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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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  • leigh65923
    leigh65923

    Posted

    Hey, all, I have the most discouraging news I can imagine. I saw my pain specialist today and he told me he wanted me off my patch AND my vicodin in one month's time.  I absolutely know that is impossible, the fentanyl anyway, fairly confident I can kick the vicodin, no problem, have never had much of an issue going without it if I had to....but the fentanyl....it took me about  6 months to go from a patch every 48 hrs to every 72 hrs and it still can be uncomfortable those last 12 hours, but I have been succeeding.  I think, perhaps, the doctor is just firing me as a patient and making it look like it is my fault.  I really don't know what to do...it is strange...he gave me one last script for half of the normal amount of vicodin for one month, yet a script for enough fentanyl to change the patch every 48 hrs for one month.  I brought in 5 boxes of 5 patches also, and he let me keep them, I guess because I paid for them they cannot confiscate them??  I simply DO NOT know what to do at this point.  I just do not think it is possible to come down from 100 mcg fentanyl every 72 hrs to none in one month's time.  Sounds lethal, and sort of like malpractice.  Any suggestions?  Should I just try to find a new pain management doctor?  I have been completely compliant with this guy for 3 years, it upsets me to lose this history and start all over with someone who is going to question every thing I do, and assume I am a drug seeker right from the beginning.  Don't misunderstand, as I have said in the past, I WANT to get off the fentanyl, I really, really do, but he is asking the impossible, I think, even if I did try to get admitted and put in a coma to withdraw, I still think I would need to be at a lower dose to try that.....please help me??  I am scared and very, very upset at this point.
    • jocelyne44618
      jocelyne44618 leigh65923

      Posted

      Hi Leigh,Oh love  I really feel for you, love sorry I started to sound off on you, on my other mail to you.  Love please find a new doctor, you cant, mess you drugs around with out help, please Leigh, I wish You could jump on a plane and come to the UK ,(thats no joke -I have a small 2 bed bungalow- I mean it ), if you have been on 72  you CANT  jump down to take a lower amount in one fell swoop.  Did your doctor give his reasons for wanting to do that. Silly question what is vicoden. whats it for?? Leigh, Are you living with family, have you talked to your family, about this issue? Love we all need and want to get off these patches,but there must be some one who can advise you better than any off us, Look at us as your family, BUT we are not medical doctors or pain clinic aides.  Sorry I dont understand the "coma bit" I know I could go into a clinic here in the UK but I have never heard about the Coma bitfrown Will we all come out looking like my little devil (lo)biggrin

      When you change your patch you mentioned the last 12 hours is bad.  What I do is I make sure that I take off the sticky patch area in the shower. After the shower I allow my body to cool down before I put the next patch on But I do make sure its the same time of night/day,  I do some times suffer  when the patch is running out the plastic part goes "crispy" But every 72 hours at 9 I take the patch off and shower. I also take my amitriptyline every day at the same time. I have found that I do feel better for it.cheesygrin. Do stay in touch  Jocelyne   Cambridge UK

    • leigh65923
      leigh65923 jocelyne44618

      Posted

      Thank you thank you thank you Jocelyne!  Such a very sweet and empathetic post, you made me cry!  The questions you asked...vicodin is just a US trade name for hydrocodone and tylenol...there are many names for it...good news there, I have been over 24 hrs without taking one and have had not ONE problem, actually, I feel a little better!! So that will be no problem, I hope!  I would love to be off ALL pain meds and see how life is without them! (and just hope it is not a nightmare of pain),  The coma bit is when you go in to the hospital to withdraw from an opioid drug....they put you into a heavy sedation ("coma") then pump your body full of stuff that makes the opioid no longer work, the idea is that when they wake you up you will be done with the withdrawal, but I just cannot imagine it working for the dose of fentanyl I am on right now, I think my heart might stop to tell you the truth. And I do not trust going in to a "drug treatment clinic" to do such a thing, I would want to be in a REAL hospital with REAL doctors.  Jocelyn, no, I do not have any family members near me, only have one sister who lives very far away, and my son is in prison right now, due to get out this Dec.  He asked me to put off doing the fentanyl detox until he got home, but the doctors have other ideas, I guess.  I do have a church full of very sweet and supportive friends who will be with me and pray for me anytime I need them, though,  I know the reason that the pain doc I have been seeing is doing this is because they are getting all kinds of pressure from the federal government to put all pain med patients down to some ridiculously low dosage and not go above it. The feds are actually trying to make it so someone having surgery can be on pain meds for no more than 36 hrs after surgery!!  The fentanyl patch at 100 mcg every 72 hrs is like 300 times more than what the federal government is pushing for right now (that is probably a bit of an exageration, but it is A LOT more,) So, to keep their asses out of trouble they dumped me like a bag of trash When I came to that clinic I was on the exact same dose of drugs that I am on now, I never, ever asked for an increase, but now they claim my dose is way too high, go figure. After I posted yesterday I did find a pain clinic that is in a hospital that I respect, I am hoping they will take me as a patient if I go there with the goal of getting off of fentanyl.  I will have to get a referral from my primary care doc, but that is all red tape you go thru here in the US. I think if I can stay off the vicodin it will impress everyone enough that I am not a "drug seeker" and they will take me on as a patient.  I also intend to write a very expressive letter to the pain clinic doc that just dumped me and tell them the truth of what they have done.  I would justcool LOVE to come visit you sometime sweet Jocelyn, you are quite the inspiration to us here on this site.  Thank you again, and again, I feel soooo much better now than when I wrote the post.  By the way, I do NOT remember you ever starting to sound off on me (???) 

      Take good care of yourself!

