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Almost off Opiates

Joel1QJJoel1Q Posts: 325
edited 02/09/2019 - 9:47 AM in Pain Medications Forum

But not sure if I can take the pain(s)

Have been on very high doses since my two lumbar surgeries last year - Oxycodone 30mg, 6x day and morph sulf ER 30mg 3x day. 360 mme. As of today I am off Oxycodone and only take morphine 30 2x day.  The titration schedule from my doctor has me going back up on Oxycodone 5mg 3x day while I take morphine down over the next 9 days, then 1.2.3 drop the Oxy and be done with opiates (forever  ?)   

The idea is to see how what my baseline pain is and if I can deal without taking opiates. Based on how bad it’s been since I was on 10mg Oxy/day I can imagine a low dose (relatively) 5mg at night to get through this. 

 I am still taking 600mg Gabepentin and 4mg Tizanidine 4x day. Dr just added cymbalta.   I have horrible nerve pains mostly below the knees as one of a few residual surgical effects.  My feet are in constant pain after walking .25 miles so I can’t  get much walking exercise in right now.  PT with major stretching and exercise ,some swimming, and light cardio are all I can handle.   I get loback steroid injection Monday to try and alleviate the foot pain.  I get acupuncture and massages regularly for very tight muscles which spasm like crazy at night. I continue to try to find the right mix of MM, that certainly takes the edge off but makes me stupid and on top of the gabepentin just makes me stupider and sleepy.  


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  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 279

    Your progress is exciting and a testament to your self-discipline and determination. Hopefully your nerve pain will lessen over time and you will be even better! Your progress and success is encouraging to me. Thanks for sharing! Keep up the good work! Jerome

  • Hi
    Fantastic you have achieved the point you are at and if anything a huge positive is that if you have to go back on opioids you will get more relief with less possibility. 
    Has your doctor said "no more" meaning he or she will not go that direction period? If that is the case that is worrisome to me since I have been down that road before. What is his reason for you not taking them at all? Don't misunderstand me I think all doctor's should monitor and try to get us taking pain medications as less as possible for the right reasons period. I just don't want you to be one of those who ends up not having them as an option if needed. You need to ask is this it or what? 
    It's all about quality of life if your doctor has a plan and it works then that will be the best. But if you get to a point that you are suffering too much you need to make it clear how you feel. 
    The current trend is to take us off pain medications hope that is what is happening here. 
    I get rambling due to old age ;) but also I am very passionate about the negative attitude towards use of opioids for pain control.
    Wish you the best and please take pride in what you have been able to achieve.
    Keep us posted on how you are doing.
    Sherri

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  • Thanks for the encouragement Jerome and Sherri. The doctors have said I may need to go back up to some level of opiates to relieve pain but since I was on such a high dose right after surgery it’s impossible to tell where my actual pain is.   And I’ve been afraid to go off cause I for one do not deal with pain very well nor the withdrawal symptoms.   And they have said the knowing what the lowest possible opiate dose necessarily wouldn’t be accurate unless I went all the way off, got a baseline and then gradually add back in Oxy or morphine again, or some other treatment.  So Sherri, I think I’m good if I have to go back up. Also    I am uncertain that the cymbalta helps at all.  Right now it’s cbd 1:1 3x day seems to help more than anything , 

    Yesterday, I feel my pain. Get settled. Try my MM and then am able to move with less pain though I’ll admit it’s a little froggy in my brain when I do that. Same today after I get through withdrawal symptoms .  On weekends that’s fine but during workweek I have no avenue of relief and find it impossible to focus on tasks. 

  • MikethepikeMMikethepike MIchiganPosts: 470

    Joel,  does that morphine three times a day really help? Also do you have a lot of muscle stiffness?  I feel a lot of my problems are due to taking medication and not being real active .  Also my torso muscles are very stiff. Would you say you feel better with less opiates in your system ?  Your problems seem similar to mine. Take care and God bless 

  • HI
    That is so encouraging to read that your doctor will work with you and he is right going clear off is the way to go. Just think how excellent that would be if you did have to use them again to have better pain relief with less. You are stronger than me. These past months I did go down from 30 mg to 10 mg Oxycodone ER then back on the 10 mg it was hell. I even had break through pain meds thankfully. l have decided l need to be tough like you quit it all in order to get where you will.
    You say cbd is helping you glad you have that option. Utah is still in a battle mode even though it was voted in by the people there are those who want it changed. So who knows when it will be a option now which is a huge disappointment for those who need it.
    So keep up the good work and keep us posted
    Sherri

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  • Joel1QJJoel1Q Posts: 325
    edited 02/11/2019 - 9:36 PM

    Mike, at this point, I really don’t know if the Morphine works or not.  The day I dropped from 60mg to 30mg was not fun. That was yesterday.  Last night was horrible worst nerve pain I’d had in months.  I laid in bed 4 hrs before I finally took of all things a Xanax, slept all night and back at it today , albeit very stiff.  

