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Almost off Opiates



  • Joel1QJJoel1Q Posts: 332
    edited 03/21/2019 - 12:51 PM

    Keep up the battle Joanne.  Those last ones are the hardest.  Cheers!

    L3-S1 ALIF Feb 2018 and 

    L3-S1 PLIF Laminectomy and Fusion March 2018

  • Hi everyone
    To those of you cutting down on or eliminating pain medication from your life I wish you all the success possible. I also pray that without that tool you are able to have a quality of life you deserve. As I have said I went  off Oxy and it was hell after being on it for over 20 years. Reason better pain control, health, money and the current trend but sadly when I went back to a low dose did not get the relief I was so hoping for. 
    I read time and time again here and other places plus asked several doctors just how long once off is your system free of the pain meds. So many different answers wish there was some information a person could use to get the correct answer. Of course I know we are all different but a general amount of time would be helpful. 
    I will pray for you all that your life becomes better in so many ways.

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  • Hi everyone, just checking in. I'm still doing pretty well with the "weaning". Although the low pressure systems we've been having are tough! Anyway, I have a question, sleep has always been a problem for me but in the last few weeks I'm having trouble staying awake! Seriously, every time I sit down to read I fall asleep and fight to stay awake to watch a movie or anything for that matter. And then I can't wait to go to bed at night and although I'm up a few times, I go right back to sleep! It's actually been frustrating and not long ago I had the exact opposite problem. Never thought I'd complain about sleeping too much, lol. Add to that, my stomach has been a mess and have to eat tiny amounts of food to keep it somewhat happy. Both these things seem counterintuitive. Anyone else have these issues? I am on huge amounts of gabapentin but have been for years so I can't imagine it's that. Praying things are going well for all of you! Thanks so much for your support. 

  • Joel1QJJoel1Q Posts: 332
    edited 03/30/2019 - 1:42 AM

    it’s 27 days of ZERO MME for me.  

     still not easy but this week was the best physically for since my surgeries.  1 year 3 weeks post second op.  I did the most walking this week, and being able to power through the foot and leg nerve pain i actually walked almost 5 total miles today, in .5mi increments, per the advise of my PT (don’t do it all at once) 

    I find at pain level 3 or maybe a brief 4 I can get through it after .2mi it comes then goes, and the nerve pain subsides to 2 or 3.  I’ve had level 5 nerve pain and that’s ‘I can’t walk, and it better not get to 6-7 or I’m heading back to low dose opiates’.  Never knew my pain scale and tolerance before  I am such a baby when it comes to the sharp pains, things seem more dulled lately, which is good   

    Sherri, did you go off completely, then go back on low dose and didn’t get the relief you wanted?, or you didn’t get the relief you wanted while on your low dose, as you’re still weaning ?  I hope you’re doing well, my pain Dr said 30-45 days is what it takes to get these evil opiates out of our system I’m determined to get to day 45 and then see how pain baselines  

    Joanne, I feel like I take gobs of gabepentin, and when I was weaning from opiates I was always tired and wanted to be sleeping.  Nauseated too, but never vomited once.  How much longer is your wean?  Go slow as your body tells you.  And enjoy the sleep any way you can get it   

    Thanks to all who are supporting those that can get off opiates. I can’t believe I was 370mme at one point last summer. My brain is sharper, I have more energy and I hope it lets me string some good days together for a change. 

    L3-S1 ALIF Feb 2018 and 

    L3-S1 PLIF Laminectomy and Fusion March 2018

  • So very happy for you Joel!!! I'm learning spacing and pacing at the Behavioral Center and it's the only sane way to go. I don't remember the last time I experienced that low a nerve pain level, good for you! A 6 is about my norm but I'm still determined to deal with it in other ways. Right now, walking 5-10 minutes in the pool is my limit. I was doing much better a few months ago but had an acute flare up and those take so much time to come back from. I'm weaning at 2.5 mg every 3 weeks or so but these last few are tough. I'm at 15 mg per day right now so hope to be done by late summer. It's SO tempting just go faster but I know better. I'm stunned that you came from that high a dosage!! You deserve some kind of metal for sure but I guess the satisfaction of having done it is enough and I'm praying that 45 day mark is the magic number!! 

    Thanks for letting me know you had trouble staying awake during your wean. Do you think you will ever cut back on the gabapentin? I take 3600 mg a day!! It seems so extreme but I've tried to cut back even a little and the pain is vicious. I just hope I get some energy back as I wean off this nasty stuff. And I'm going to pray you have a string of really good days! 

    Sherri, thanks for your encouragement and may you have more good days along the way! I think we are about the same age so our bodies don't bounce back like they once did, mine doesn't bounce at all anymore, lol. So we plod along happy to be able to do that. Blessings to you all! We couldn't do this alone. 