    • john29217
      john29217 jocelyne44618

      Posted

      Jocelyne,

      My guess re. why Leigh's Doctor here in the states is making such an unreasonable request of her, is because the heavy hand of the federal government has come down on the medical profession and TOLD them to cut back on opioid prescriptions OR ELSE! So the medical profession has freaked out and ran behind the bushes for cover and left the patients out there to weather the storm alone.

  • dan6281
    dan6281 leigh65923

    Posted

    I was on 2-100mgc patches every 48 hours. I used the patches after an operation in which MSRA Was introduced into my blood stream. I used the patches for 13 years and was told that this is a drug you don't get off of you are a user for life. Let me tell you that is not true. I just removed my last patch about 4 days ago. I first dropped from 200 to 75 in one day, not fun. Then I dropped it completely about 15 days later, reducing the dose by cutting my last 100 patch. It's hard and painful but you can stop.
    • leigh65923
      leigh65923 dan6281

      Posted

      Oh Dan!!! That is one amazing story!!  How did you get thru the physical withdrawal??  I am more than impressed, I am in shock, that is incredible!  You, indeed, are one tough dude.  Would love to hear what helped you with the physical withdrawal.  You are a hero!  It is nice to know that it can be done.  Thanks for your post!
  • deb73201
    deb73201 leigh65923

    Posted

    Hi I have been on Fentanyl for about 5 years and I have on been changing it every 36 hours . Now I am so tired of  sweating due to them I think it might be that ? But we will see . I am going to try to move it back to 72 hours .

    and cut back on my pills dilaudid. I am trying to see if I can do it as I now have been told if your driving and get stoped and they think your on meds they can give me a dui

    • leigh65923
      leigh65923 deb73201

      Posted

      Deb, I am so very sorry, it looks like I have never replied to you personally.  Please forgive me, I am easily confusedwink.  I surely did not mean to ignore you.  I promise to write soon.  This site is so hard for my browser for some reason. The text goes from tiny to huge and when I type it does not keep up with me, it is very frustrating.  I am gonna see if I can't send you a personal message (just click on the envelope)  and give you my email, so we can talk easier.  OK?
  • deb73201
    deb73201 leigh65923

    Posted

    Me again sorry . I was hoping you can let me know how your doing coming off of yours still pain in your legs?
  • john29217
    john29217 leigh65923

    Posted

    Leigh,

    I read your story and I feel so badly for you. We were put on this medication by doctors because it works and because it helps us get back to our lives. I don't blame the doctors, I'm sure they were doing what they thought was right. What does p*ss me off, is the societal wave of disapproval that is fed into by an idiotic media that portrays anybody who takes pain meds (specifically opioids) as addicts who are capable of terrible things.

    What you're going through is inhumane and unfair. I am currently transitioning from 50mg every 48 hours to around 10mg every 48 (I am cutting patches). I've been through a lot of painful things; nothing comes near to the agony of depleting this drug from your system. Leigh, going from 100mg every 48 to every 72hr is way too big of a bite for you to attempt on your own. If your doctor is suggesting you do this, you need a new doctor. Don't punish yourself like this, there are better ways to do this.

    Stay in touch.

    • jocelyne44618
      jocelyne44618 john29217

      Posted

      Hi John  Jocelyne here   yes I said to Leigh that she should look for a new doctor.  Im note sure if you have the same way  when you leave your doctor surgery, we have to arrange for our notes medical  info is sent to our new doctors,  Leigh  needs guidance for her move . speak soon  every one  just looked at the time its 12.45  I must go to bed.  Wish you all well.  Jocelyne from Cambridge  UK
    • leigh65923
      leigh65923 john29217

      Posted

      Hey John, thanks for the support, sorry to everyone who reads this, I have been off the site lately and battling getting off the high dose of hydromorphone (vicoden).  Doing great, I think, down to 1 10 mg pill every three days, I was taking at least 4 a day.  Haven't really suffered TOO awfully much, the fentanyl is definitely much worse (for me anyway, because the fentanyl is a physical addiction and I think the pills were more of a mental addiction for me).  I have a 3 month supply of patches right now, so I am going to try to get referred to a different pain clinic and see what they can do.  I have FINALLY succeeded in being comfortable with going from 100 mg patch every 48 hrs to every 72 hours, but it took months, and every once in awhile the withdrawal symptoms still come on and I have to put the patch on a little early like 8-10 hrs before the 72 is up, so I kinda have to reset the "clock" from that, or I would be at 60 hrs, not 72 hrs  (lol).  I know for a fact the reason the pain clinic "fired me" as a patient was because the federal government here is trying for some ridiculously low..what they call "morphine equivalent dose" and mine was the highest of the whole clinic, so it looked good for them to get rid of me.  No thought as to the fact I came to that clinic 4 years ago at exactly the dose I was on when I left, I never was caught with other drugs in my system and I never asked for an increase of dosage.  In my mind, I was a model  patient.  Hah!  Goes to show what I know.  Because I have severe nerve pain from my MS, I am a terrible patient!  Ah, don't mind me, I am venting a little.  I am hoping a new pain clinic will take me, it is a scary thought that they might not, and I would end up in the hospital with fentanyl withdrawal.  Yikes!  And I have heard from the grapevine that this federal program is going to try to make it only "acceptable" for a patient having surgery to have 3 days of opiod use post-surgery and then go to an NSAID.  Good luck with that, is all I can say!!  All the best to those of you out there fighting the good fight, trying to get off this terrible drug and keeping your dignity in the meantime. I will try to write you all individually who have texted me in the very near future.   Take it easy, Leigh 
    • leigh65923
      leigh65923 jocelyne44618

      Posted

      Hey sweet girl, i just found this reply in the clutter I have going on here and I am so touched.  You are the most caring person on this place. I am so overwhelmed by the support I have been given, and I am pretty much a newcomer.  God Bless you honey and thank you so very much!
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