot about medications in both. You can check off a lot of those that you have already tried.

    I truly did not mean to make you feel as though I was tired of seeing your posts.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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    • #32
      Ok. Sorry, I get a little sensitive and/or moody sometimes.

      No, I'm not seeing anyone at Emory. I was at Emory hospital last year when I had C. Diff and cellulitis and that is where Emory's pain services visited me.

      I am seeing a new doctor that I just started with last week. He is going to try me on Nucynta ER again. I took it last year and got some considerable relief then it seemed to poop out but I had a lot of other issues going on (infections, etc) so that may have affected it.

      PM me and we can talk more.


      Originally posted by darkeyed_daisy View Post
      Oh NO NO NO and I didn't mean for my post to sound like you took it.

      I wasn't meaning to sound as if I was lashing out.

      Holy cow...I want you to find relief and I have been where you are. I will probably be there again. I nor anyone else is tired of your posts.

      I am surprised that they took the Fent patch off so soon.

      I am so sorry you are having to go through this. Honestly I know desperation too and I wish there was an easy fix.

      So you are seeing someone at Emory. I thought you were still looking for a doctor? I am sorry. I really didn't mean for my post to sound as bad as it obviously does. I got no relief from Topamax either and I took if for a year or a little more. I have tried all the other ones too but my doctors always made me give them a couple of weeks to a month before I dismissed them as not working.

      I really didn't get control of my pain until I learned the CBT and how to relax myself. It works for some and it doesn't for others.

      Comment


      • #33
        I sent you a message.
        T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

        My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

        Comment


        • #34
          Originally posted by crabbyshark View Post
          There's evidence that blood thinners inhibit RhoA. It'd be interesting to see if low dose aspirin and lithium worked better for your pain than lithium alone.
          Interesting. Thanks for that. Anything is worth a try...especially the way I'm feeling right now!
          Clayton
          "Wheelie Wanna Walk!"

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          • #35
            I had success with the 100 mcg but it falls off real bad after 48 hrs. I felt relief from it after about 3 hrs. but they tell you to always have one on 24/7 and if your lucky you might find a Dr. who knows they don't last 72 hrs. like they advertise. One of the hardest things for me to remember to stay ahead of the pain. I hate to be on pills everyday of my life but I need to get over that because it is my life now. Remember stay ahead of the pain and it will help a lot!!!
            1 Corinthians 13:13

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            • #36
              Originally posted by keiten06 View Post
              I had success with the 100 mcg but it falls off real bad after 48 hrs. I felt relief from it after about 3 hrs. but they tell you to always have one on 24/7 and if your lucky you might find a Dr. who knows they don't last 72 hrs. like they advertise. One of the hardest things for me to remember to stay ahead of the pain. I hate to be on pills everyday of my life but I need to get over that because it is my life now. Remember stay ahead of the pain and it will help a lot!!!
              I saw my PM doctor today and he would only give me 25mcg patches for 9 days then he would up it to 50. This is after I told him I had previously used 75mcg patches and they helped a little. You would think he would start at 50 or 75 then go to 100.

              I'm so desperate... The worst pain of my life. I'm afraid to go to sleep because I know I'll wake up screaming in pain and start all over again.

              I was going to go to the emergency room but I don't know if they can help.

              I am trying to find another PM doctor but they all have these long drawn out procedures for getting records, "assessing" you, etc. I don't have all that time... I almost pass out from the pain sometimes.

              Comment


              • #37
                Are you using marijuana? You sound very anxious and scared and I am very concerned about your welfare. When people are in pain they do whatever they need to do to get rid of the pain. I would also recommend you get a team approach to your pain, not just focusing on the medications but the coping with pain on a daily basis.

                Did the PM provider give you Fentanyl patches? As with many neuropathic medication treatments they take a while to get a therapeutic level to help.

                pbr
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                • #38
                  Fentanyl is fairly easy to overdose on and all the law suits I have seen against it are due to overdose through wrongful use. It makes sense the PM Dr. wants to work you up to a level that is effective. Take the warnings that come with the patches seriously it may save your life. Fentanyl is not something to be taken without restraint or foolishly. I'm not positive of the numbers but I think it is supposed to be about 100 times stronger than morphine. The SCI Nurse knows more I'm sure. Do Not Do More than your Dr recommends.
                  1 Corinthians 13:13

                  Comment


                  • #39
                    Originally posted by SCI-Nurse View Post
                    Are you using marijuana? You sound very anxious and scared and I am very concerned about your welfare. When people are in pain they do whatever they need to do to get rid of the pain. I would also recommend you get a team approach to your pain, not just focusing on the medications but the coping with pain on a daily basis.

