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Fentanyl Withdrawal...Any suggestions??

Posted , 11 users are following.

leigh65923
leigh65923

I have been on the fentanyl patch for over 15 years for neurogenic pain associated with MS.  I have decided I would like to decrease my dose from a 100 mcg patch every 48 hrs to every 72 hrs, but I am having very little  success.  The withdrawal symptoms I experience are just awful, I get just horrific leg cramps that I cannot control, they are just a nightmare, so painful that I cannot describe them.  I get the stomach problems and tiredness and constant yawning, those I can basically deal with, but the leg cramps are so hard to tolerate that I change to a new patch as soon as I feel as if they are about to start.  It is hard to believe that aI get such bad withdrawal symptoms from just trying to add 24 hrs to each patch!

I am also very tolerant to the drug. A surgeon tried to use it for anesthesia for a simple procedure and it did not phase me at all, so I was awake through the entire surgery.  They gave me so much trying to put me into a "sleepy state" that I ended up staying in the hospital overnight because they were worried about the amount they ended up putting in me.

Is there anyone out there that has successfully gotten off a high dose and long-term use of fentanyl?  I am really regretting that I started to use it in the first place, but it is the only thing that has really helped my pain and allowed me to continue to work and drive and not be all "stoned".

Anyone with any comments or solutions I would love to hear from you!

3 likes, 76 replies

76 Replies

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  • jocelyne44618
    jocelyne44618 leigh65923

    Posted

    Hi love its me  Jocelyne, how has your days been?  I am still off school at the moment One of my friends who I work with, contacted me today  as she is off sick and wanted to know how I was,  I explained, that at my last school meeting, my union lady who is supposed to support me and advise me  has not contacted me since the last meeting, she knew I was up set and in pain, but I pay my union monthly dues for her help, now I hear from my friend that she is not supporting other members of our school with  issues.  I had to go to see a lady, who writes a report to school after seeing me,with regards to how my phn and shingles are. Well I dont understand what is going on in this country  - school pays for my visit  it took me 45 minutes to drive to the centre of Cambridge, I arrived 10 minutes late and she took the next person waiting to see her in,  I then had to sit and wait around 35 minutes before I was called in, and arounde 15 minutes  she stood up picked up my coat  and showed me to her door, and well the report  I could have typed it, she  then sent me a copy and asked if the report was not as I felt it should read, I had 3 days to contact her secretary.  I have days when I feel that I dont want to get out of bed,  my meds dont seem to be working any more, the only way to get to sleep is to drink 2-3 glasses of wine every night, all I do is cry,  so what wronge  with me now???  I miss being at school, I miss the students (senior school) But Im not sure if I am up to it any more, walking to different parts of the school every 45 minutes to different lessons,   I wanted to talk to one of my freinds, but I had a letter from the school stating after my meetings, that I am not allowed to  talk to any other members of staff what happends in the return to work meetings., so of course my friend was upset that I had not contacted her for nearly 6 plus months,  Oh I wanted to talk to her, but could not incase my department told me off, so again Im in tears  when she called me.-  why is my life so down at the moment. sorry  I should have sent this on private but I have not done it.

    Take care love  big but gentle hug   Jocelyne  Cambridgetwisted

    • leigh65923
      leigh65923 jocelyne44618

      Posted

      Oh girl, I am so very sorry, that sounds like a horrible situation...your are not allowed to talk to your friend?  It is no wonder you are depressed.  I know what you mean about sleeping, it does not come easy for those of us in pain, and I cannot imagine the pan you must have, it makes my "teeth curl" (an old saying that sums up some things lol))  I hope you can find a reason to smile very soon.  I wrote you a private message that was full of "all about me", I am embarrassed to say.  This website is trying to shut down, so I will do the same, and hope I hear from you very soon!  Blessings to you!

       

  • leigh65923
    leigh65923

    Posted

    Hi there all of you.  I just heard that Prince OD'ed on fentanyl.  At the risk of sounding really insensitive, that sure makes thiings for us (in the US, anyway) even worse than before.  On the bright side, perhaps the tons of people that will now be forced off fentanyl will encourage the medical establishment to come up with a kinder, gentler withdrawal regimen.  I really don't mean to step on anyone's feelings about Prince one way or another, but the first thing I thought was, "Oh GREAT  that is just what we need. Demonizing folks on fentanyl even more."  Please forgive and/or ignore if I have hurt any feelings, I really do mean it in the best of ways.

