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Thread: Diladud - Neuropathic Pain - Dr. Young? Anyone?

  1. #1

    Diladud - Neuropathic Pain - Dr. Young? Anyone?

    Hi everyone,

    I've been on the forum for quite a while now and have always had pain but it seems to be getting much worse. I'm a C5/C6 incomplete quad for 5 years and have been exercising the whole time. I have gained back some function and quite a bit of sensation.

    Has anyone tried Diladud for neuropathic or central nervous system pain? My pain has quadrupled in the past five years. It's getting to the point where I have no energy anymore to do anything due to the pain. It's the frozen legs, nails in my legs, cramps (yes I can feel my lower abs now) and my hemorroids are always killing me. I take Vicodin but it doesn't touch it. Bacoflen, Neurontin(sp?), and Zanaflex do nothing for me.

    Any advice?

    Deb

  2. #2
    Senior Member
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    Pain...

    Well, I for one certainly have empathy for you... having the severe pain myself now for the last 2 yearsof my 2.5 year old inury. I know what you mean when you say nails in your legs... its the worst pain I can even imagine... and NO ONE understands it unless they have it. I WISH I was just Paralized and did not have this pain. The chair... no sweat (I can manage that)... the bowel and bladder... Awful... but still I can get through it... but this level of pain... is absolutly mind altering. It has changed me as a person. I hope something new comes our way for this type of pain. The only thing I have tried that seems to take the edge off slightly is: SLow Acting Morphene called Avinza and then break through Morphene 2-3 times a day. I have tried every other combination that I am aware of... or nearly everything... and to no relief. Neurontin... made my life a bizzare dazed and confused nightmare. I hate to see people blame things on drugs... but in this case, I realy truly believe it made me nuts for the most part. Maybe try the drugs Im on and see what happens? Let me know if you hear of another combination that works. David Berg will tell ypou combinations are the best bet. I agree with him. Thanks, Mike (Florida)
    Mike (Florida)

    Cant we get 1 do over?

  3. #3
    Senior Member alan's Avatar
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    Dilaudid did nothing for me. Neuropathic pain requires high doses of opiates (if they work at all), and with higher doses come more side effect problems.
    Alan

    Proofread carefully to see if you any words out.

  4. #4
    I'm lucky in that I don't think the pain I've been experiencing for the past 2 years is neuropathic in nature. I just have to find out what's causing it and get it fixed. Hopefully. Easier said than done.

    But I do know that oxycodone (aka Vicodin, Lortabs, Percodan, etc.) doesn't even touch the pain. On occasion I'll get my hands on a couple dozen pills and try to take a mini-vacation from the pain. I get good and high but the pain remains. In some bizarre way I think it makes the pain even worse. Or it tends to make me dwell or focus on it.

    The only way you'll know what will work for you is to personally try it. That's if you can find a doctor who's willing to work with you.

    Best of luck Deb, Mike and Alan.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

  5. #5
    Deb,

    Has anyone looked into the possibility of trying ketamine with you? I am looking into it with a friend of mine.
    Mary
    1FineSpineRN

  6. #6
    Senior Member alan's Avatar
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    Has anyone used Avinza? I'll be giving it a shot.
    Alan

    Proofread carefully to see if you any words out.

  7. #7
    If you are having 24/7 type of pain,the vicodin as you already know,is woefully inadequate to even realistically touch this type of pain.Before going onto yet another short acting type of med,your best bet would be to try some sort of long acting med such as oxycontin or MS contin and see how those do for you.when you have non stop chronic pain 24/7,it would make sense to actually need full coverage over a 24/7 basis and you would never ever recieve that from any type of short acting med.i had absolutely no pain relief whatso ever til I started seeing the wonderful PM i started with about two and a half years ago.I am on many other meds besides the OC but all together and taking my last dose of the OC right before my normal bedtime,gives a constant flow of pain meds without any real interuption which will cause the whole pain cycle to start right back up and you will be just trying to chase down the pain vs keeping it within a mosr controlled range,neuro pain is just sooo incredibly hard to treat espescially using only narcotics.but i do very strongly feel that without the addition of a long acting nrcotic,my suffering would be much much worse.i also have five seperate issues that cause very different types of pain.the OC really works well on my c spine pain but not really fantastic on my central and RSD pain.but i have alot of other things going on in my knee,where i have the RSD and it does help to reduce the pain there that is being generated by other structural problems and a huge bakers cyst.

    but I would very highly reccomend trying the long acting meds before attempting yet another short acting med.while IV Dilaudid works really wonderfully and lasts a bit longer,for some reason,the oral form of dilaudid does not seem to work quite as well and also appears to lose its effectiveness much sooner than other short acting meds.like maybe only two hours,realistically as compared to like four with something like percocet.

    Good luck and i hope you will check into the LA meds.they really offer you much better overall pain control without that roller coaster effect you get from just taking the short acting meds thru out the day.but unfortunetly,unles you have a very well informed PM doc who is totally aware that the OC,which is actually supposed to last for a full twelve hours,at best will only give realistically around only eight to ten at best luckily,my PM is aware and has me on every eight hour dosing Vs the every twelve ,you may have to speak up if you qre using it and it appears to lose its actual effectiveness only after about eight hours.Most docs will drop your dosing down to every eight,but only if you tell them that it is not feeling like you are getting the full twelve hours of coverage.it IS a very good med for me anyways.Firesmurf

  8. #8

    Hello!

    I have had surgery on my L5-S1 disc, Disc Replacement, with Neurological symptoms down my right leg, It has been going on for 3 years now. After surgery my back pain did not subside and the leg pain has gotten worse, to the point of ER visits and pain pumps. My leg will go numb randomly from the knee down, usually causing me to fall. The pain management spec. I am seeing put me on Opana ER 40mg 2 2 times a day, and Lyrica 300 mg 2 times a day and diladud 8 mg for break through pain. These medicines have controlled the pain to the point of allowing me a somewhat normal life. I can go for walks and lift up to 10lbs now. (I used to be an avid hiker and weight lifter, Outdoors) so this is not a great life for me, but this combo has seemed to work for me.

    I know my injury is nothing compared to your's but i thought i would let you know this is what worked for me. Good luck and I can only hope you feel better!

    -Mike from colorado
    Quote Originally Posted by angel7 View Post
    Hi everyone,

    I've been on the forum for quite a while now and have always had pain but it seems to be getting much worse. I'm a C5/C6 incomplete quad for 5 years and have been exercising the whole time. I have gained back some function and quite a bit of sensation.

    Has anyone tried Diladud for neuropathic or central nervous system pain? My pain has quadrupled in the past five years. It's getting to the point where I have no energy anymore to do anything due to the pain. It's the frozen legs, nails in my legs, cramps (yes I can feel my lower abs now) and my hemorroids are always killing me. I take Vicodin but it doesn't touch it. Bacoflen, Neurontin(sp?), and Zanaflex do nothing for me.

    Any advice?

    Deb

  9. #9
    I used to have Dilauded in my baclofen pump. It would work for a little while and then I would have to get it turned up. That went on for the whole year I had it, getting to the point where it was almost dangerous in me. Then one day when I got my pump replaced, the incisional my back opened up and I had to have it removed, and I lost the Dilauded from my pump instantly and went through major withdrawals. At one point, I thought an IV pole was a nurse that was ignoring me while I was asking for help with something so I was yelling at her, I mean it. LOL
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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