                    Did the PM provider give you Fentanyl patches? As with many neuropathic medication treatments they take a while to get a therapeutic level to help.

                    pbr
                    I was, but I stopped using when I started seeing the PM doctor as you're not allowed to have marijuana in your system while seeing him. They drug screen randomly. I was up front with him the first time I saw him and told him that the urine would show marijuana, as I was doing it several times a day, daily, but told him that I stopped. He told me yesterday that the level in my urine was low (from last time) so he could tell I had stopped.

                    I am very anxious and scared, although a little better today. Today is my 1 year mark from my SCI, and I am anxious/scared because of the future dealing with pain, and that I am not where I wanted to be, independence wise.

                    Insurance wouldn't pay for the way he wrote the Rx for the 25mcg patches, I guess he wrote it for enough patches to start with 1 and then go to 2 if necessary. Anyhow, they got it straightened out today and he went ahead and bumped it to 50mcg, telling me to give it 3 days to reach a therapeutic level. I'm hoping it helps.

                    I'll start another thread on this also, but I have a medication for sleep called Restoril (temazepam) but at the 30mg dosage it doesn't make me sleepy. So, I was so anxious yesterday that I took one to see if it would help w/ my anxiety since it is a benzo as well. I noticed that it helped with my pain! I tried it again today, I felt my pain level creeping up, so I took another capsule and within an hour or so, my pain decreased again. I know I can't take temazepam daily, so I wonder if something like it would help.

                    Comment


                    • #40
                      Valium (diazepam) is a longer acting benzodiazapine. I think several here have found decent pain management using a combination of opiates and diazepam.

                      But opiates and benzos can be deadly in combination by causing respiratory depression-make sure your doc knows that you're taking the temazepam and I would NOT take it on the same day you put on a fresh fent patch.


                      Docs typically start with the lower dose and move up until you find your pain maneageable.
                      Don't make any changes to your dosages without getting your doc's approval first-he/she is trying to find the right dose and combination of drugs that will make your pain bearable without the risk of overdose.
                      And closely read all the warnings for using a fent patch safely.

                      Comment


                      • #41
                        Originally posted by avictoria View Post
                        Valium (diazepam) is a longer acting benzodiazapine. I think several here have found decent pain management using a combination of opiates and diazepam.

                        But opiates and benzos can be deadly in combination by causing respiratory depression-make sure your doc knows that you're taking the temazepam and I would NOT take it on the same day you put on a fresh fent patch.


                        Docs typically start with the lower dose and move up until you find your pain maneageable.
                        Don't make any changes to your dosages without getting your doc's approval first-he/she is trying to find the right dose and combination of drugs that will make your pain bearable without the risk of overdose.
                        And closely read all the warnings for using a fent patch safely.
                        Alright, the temazepam is actually my Mom's, I took it in desperation yesterday and because I wanted to sleep. I know I shouldn't take meds prescribed to me.. I didn't take the temazepam while on Fent. But I filled the Fentanyl today and the clonazepam is in my pharmacy profile, actually due for pickup tomorrow, and the pharmacy didn't say anything about it or warn me? I wonder why?

                        This doctor won't Rx "anxiety" medications, he told me to see a psychiatrist. My psychiatrist has me on 1mg of clonazepam (klonopin) 1x/day which I've taken for years. I've tried taking the klonopin during the day but it doesn't have an effect on pain, maybe because I've taken it so long or the dose isn't high enough?

                        If I try to get my psychiatrist to Rx a benzo for pain I have a feeling he won't do it, and the PM doc won't do it. So, what do I do? Look for another psychiatrist or another PM doc? How could I explain to either doctor that I took someone else's med and it helped? I know either one will frown on it and the PM doc would likely fire me as a patient.
                        Last edited by jbridges9; 04-24-2013, 10:59 PM.