    Always, Leigh

  • leigh65923
    leigh65923

    Posted

    Hi guys.. Last time I posted I was asking about Suboxone, and perhaps should have put this post there, but I started this subject line a long time ago, and it is close to my heart, so I thought I would update everyone who has wished me well over time.  I decided against the suboxone as soon as I looked into it.  Not for me.  I would have been forced to go to some dang drug rehab joint for my dose, that, alone, sounded less than optimal.  Cooties!!!  So, I actually found a doc that would help me with a taper.  I have been down to 75 mcg from 100 mcg since the middle of July, and am feeling just fine.  I waited until I was in full-blown withdrawal before I slapped on my first 75 mcg patch, thinking perhaps my body would appreciate it more if it was fentanyl-hungry.  It really has been a smooth transfer, I have not had horrible withdrawal symptoms at all.  Not looking forward to going down to 50 in mid August, but have no reason to believe it will be any rougher than the first decrease was.  Then I will do down to 25 mcg, then 12.5 mcg,  then I should be fentanyl free. YAY!!!   It is a lovely thought.  I have whined and cried to you all so many times, I am a bit abashed at how easy this has been for me.  I was given some xanax, clonopin and a gut drug, and I did use them the first couple of days, just to basically knock myself out.  I am feeling a little clearer, with a bit more energy.  The last 24 hr of the 72 is still rough, but no rougher than it was at 100 mcg, I must admit.  I am deeply sorry I have gone "dark" for so long...there are times when getting on the computer is absolutely the LAST thing I want to do. And, I wanted to be sure that this ease of decrease was for real, so I waited awhile.  I truly hope you all can do a taper, find a doc wlling to do a taper with you.  I will keep you all posted, and message my most special friends here.  We continue to be the face of fentanyl withdrawal, and I continue to hope that someone, somewhere is paying attention to what a nightmare it can be.  If it helps one person not start fentanyl, or encourages one person to try to get off, then all of our messages have done miracles!  You know I care about each of you, what an interesting lot we are.

    With love, Leigh

    • melissa7471
      melissa7471 leigh65923

      Posted

      I too am down to 75 from 100 with just minimum discomfort. I'm taping and doing it my way. Best suggestion ever. You have been a real blessing to me on this journey and I so appreciate it Leigh. Let's continue this together and get it done! I'm tired of being a prisoner!!!

      Melissa

    • deb73201
      deb73201 leigh65923

      Posted

      Hello 

      your doing great ! Don't rush it and happy you found a Doc that will help you . I am off the Fent patch it was a hard fast road I would never go that fast or tell anyone to do it like I did but I was so over it . I have my mind back and I am in a bit more pain but that's will be my life and I will try and get something better then Dilaudid . I feel so much better off the Fent and the hot flashes are gone . I know I was in a hurry to get off the Fent but you sound like your doing good ! Keep up the good job and you will soon be Fent free ! Email me I lost your with this crazy summer . Take care chat soon Deb,

    • Actiquser
      Actiquser leigh65923

      Posted

      Hi Leigh you have had a stormy road what with Dr etc and you are doing well with your taper.

      I was too impatient and did a fast taper with the patch going down 12.5 at every change of patch from 50mcg. Everyone has their own pace to go at. My patch should be changed today or rather taken of for good  and I have left it on (12mcg).

      Psychologically it's like saying goodbye to an old friend, we have good and " bad " friends. Is that mad or what ?

      I was warned that I might get very upset once I stopped, as fentanyl surpresses our emotions and my partner died suddenly a year ago. I did spend an evening feeling very sad and crying,what for, I do not know. I was just sad so keep the xanan for if that happens. it was only once thank goodness.

      I had to taper the oral fentanyl Actiq first and found that dreadful as I was always in a state of protracted withdrawal. I surprisingly found a faster taper over came that. I had less sweats/cold attacks.

