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Need help on what to try next

iowarobiniiowarobin Posts: 1,268
edited 06/11/2012 - 8:40 AM in Pain Medications
Hi, Most of you know me on this site. I just went to my Ortho the first of the month. He did MRI and CTs to see why I am still in so much pain, 1 year after my 2 level PLIF and 4 months post op for hardware removal. He hasnt found anything wrong. I had another disc that has a small tear in it at l3-l4. But at the time he didnt feel it was bad enough to fuse. So that is a possibility. But for right now, since I have had 9 surgeries in the past 2 years, he wants to give it six months more to heal. If I still have the pain, then it will be a discogram to test the other disc. He also feels that my pains meds are not working for me and has my pain level to high.
So, I am going back to my Pain Dr on January 25. I am currently on Fentanyl 100 every 3 days, and oxycodone 30 mg every 4 hours for bt pain. I do take the oxy every 4 hours as it is that bad. The fentanyl patches really decrease after the 2nd day.
I was on morphine sulfate prior to the fentanyl patches, and they didnt work for me as they make me so sleepy and disfunctional.
Has anyone been on fentanyl and had to change and what worked for you? He mentioned Methadone, and from what I have read, that bothers me. I am just confused on what will come next. I am funcional, the meds I am on, just in too much pain. I dont want to go back to being a zombie. Anyone help me? I just want to be able to research it before I go for my appointment. Any help would be appreicated. Also Morphine makes me physically ill.


  • I am new here, but I've had several spinal surgeries (5) in less than 2 years. I used to be on Fentanyl 100 every 48 hours and that stopped working for me, so my new PM Doc started me on Methadone. I really like the Methadone. It does not give me any euphoria feeling, or dizziness and it actually works very, very well for my pain. So far, it has been the greatest pain medication that I have been on.

    I had some aprehension when he mentioned putting me on Methadone, but he told me that as long as I am monitored correctly (and I am), it should not be a problem. I have been on it for a while now, and I absolutely love the pain relief that I get from it. I hope that your issues can be resolve. Take care,

  • It is sometimes a misconception to believe that the more medication we take the easier our life will become and as you rightly say, it debilitates our function and capacity so dramatically we are soon scrambling back down that progression of volume medication that we had so much expectation initially.

    At least your doctor is supporting and believing you that the meds could be more effective and working collectively to find a more amicable solution. All of this takes time and it is never easy when we are asked to wait and see how it goes, I waited 12 months between epidurals and 18 months for my fusion, I understand that frustration of waiting for limited outcome.

    Getting that balance of adequate medication and reasonable clarity is always difficult and time consuming, many here are not offered the choice you have and we all need to keep the perception of what we read in perspective and give it a try, doing nothing is an option although not preferable. You could start with a lower dose, does anything make it not hurt as much, and does pacing impact on your pain levels.

    For the future you would be a nine surgery individual attempting a potential fusion and you would have to consult your surgeon as to the inherent risk involved, you are not at that point yet, we can only work with our current symptoms not what we think we may have or equate any dire potential. That wait and see policy is not easy, although it is better then proceeding at a faster pace than is necessary and then regretting any future discrepancy or inherent pain.

    In increasing medication the intention it to keep those peaks and troughs to a minimum and in increasing our volume of baseline medication increase that threshold so those ups and down decrease. Does your Bt pain follow any pattern, if you rest totally what effect does this have on your overall pain level.

    Functioning while feeling dizzy all the time is difficult and getting that balance of doing what we have to do, rest and capacity an ongoing problem.

    I wish you well in finding a suitable recipe of medication that works for you and managing your ongoing pain.

    Take care John

  • >:D< to you! Can't add any info on other medications -- just dropping by to say hello and let you know I'm thinking of you. I hope the time flies by before your 1/25 appt. Some good pain relief will certainly lift your spirits.

    I just checked your bio and didn't see that you were on lyrica or neurotin (SP?) -- have you already been on one of these nerve pain medications?

    Wishing you less pain in the days ahead,

    Take care,

  • I am just waiting for my appt on Jan 25 with my Pain Dr, and see what he has to say. I have tried Lyrica and neuortin, didnt do anything but make me sleepy.
    I hope that he can find something that will help the pain, maybe switching will let me go to lower doses. I hate being on meds. I have discovered that by limiting my driving and riding in a car, that I dont hurt as much. I rest and walk on treadmill. Do a few things around the house, no blt of course. And the days drag on. I am just so ready to be normal, or as close to it as I can.
    Winter is here again, and I find myself cooped up in the house again. Last year was the fusion, and this year it still is. We have so much snow and ice, I get scared of falling, so I have my trusty cane with the spike on the bottom. Just a little security against falls. My fusion isnt completly solid, so I worry about that. Anyway, from the snowbanks of Iowa. Hope all is well with you all and wishing you a painfree day as possible. Love, Robin
  • giving the methadone a try. Once you get past the side effect of sleepiness, it is truly an excellent pain reliever that works to reduce both neuropathic pain and mechanical pain. It can be used with a breakthrough medication if needed, but I would hold off on the breakthrough meds until an adequate dose has been reached as a baseline.
    Some cautions with using methadone are making sure that dose adjustments are done on a weekly rather than more frequent basis. Methadone has a very long half life which means that it is in your blood plasma for a substantially longer time frame. It can take a few days for it to reach maximum bpl's so you really need to give it a few days before deciding it is or is not working well to relieve your pain.
    If you have a history of prolonged Q-T syndrome in your heart, it needs to be monitored closely.
    I've heard over and over that it is very difficult to stop taking, and I disagree with that. It does take longer to withdraw from, but with the guidance of your PM, it is easily done.
    The big plus is that it is very cheap on the scale of copays/prescription pain reliever costs.
    Fentanyl is a good pain reliever, and it is not uncommon for it to not work as well after 48 hours, instead of the 72 it is usually changed at. This is because the original studies were done in patients who were either bed ridden primarily or recieving palliative care ( end of life) and they didn't move around much. It is common knowledge in the PM community that with more active patients it usually lasts around 48 -60 hours before patients start to experience a reduction in pain control. So, you aren't alone in experiencing that.
    If you are taking your breakthrough's every 4 hours, it may very well be time to look into the methadone and see if it gives you the pain control you desire, without having to rely on the breakthrough doses to carry you through your day.
    Good luck,
  • Hi Robin,

    I'm sorry to hear you're having so much pain. My mom is on the 100 fentanyl patch with hydrocodone/ tylenol for breakthrough pain. Last year her pain level rose and nothing was helping... her doctor added a 25 fentanyl patch at the end of day 2/beginning of day 3, then had us remove it at the end of day 1 of the new patch. That, along with the hydrocodone seemed to actually work for her when the pain was so bad. (when she was in the hospital earlier this year they left the 2 patches on for the full 3 days...but at home that seemed to be a bit too much)

    Most of the time, the 100 fentanyl patch does the trick for her, she rarely needs to use the breakthrough meds or the 2nd (25) patch- otoh, she is for the most part, bed bound, so she doesn't move about much.

    Hopefully, when you see your doc they'll have an answer for you. Maybe run the idea of this past your doc to see if he/she thinks it would help you too? I can say that while it makes her a little bit more tired when we need to add the patch, she feels a Lot better by the end of the first day.

    Good luck and many pain free days in your future!
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