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                        • #42
                          Again, you sound very anxious and scared. You need to clean up your medications. You are self medicating trying to control your situation. You are not helping yourself but taking pills from other family members. You are complicating your medical condition by all of this self medicating.

                          Stay away from benzodiazepines. The only one you should be on is if it helps with spasticity or tone. You need to make an appointment with a provider to specifically clean up your medications. Benzos are hard to wean off of and need time. You may need a pharmacist involvement to help with that.

                          Be honest with yourself and your provider about what you are taking.

                          pbr
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                          Comment


                          • #43
                            Originally posted by SCI-Nurse View Post
                            Again, you sound very anxious and scared. You need to clean up your medications. You are self medicating trying to control your situation. You are not helping yourself but taking pills from other family members. You are complicating your medical condition by all of this self medicating.

                            Stay away from benzodiazepines. The only one you should be on is if it helps with spasticity or tone. You need to make an appointment with a provider to specifically clean up your medications. Benzos are hard to wean off of and need time. You may need a pharmacist involvement to help with that.

                            Be honest with yourself and your provider about what you are taking.

                            pbr
                            I take the Klonopin PRN so it's not an every day thing. I actually haven't taken it in 2+ weeks because I forgot to a new prescription and didn't get it until the other day.

                            If the benzodiazepine (whatever it may be) helped with my pain, I should still away from it? Can I ask why? (Not being defensive, just curious)

                            What do I need to clean up about my meds? I'm on fewer meds than I used to be.

                            Effexor XR 150mg BID, Baclofen 20mg TID, Gabapentin 800mg QID, Clonazepam 1mg every day prn, Amitriptyline 100mg qhs, and now the Fentanyl 50mcg every 3 days. The oxycodone I don't take because the 15mg dose doesn't help. I tell my provider at each visit if a med isn't working, causing problems, etc.

                            6 medications. I'd like it to be lower but don't see how? Although if the Fent works for me, I would work with my PM doc to wean off the Gabapentin since I don't think it does much if anything for me.

                            Thanks for your input and advice!

                            Comment


                            • #44
                              hey bridges9 - pbr SCI Nurse has a good point about maintaining a health respect for use of benzos. Withdrawing from opiates is uncomfortable but it won't kill you. Benzo withdrawal can be medically dangerous or life threatening. I agree with her about being really cautious with benzodiazapines. Withdrawal can be lethal whereas withdrawal from opiates is just miserable. I think Bethany once aptly described getting on these meds as taking out a loan that you are going to have to pay back sometime later, and it is not going to be fun.
                              Hang in there. I know you are suffering and it is an impossible task.

                              Comment


                              • #45
                                Diazepam in SCI is typically rx'd for spasticity and pain/spasticity. You could discuss with your doc trying diazepam for spasms/pain rather than klonopin, or perhaps for sleep.
                                Better yet check with your PM doc about using the klonopin-it is legitimately prescribed and maybe, maybe the klonopin + new fent protocol will work. But call his office and check first to be safe.



                                Don't for Chrissake ever take anything not rx'd for you 1) your PM doc will fire you ASAP because he doesn't want to get sued, harassed by the DEA if when/you 2) OD.


                                Work with your PM doc to get the dose of fentanyl to where you get some relief and see how that works. I kinda think your pain relief from the temazepam was because you had a big dose of short-acting benzo in your system and were so baked nothing bothered you. I don't think any doc is going to rx potent, short-acting benzo's to treat pain. You could tell your doc that you've heard that valium is used for pain and spasticity and see if he'll consider it. Right now though he's gonna concentrate on getting your fent dosage and whatever you use for breakthrough pain optimized.


                                You cannot just start/stop these meds. If your system was used to klonopin and you completely quit taking it you may have been in some degree of benzo withdrawal, which is very dangerous. Baclofen withdrawals are also deadly. Opiate withdrawals are not typically deadly for a healthy person. All those other meds have 'discontinuation syndromes' too.

                                If a low-dose long acting benzo helps with pain there's nothing wrong with having them in your pain management program. Benzos have a bad rep right now and baclofen is preferred despite almost identical risks. Schoolkids are learning that they can get a buzz from baclofen too so there will be a tragedy eventually.

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