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  • Joel1QJJoel1Q Posts: 332
    edited 04/01/2019 - 11:16 PM

    Spacing and pacing, I will remember that in my first behavioral pain therapy session in a couple days.. my brain continues to get sharper and my foot pain is the same...Joanne, I did mess with Gabapentin dosages by mistake and I paid for it   I’m toying with 3000mg up from 2700 and will ask the dr next week about increasing as my adding 600mg at night seems to really help my neuropathy pain more than anything.   

    I also quit cymbalta last week and feel no different...

    This week I thought I’d give it a go to cut out CBD OIL/Tincture due to cost.  I continued to do vaping of both high cbd (little to no THC during the day), and flower and vape cartridges at night with higher THC, but 1;1ish levels. Again after 3 days I feel no difference, except The ONLY thing impacted is sleep, so I’m trying different teas and natural bs before I beg for Xanax next week at my monthly pain medication management dr spot..  my fantasy team next year will be named BENZO-GO   

    Full disclosure, last night My 28th day post OPiates, I absolutely had to take a single pain pill. As it was I couldn’t fall asleep until early morning.  Thanks to no CBD, melatonin/ val root mix   There is so little dosage of the latter two in the pure hemp CBD oil but it definitely is impacting to sleep, I tried non thc CBD only and that didn’t work  for me to sleep.  Also full disclosure, I have had insomnia since I was 25, I’ve gotten better sleep since November without benzo meds than ever, but I just can’t afford the MC at the levels that have helped me post op  time to trim the budget .  

    During my last few months I have been having  cervical like related pain symptoms, like I did 5 yrs ago before I shed 50lbs. Numbness in fingers of both hands, pain in my left shoulder, and a really strange overall occasional nervous system overload. I think the latter is medication related.  my last neurologist visit she ordered a cervical MRI, which her email a couple weeks ago said was ‘normal’ ... I have not had a chance to get my hands on the images or reports yet   

    My shoulder is the worst, a single knife stabbing me in my left rotator area, not radiating like 5 yrs ago. , it was a 5-6 level and yep, that’s my pain tolerance   Within 35 min of taking one of my remaining Oxycodone 5mgs, pain was gone   My neurologist follow up is not for about a month, so I’ll try heat and ice again tonight to see if I can avoid THE PILL  

    Good luck to you all trying, if you can tolerate it it’s worth it. 

    L3-S1 ALIF Feb 2018 and 

    L3-S1 PLIF Laminectomy and Fusion March 2018

  • Joel1QJJoel1Q Posts: 332
    edited 04/29/2019 - 12:42 AM

    Hello all you opiate titration subjects, I hope you are succeeding and handling the resulting level of pain you are left with. 

    So it’s about 8 weeks since I’ve been completely off opiates.  I’m not sure if my GI system has just not yet returned to normal because of the opiates or other issues, but I have ibd ibs symptoms or something else. I have to eat like a bird or I’m in pain, my PCP has no idea and has sent me to a gastro dr. 

    The mind is still getting sharper and sharper, I judge by jeopardy answers I can actually get right, instead of being ‘uhhhh... I should ...know that one....’

    I’m seeing pain / med therapist and a talk therapist, and   while my PM Dr did approve and prescribe a temporary benzo to help with anxiousness and sleep, it’s not really working well as it did before. However the PCP wanted to increase the Amitriptyline dosage to 25mg and eliminate the benzo due to dependency, and the pain / sleep therapist agreed.   Unfortunately while increase in Amil may help some (50% of the time I have less pain at night)  it hasn’t helped my sleep as they hoped so far but it’s only been a week.   

    The therapist also is trying to adjust my sleep schedule.  Wake up at the same time no matter when you go to sleep.  I find myself begging for Xanax at 3am (instead of White Castle), and I sleep a total of 2-3 hrs very broken sleep, and am exhausted when I get up.  I try roughing thru it during the day but it’s impossible not to fall asleep nearly mid sentence  it’s impossible to work   

    I’m considering restarting the sleep CBD, but like Teresa posted in another thread it makes me heavy in the gut, well heavier than the Gabapentin and Zanafex makes me feel. I will try another week on the no benzo high Amitriptyline tact and see how she goes, all in The name of progress and ultimately no pain, which seems less likely but maybe I can deal with the pain in other ways, non surgical. Trying to stay positive is challenging but the talk therapy is helping  

    My PM Dr wants to try 8% caspacian on my feet and is trying to get insurance approval, 1 hr 4 patches for foot at $800 per patch, (if insurance approves then why not medical cannibis or stem cell, but that’s another tangent).  Sounds painful!!!! 

    He says he has nothing else except a pain pump to offer at this point and doesn’t feel any kind of additional surgery would help.   My last dr effort is a Neurologist appt I have upcoming, there’s always hope !

