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

  1. #1

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

    After many months of suffering with full body below injury central neuropathic pain, I finally had it controlled with 75mcg Fentanyl and 15mg Valium 3x/day (sometime less.)

    After about a month, the burning returned and it has got more and more intense back to the original level. I saw the PM doc and he told me he was out of ideas and to find another doctor..Not what I wanted to hear.

    I have tried: Neurontn uo to 3200mg, Lyrica up to 600mg, Savella 50mg, Klonopin up to 4 mg, IV Morphine 4mg (hospital), IV Dilaudid 3mg (hospital), Toradol 30mg IV (hospital), Klonopin 2mg 3x/day. Valium 15mg 3x/day, Fentanyl 100, etc

    My PM doc said he was out of ideas.

    There's got to be other stuff out there. No Dr. in this state will Rx methadone...

    Any help? I'm 31 years old, I wasn't ready to give in to pain. I can't live like this but didn;t tell anyone that because I don't want to be in a psych house.

    Jason

  2. #2
    Hey Jason -
    How long have you been injured?

    I think if you tried methadone, it would soon be added to your list of drugs that don't work.
    Have you read books on chronic pain. On amazon.com are good books on this. Pain Management Guide. Survival guide.
    Don't expect a drug to make it go away !
    You are stuck with this problem - pretty bad, huh ?

    Early after my injury when I wanted to be free of the NP pain, I went to a Biofeedback Practicioner who had a lot of experience treating chronic pain. He taught me that chronic pain is my new companion and you won't get rid of it. You have to get rid of the struggle of you versus the pain - that may be the only thing you can control.
    The fight is exhausting, the idea that the pain meds will eradicate the pain may not allowing you to accept ownership of the pain. What are you going to do?
    Are you seeing a therapist who is experienced with chronic pain? This would be a good idea. The biofeedback specialist also did this and helped me see that the pain and the response to pain are two different events. One can only control the response to pain.

    I'm 56, injured at 45, so I don't know what it is to be younger like you. You are looking at a lot of years of chronic pain. Very tough. Sorry.

  3. #3
    Senior Member
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    I really feel for you, Jason. I've been in the same situation to lesser or greater degrees for decades. Not sure that medicine is the answer, though. One time Tegratol worked really well for me and after about 6 weeks it "pooped out" (that's the technical term). I think the pain figures a way to navigate through the drugs after awhile. It broke my heart when it stopped working. Methadone helped for a few months but made other parts of my psyche so much worse, I had to get off it. Even so, I take meds now which they don't cover the pain and I still suffer.

    What works best for me is to be distracted with something I'm REALLY interested in or doing hard exercise that I enjoy. As time goes on those things are harder to achieve so now I'm working with mindfulness meditation and plan to try THC tincture. I just got a TENS device which emits a low level electrical pulse through electrodes that I put on either side of my back bone just above the injury. It's a physical distraction that will influence the pain while I'm wearing it. Good for when times are really bad.

    The psych house was of no use, either. Just left me in the same ol' pain place and feeling totally crazy to boot. "Giving in to the pain" was not a solution for me.

    So I have no silver bullet, only compassion. Try to spend you mind's time on any nanosecond of lesser or no pain, if you have any. Good luck to you, Linda

  4. #4
    Senior Member NikkiMaya's Avatar
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    Man do I feel you. I am 29, so I know how much it sucks to be at this stage of your life and living with severe chronic pain. Not that it is ever right, but you don't find too many people our age dealing with this problem. I have been suffering with neuropathy for 20 years.

    Clearly you have tried a bunch of different medications, but your pain management specialist should not be out of ideas. It is fairly routine in that branch of medicine to have intractable cases where you try loads of things and nothing seems to work. Trying seven medications (not including the hospital) and then giving up doesn't seem right. You have a condition that has to be managed for life, so this doctor needs to go back to the drawing board to come up with a new plan. It is frustrating for all involved--but I am sure he would rather be on the dispensing end and not the one with neuropathy!