    Had a caudial injection this afternoon and we’ll see how fast and effective that is, the idea is get the nerve pain under control. This is not the pain dr I see for med refills since post op, but he is high up at a university pain clinic I was referred to after my official diagnosis of failed back surgery, neuropathic lower body pain (likely due to surgery, and not neuropathy) and of course chronic pain.    I hope I can get to ground zerOpiates but wow, what a journey.  Wished one could sleep through it  

    No matter how bad I felt all night I am making it a point t to exercise regularly. I am down to one 1:1 PT and 3 times in the gym per week starting today, my insurance reset my PT sessions and tripled the copay... yeah, not happy, it’s always something   

    I do have muscle stiffness in my loback around my fusion at L3-S1, but ever since my surgery I’ve felt like all of my muscles hurt, just some less than others.  I’m told that is usual due to all the pain and other meds  

    the best part of reducing meds??? Less trips to CVS lol



  • Joel1QJJoel1Q Posts: 325
    edited 02/18/2019 - 4:57 PM

    An update, I’m off my morphine 30 1x day and am only taking oxy5 4x day, tomorrow 3x day, the pain is consistent but as long as I stay ahead with the methods I’m using it’s tolerable, only had two sleepless nights. So dropping 5mg every three days gives me 12 more days, though my PM dr said if I get to 10-15mg / day,  I should be able to just stop completely without much side effects.  I cannot wait for the nausea to go away so I plan on expediting that to maybe this weekend when I can rest with no work stress.  The drop off from morphine definitely gave me some awful nausea but it comes less often today. 

    I would say Mike it didn’t really help my pain now ( a year later) but I thought it did 10 months ago when I was put on such a high dose 30mg 3-4x day I thought it was the thing that cut through and finally helped get my pain under control 2 months post op. 

  • This isn’t easy and is taking forever.  Pain flaring up is not helping.  I’ve had SI issues and a left glut muscle issue that at times revisits painful sciatic feelings I haven’t experienced in a while.   I still wonder about whether I should have done suboxone and gutted it out for a week just to get the weaning over quickly.  I was told that if that was in my records that I’d be labeled on paper as an opiate addict.  

  • MikethepikeMMikethepike MIchiganPosts: 470

     Good job Joel     Keep going 

  • Hi Joe so are you off now completely? How are you doing do you think you will be able to handle without any? You have to think about your quality of life that is what is so important.
    You know I have had so many doctor's tell me Suboxone would be a last resort. for that exact reason would be labeled as having a drug problem. Back before I got more involved with what was given me I was given it by a doctor who did not have a clue years ago when it first came out. Got so sick and had the worst panic attacks ever so off immediately. 
    I hope you will reach your goals and the outcome will be positive.
    Best wishes Sherri

  • Thanks Mike.

     Sherri I’m down to a single Oxycodone 5mg at night for a whopping 2 days in a row.  Before that I stretched it to 18hrs a couple times, but I’m finding that electric pain in my legs is much higher every night.  Last week was hard to sleep but I added some valerian root three nights ago and I am impressed with how well I slept through the night with only one time awake, eight hours solid each night and for me that’s saying a lot.  I hear you about quality of life, that’s why I did the surgery when it comes down to it, and I guess even with the pain I have now, compared to pre surgery my quality of life is equal. I’m hoping for some progress with PT and giving the opiates time to get out of my system before declaring that I need to stay on a low maintenance dose, but that may be likely.  I guess the longer I can stay off it the lower the dose it may take. 

  • Great news Joel,

    I was up last night an hour after I went to bed.  Horrible pain across my upper back.  I could not get comfortable or sleep, not even one wink.  I had to take a pain pill.  The lowest I can go is dilauded x 3 daily.  If I go lower I am in pain and give in after an hour and take one.

    I hope you can sustain your reduced opiate intake.   I wish I could get by on less myself.

    God bless

    dmo

  • Thanks Dale and Nut, I’ll definitely read up on side effects of valerian root. So I think I experienced the same with efficacy over time, and need to be able to change it up periodically.  I am going to start trying late afternoon exercise at the gym and see if that helps.  

  •  Hi Joe1Q
    If you can do it taking that much pain meds that is good for you. Sleep is a huge problem for so many I cannot remember the last time I got more than 3 hrs. in a roll. You get to know the neighborhood and what is prowling at night :D
    So many are looking at alternatives to help with the pain like MM etc. I have never heard of Valerian root have to read up on it. One thing you should always let your doctor know things you are taking or using. I don't know all your health issues but there can be interactions that are not good.
    Excuse my memory not so good but have you asked your doctor about the pain creams that are available?
    I am hoping you can get where you want to be and with less pain. It takes strength to go through that process of eliminating pain meds.
    Take care Sherri

  • Sheri, thank you. I did speak to my PM doctor about valerian root this past Monday, who knew I was on CBD with melatonin and valerian in it, and asked what he thought of it. He claims he didn’t know that it possibly helped promote better sleep in some people.  