    L3-S1 ALIF Feb 2018 and 

    L3-S1 PLIF Laminectomy and Fusion March 2018

  • Hi Joel1Q
    Yes I did go off the Oxy for 3 weeks after taking pain meds for over 24 years I needed to improve my tolerance level. I have tired and failed several times. No I did not get the relief I wanted I was on 3 30mg Oxy a day and dropped down to 20 mg 2 times a day then to 10 mg 3 times a day. The worst was the drop from 20 mg to 10 mg. I made the decision my PC doctor  and Orthpedic surgeon was not happy about it they made comments like "you will suffer beyond words and it's your choice" They knew I would go through hell and they were right. The thing is after the withdrawals were over the left pain was enough that I know without a doubt I need them as a tool. I guess it is how you look at pain medication evil yes they do effect our system but for me and many others they are a necessity so I am grateful my doctor agrees. Pain can destroy a person as you know and life should have some quality to it. If a person can not use them why would they use them? I am a one who is beyond angry right now at those who have theirs taken away. But also I believe you better do whatever you can besides pain meds to help yourself or a doctor should not write you a prescription. 
    I never judge what other people take or what level of pain they are in. We are all so different and things can be manageable for one and not for another. One thing to keep in mind like a doctor told me "once you go off or cut back it makes it difficult sometimes for the doctor to then increase them if nothing has changed". 
    I wish you and the others who are doing this the best.
    Take care Sherri

  • Hi everyone. Well I bravely took the step to drop another 2.5mg this week. I'm just amazed at how seemingly such a small amount can kick your butt! The sweats and chills, watery eyes and runny nose, not sleeping (of course that's always an issue) the anxiety that Joel mentioned. I get some relief from that through relaxation therapy I learned at the Behavioral Pain Management Center. 

    To be honest, I can't imagine going lower than I am now (10 mg per day) but hey, I couldn't imagine being where I'm at either. I tell myself I don't HAVE to do it but I do really want to. I just want to be free of it and see if what they are telling me is true, my brain will eventually deal with the pain as well if not better than the narcotics. 

    I know it will take awhile for my body to "reset" but I'm going to see it through. If it's any consolation, Joel, my digestive system is starting to wake up, still has a long way to go and I'm not sure it will ever be like before my injury and multiple surgeries but it's better. Realistically, I'll probably never be off the huge dose of gabapentin I take or the anti inflammatory but if I can shake the Percocet, I'm having a party!! It's scary to think about so, I won't think about it :).  We press on one day at a time. Shalom 

    (no I'm not Jewish but I love the word, it means a sense of well being and peace deep in your soul) 

  • Been offline for a bit and just now getting caught up on a couple threads. 

    Sherri, I’m sorry that you had to go back on opiates but at least you went to zero for 3 weeks and got a good baseline, and your situation needs a certain level of opiates to have a better quality of life than you could without them  

    EVERYONE IS DIFFERENT ... I keep hearing that, and it’s true, I can handle my pain without opiates but there are other issues .  

    It’s a trade off with the side effects and thank God my baseline level pain is tolerable with no opiates, it’s been more than 3 months off Opiates which is a feat, and they are there as breakthrough for when the pain is just too much and won’t allow sleep, I’ve done it about 5 times.  Found out how fast two oxy 5mg can clog up the gastro system, which is not fun.  

    Then there are the nerve meds - Gabapentin 2700mg/day, and Amitriptyline which has been increased to 50-75mg at night to help sleep, with a sleep aid called Belsomra, plus the muscle relaxer zanaflex 4mg 4 times a day — honestly I thought my brain was waking up then that seemed to stop improving a few weeks ago, maybe correlated to Amitriptyline increase from 10-25mg but I’m sleeping better and have less nerve pain   

    The brain fog associated with Gabapentin and all the other drugs/side effects seem no better now, I’ve got that heaviness in my gut area that just feels weird, almost like when they moved my insides back into place at the end of my anterior surgery, things didn’t quite go back together right.  I just don’t feel right in my gut, nausea no vomiting, no massive problem, but the  brain fog and tiredness keep me from doing much each day, and I force myself to do things. And when I do basic things, an outing to dinner, brunch, shopping, I get so tired I have to recover a couple days in order to do it again.  I have days where I get a decent sleep but am still so tired I can’t keep my eyes open after waking only an hour.  I’ve been scoped tested bloodwork and all is normal, I’m told it’s just the meds and side effects. I guess I have one option to try and wean off Gabapentin first, which I know Ron has done but it’s such a hard process I’m not anywhere near being strong enough to do that  

    Now 15 months post op, my doctors have said there is nothing more they can do for any of my symptoms other than manage the nerve and other non opiates . So I’m resigned to have permanent numbness and tingling in my feet preventing me from walking more than .5 mile, and shooting pain intermittent in both lower legs which pops up at various times but is worse at night, and radiculopathy sciatic pain in left glute and leg, plus the ongoing battles with presurgery low back and SI pain.  Only thing I can do is continue PT and staying active and doing the cocktail approach and balance the various treatments to find the best pain relief without opiates (unless the pain is intolerable and affecting sleep) and somehow get a handle on the other side effects

    Good luck to all of you getting off opiates, it’s hard work but it can be done.  

    L3-S1 ALIF Feb 2018 and 

    L3-S1 PLIF Laminectomy and Fusion March 2018

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