      The best advice I got here was if you are feeling rough wrap yourself in a warm blanket and chill either in bed or on a sofa with a comedy movie. If you laugh it raises your seratonin levels. Exercise will help with this an exercise once a day even when you feel grim go out for a 1/2 hrs walk. Good Luck with your taper xx

    • leigh65923
      leigh65923 Actiquser

      Posted

      Hi there,

      Never got the oral Actiq, and I guess I am glad, as the withdrawal from the patches is as bad as anything I have experienced.  I am on month 2, down to 50 mcg and going out of my mind and body on bad days.  I was given clonopin, xanax and a gut drug to help with the withdrawal, and they do help, because if I take all 3, it knocks me out for 12 hrs!!! lol

      But I am still working, so this is not an option most days.  Going from 100 to 75 was a cake walk compared to down to 50.  All I can think about is when I can put a new patch on, although that is not all that different from the 18 years I have been on the patch, so why complain, eh?  If all goes to plan I will be clean of fentanyl by December, which sounds good to me, as long as the docs will still prescribe for the pain.  That is another downside of withdrawal, the pain I thought long gone has come roaring back to bite me, but that is life, gotta smile and keep on keeping on.

      Thanks for your advice, I live in the desert, so chills would be a welcome thing, actually I usually get the sweats, and worst thing of all is my legs uncontrollably spasm until I think I will lose my mind, it is so uncomfortable, like my body has a mind of its own.  I guess it does, come to think of it.  I am not a fan of most comedy, so when I am at the end of my rope I put on some good worship music and cry out to God how grateful I am for His love. And I have a service dog that I walk almost every day, I live out in the country so it is a great place to walk in nature.  I am so sorry about your loss, that is a tough one, to put on top of withdrawal is a heavy thing to bear.

      Keep fighting the good fight!

      Leigh

  • melissa7471
    melissa7471 leigh65923

    Posted

    Hey Leigh - just wondering how you're feeling? Checking on you. It's been nice to kinda have a little detox break these last few days. I have until Sat and my commitments will be complete and I'll take it down a little bit again. Thing is, my existing patch isn't lasting the full 72 hours. I had to change during the middle of the night last night. I couldn't take the cramps and twitches anymore and I was so exhausted!!!

    Anyway, how are things going with you? How are you controlling the pain? I really hope you're hanging in there!

    Melissa

  • Actiquser
    Actiquser leigh65923

    Posted

    Hi how is everyone here? Its been a few months and how is everyone doing?

    I'm now 2 months Fentanyl free and not missing it. I saw my Oncologist who was disgusted at my treatment saying I will always have pain, it will not go. My Gp who instigated the withdrawal of Fentanyl seems to think because I am in remission, the pain from radiotherapy damage will go !!!

    Being Fentanyl free is great. I have the option of oral morphine now. Do I want it do I take it?  NO. I could go back to fentanyl too but do not want to. NO

    This has been a big learning curve. I would rather cope/deal with the pain in other ways. I do not wish to be opiatised for the rest of my days. Neither do i wish to swap one opiate for another.

    Coming off fentanyl was easier than I anticipated and would recommend a quick taper to those that can cope with that. I know we are all different and have to go at our own speed. I am just saddened that not enough support is given to those who are coming off Fentanyl. I beleive in patient treatment should be offered as an option to ensure hydration and avoid incontinence from the effects on the gut and aleviate RLS and anxiety. Psychological support is essential. The fear of the unknown, the withdrawals is a very big fear, having gone through it, it's tough, but do able. Support from others is essential.

    Please let us know how you are all doing so we can share the experience and support one another if the various health care systems are unwilling to do so.

    I know I found all your support essential and it's what kept me going at such a pace. My ethos was just" get it over and done with", but we are all different.

    • melissa7471
      melissa7471 Actiquser

      Posted

      It's good to hear from you and that you're truly off the Ft for good! I'm at probably 40 but just recently started detoxing again. Had to stop while closing my vacation home. But my dr was surprised I had gotten from 100 to 50 all by myself. I have to admit though, being on Clonidine now seems to help a bit. I had a bad night but it's because the patches don't hold the entire 72 hours. Anyway, I'm still going and MY plan is to be off no later than JAN 1st. Great hearing from you - I'm so happy that you've beat this thing for good!

      Melissa

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