    After but mentioned some concerns I researched and it dawned on my my headaches the first two days were directly related to the dosing and I dropped to half dropper and they went away, but the effectiveness was drastically reduced.   I am now not doing it at all and going to ask my dr about going back on some kind of sleeping aid besides Belsomra which just leaves me too groggy.  

    And I can say I can hopefully convince my dr to provide a benzo Rx because  that Tuesday 3/5 was day one of ZERO OPIATES.  I’m so happy I achieved that goal, now just to stick with it and not rely on pain meds unless I absolutely need it, acute flare ups I guess. 

    BUT  I’m afraid I won’t be able to go off completely just after 5 days of success, realizing the pain that I’m in especially at night.  I have new back pains I didn’t have preop which are in a different area than my surgery and hurt way worse than 3 weeks ago when that started and I was still on 60mme.   I have old back pains that are numb and not sharp like they were originally which were nothing when I was at 60mme.  Now they stop me at times. And I have the lingering post op neuropathy pain mostly below the knees and nearly constantly at some level up to a 5-6 throughout the past week.  I took the week off originally as a way to get through this finally wean off opiates  and MM has helped quite a bit, but it’s expensive and I have no idea how I can cope all day without anything, MM or opiates, to ease the pain.  

  • Sherri, I didn’t answer your pain cream question. I’ve not asked him, but I did tell my PM Dr early on in my recovery that I had started using CBD cream, then someone suggested trying a higher THC in a salve, to which he said ‘whatever works for you.’  He suggested nothing else.   

    I apply to my feet every morning before I do my sock struggle(I can’t believe it’s so hard to put on socks after a year, another thing to get used to). The salve seems to work for me in that after I do it my feet have less pain, and if I forget it I seem to have more pain that day.  There are no other ingredients besides olive oil and beeswax, and the ‘proprietary essential oil blend’  and on the top it says ‘High THC’ but gives no percentages or any other info but the brand name which I won’t say here  

    I know it might be placebo affect, but if it works....why not. problem is it’s only available at MM stores or delivery, and my city or state regulated dispensary doesn’t carry it, so i search forever to find it and buy two tins which lasts me about 3-4 months, put on sparingly, and costs ~$50/tin.  

  • This is day 8 of zero MME.  the neuropathy like foot and lower leg pain at night is really difficult to handle, during the day it’s better.  I’m used to a 1-2/10 pain level while on pain meds, right now it’s pushing 4-5 /10 and my patience for dealing with this at night is wearing thin after only a week.  

    Anyone gone through this and know if there is a certain length of time that it takes for the opiates to exit your your system?  And what was your pain level before after titration?  and did you have to go back on low dose opiates, or another pain remedy?

  • Hi Joel,

    I applaud your ability to come off the pain meds.  I don't think I could ever do it.  I have tried a few times to cut just one pill a day out and I am so miserable.  I cant sleep without the pain meds. 

    Are you being pressured to stop your meds or is this your choice?  I personally don't care what others think as I want to be as comfortable as possible.  I would like to cut back because of digestive issues.

    Please do what is best for you.  No one should suffer in pain.

    God bless

    dmo

  • Joel1QJJoel1Q Posts: 325
    edited 07/31/2019 - 12:20 PM

    Thanks, it’s good to know what we write of our experience inspires others. 

    I completely want off pain meds forever, I hate what they do to my mind, bowels and something else, but I forgot....

    Dale, brother I read your other threads and you just humble me.  Faith, hope and love, always.  I am sorta being forced off opiates but not because of opiate wars or anything, just my second PM  dr believes some of my nerve/neuropathy pain in my feet, legs was caused by being on such a high level of opiates after my surgery.  My first PM dr, who writes my Rx’s, has encouraged the same but has flat out said I likely will need maintenance levels and indicated if I went down to zero and couldn’t take the pain, going back up to low levels of some kind of pain meds would be ok. 

    Nut, thanks also to you for making me question valerian root.  It was my second pain Drs titration schedule I followed from about Jan 1 on. I had been on a slower weaning schedule starting last July but I didn’t do well, so o wanted to get off sooner rather than later. 

    I did suffer the most unconscionable pain after my two surgeries and was not allowed more than low dose Norco which did zero for my post surgery pain.  It took at least a month to prescribe any morphine or Oxycodone and then my first pain dr kept raising my doses when nothing worked for my pain. I believe my body finally healed some to lessen the pain, pain meds did not do much for me except make me  cranky. 