    As for me, I have a terrible time with medications and typically can't reach a high dosage because the side effects get me or there is just no effect whatsoever. I am getting another prescription for medical marijuana because I don't know what else to do. I am currently unmedicated and it is hell on earth. Being medicated was also terrible.

    The one thing I would recommend you try is Nucynta. Most people have not heard of it as it is relatively new. It is considered a "light narcotic." After two decades of trying everything I could think of and having everything fail, Nucynta is the only thing that ever worked. Unfortunately, it did not last. The effect I had from the Nucynta was completely remarkable. My pain disappeared 100%. I didn't know that life like that was even possible. I was able to get up on crutches and start walking for the first time in years. It felt like I was reborn. But as quickly as the drug worked, it just stopped eight weeks later. It was pretty devastating. I read a long forum posting from people that took it and a substantial number had a similar experience.

    Even though the Nucynta abruptly quit working for me, it still gave me a lot of hope that one day I will find something that works and live a more normal life. I would still recommend trying it because from the posts I read, it seems that there are people that did get good, lasting results with it, and I would be really happy if you could be one of those people.
    In our world constituted of differences of all kinds, it is not the disabled, but society at large that needs special education...to become a genuine society for all. -Frederic Major, Former UNESCO Director General

  5. #5

    honest answers

    going on 13 years with cetral pain syndrome. Nipples down torture, which unfortunately understand.

    Tried everything currently titrating up with prialt, about the scariest drug you can imagine but the last remaing option.

    You need to find a doctor who will work with you and your taskis to comb the boards and web and make sure you note and try them all. I so hope you find som relief but it will be a long struggle to just chase through the drugs and cocktails.

    I never have along with a few here. Look at the painonline likely top thread it details my struggle. I'm working with atop doc who sadly admitted there is nothing but who would see if she could do enough to keep me here.

    I only take IT baclofen for spacity and the prialt which has yrt to do anything. No other drug or combo has offered anything.

    Dark angels follow me and their siren songs call me.

    Pax,

    Ket
    Last edited by ketamine kitty; 06-15-2013 at 06:27 AM. Reason: type like crap

  6. #6
    Senior Member
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    I DID go to psych house. This while I was in the hospital and I think 1X since home. Not been there for a bunch of years. I do not take any medication for psych or pain, although my pain is very minimal.

  7. #7
    What Arndog said seems to be the sad truth of the mater. Have you been drugged up since your accident? I found I wasn't in much more pain without the meds. You sound like a pill seeker, not saying you are, just that that might be the impression others are getting.

  8. #8
    Senior Member forestranger52's Avatar
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    I take 90mg of morphine at 2 am every night to help me sleep. I am suposed to take only so much throughout the day but save everything until night. Dosen't help a bit with my burning butt as I thought it would. Still, I usually only get a couple hours of sleep.

    Thank god for bag balm as it will kill the butt pain for some reason. Vasaline works also. The VA used butt paste which works too.
    C 5/6 Comp.
    No Tri's or hand function.

    Far better it is to try mighty things, to win glorious triumphs, even though checkered by failure. Than to take rank with those poor spirits who neither enjoy much or suffer much, because they live in the grey twilight that knows neither victory or defeat.

    Teddy Roosevelt

  9. #9
    Some of you guys have it all wrong - I know the pain will not go completely away. I am not a pill seeker. I am looking for something that will help bring some relief in my life. I would like to be able to do SOME of the things I used to do without gritting my teeth in pain. I would also like to not be so drugged up that I can't function or speak.

    I have been injured for 16 months.

  10. #10
    For the most part there is no magical pill you can take that is going to work all the time. From years of reading posts here and dealing with neuro pain myself there are not a real lot of answers. One thing at least for me though that does really help is getting a good nights sleep. If I don't get enough sleep (like at least 8 hours) my pain increases. #2 is staying as busy as you can and having purpose in life so you not focusing as much on the pain but focused on what you need to achieve on a day to day basis.
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

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