  • Joel1QJJoel1Q Posts: 325
    edited 03/17/2019 - 10:06 PM

    Day 14

    I had a very rough week with my foot pain, and more lower back SI and other odd pains I’ve not felt in some time coming back, but today has actually been the best day of the week.  I found towards the middle of the week I was not taking my Gabapentin and zanaflex every six hours as normal because I’m no longer taking opiate pain meds every 6 hours and I just started slacking - bad idea.  Plus I ran out of the daytime 30:1 CBD and thought ahh, I’ll try it without.  Now set my alarms to take the nerve and muscle meds, except when I sleep because sleep is still Golden, and replenished the cbd oil...it really did make a difference with all pains today. 

    I’ve noticed without the pain meds after my workouts,  the next couple of days I have much more muscle recovery pain which I don’t like   That can make it difficult to get going the day after.   

    I’ve been told 30-45 days to shake all the opiate effects off, can’t wait. 

  • MikethepikeMMikethepike MIchiganPosts: 470

     Hey Joel, just wondering if you have body heaviness? Keep up the good work take care and God bless

  • Hi Joel, I've been watching your progress because I'm on the same path although I haven't been on meds other than huge doses of gabapentin and moderate doses of Percocet. I'm working on the Percocet first and would like to see if I can at least cut back on the gabapentin because I can fall asleep mid sentence! But don't sleep well at night, go figure. I also have terrible memory loss.


    I've been going to a Behavioral Pain Management Center where we learn tools to better manage pain without drugs, it has been very helpful. Last week we talked about how opioids mess with your brain chemistry, I'm sure you probably researched that. When we introduce opioids to our bodies, our brains stop producing natural pain killers like endorphins which actually do a much better job at controlling pain than an outside source.  My doc says that my body has no clue what my baseline pain is and when I get there, my brain will adjust to what it needs to do. I'm not foolish enough to think I won't have any pain but others who have been successful in getting off opioids tell me their pain really isn't any worse without all the nasty side effects, like having a functioning digestive system! I'm down to 3- 5/325 tabs a day. I'm planning to go down another 5 soon. I've had some acute flare ups of piriformis and sciatica pain but haven't fallen off the wagon. I'm determined to do this. I've only been on  the Percocet for two years after a L5/S1 fusion and a failed neurostimulator. It's a tough climb but can be conquered and  fellow travelers make it easier. Onward and upward. 

    Joanne

  • Nut the falling asleep after having no opiates in your system is a terrible feeling.  I’m sorry you dropped to zero too fast, I have heard many problems from taking it too fast. 

    Joanne I believe that my baseline pain is way better than the drawbacks of being on opiates, at this time.  I have my first pain management counseling session in 2 weeks, and am glad it’s warming up so the pool is warmed up as everyone says it’s good exercise and adds to staying fit.  

    Mike, I feel heavy a lot. Sometimes my muscles feel like they just are so in pain and most of the time it has no relationship to how much I exercise.  Sometimes I feel I have a muscle issue where all my muscles sting with pins and needles , separates from my foot pain which I’ve had since surgery day.  

    Hope you all feel better on hump day!

  • Wow you wouldn't think just cutting back another 2.5 mg oxy would be so tough. I'm at 2.5/5mg tabs per day now. This has been the worst as far as withdrawal, I feel like I couldn't jump out of my skin, now isn't that an ugly thought lol. Thank God I have been learning lots of relaxation techniques and biofeedback in my class, it really does help. I was going to wait until April to do another cut back but the doc was talking about how the stress pain cycle affects our digestive system (I have lots of digestive issues) and he told us about a woman he had in class whose digestive system had totally shut down due to chronic pain, stress and opioids. Yikes! I'm convinced more than ever this is the right path for me. I've been going to the pool and my class and putting into practice what I have learned and I can do this! Day at a time. I can't wait until I can celebrate being opioid free! Hope you are all doing well! 

  • joanne2jjoanne2 Posts: 341
    edited 07/31/2019 - 12:21 PM

    I've been going really slow, even slower than was suggested by the pain management nurse. I know there will be withdrawal symptoms no matter how slowly I go. I read some where that the lower doses were the toughest. My pain has been difficult but besides all the new tools I'm using ice heat, TENS, lotions anything not drug related and still going to PT. I had to cut back on the muscle relaxers because they were giving me bad stomach pain. I've been on them for 2 years, since my fusion surgery. I won't cut back any more now for a month or more depending on how this part of the withdrawal goes. Thanks for all your wisdom, I really do appreciate it! 

  • Joel1QJJoel1Q Posts: 325
    edited 03/21/2019 - 11:51 AM

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

  • 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.
    Sherri

  • 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: 325
    edited 03/30/2019 - 12:42 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. 

  • 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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