My hell journey on Fentanyl is over!

Posted , 13 users are following.

Just wanted to share my experience with Fentanyl and give hope. I was prescribed a 15mg, every 72 hour patch for Lupus pain, which steadily was increased to 150 mg, every 48 hours in 5 months. The pain was never really in control, but my Dr was afraid of Percocet, so gave me Fentanyl, without knowing anything about it. Very gradually, I became deathly illl. I lost 50 pounds, had very low bp, began fainting, became paranoid, was unable to work or drive and nearly ended my incredible 36 year marriage. Saw 6 different specialists. All blamed Lupus, none blamed the Fentanyl. My husband did research and found Fentanyl could be the cause. He took me to a pain clinic to get help detoxing, since the prescribing Dr didn't know how! The pain clinic treated me like a street addict and tried to cut my dosage WAY too fast, without help from other medications. I became so despondent, that I tried to quit cold turkey (from 125 mg!) and almost died on the way to the ER. They replaced the patch and sent me back to the prescribing Dr., I then tried another pain clinic. WHAT a difference! They devised a 4 month step down plan, giving me Percocet 10/325, 4 per day, the rationale being that it is much safer and easier to get off the Percocet, eventually. I had only mild discomfort for a couple of days each time I would step down off the patch. In 4 months, I was Fentanyl free and NEVER had a desire for it. It's now a year later. I do still take the Percocet and my pain is in control. My bp, weight are healthy. No more fainting. No more paranoia. Great marriage again. Seeking employment. Keep seeking help. Tell someone you trust that you need help. I am still quite upset with the Dr who first put me on it, who assured me of its safety. Fentanyl should be reserved for end of life hospice care!

5 likes, 21 replies

Report / Delete

21 Replies

Next
  • Posted

    Wow, what a nightmare! Poor thing! I just started fentanyl 25 7 days ago. My doc had me on 5 mg 4x a day for breakthrough pain. I asked him if I could up my Percosept instead of the fentanyl patch and he said no. Granted I am only supposed to have these medications until my back surgery, but after reading your post I think I'll stick with my guns on this one. Thanks for taking the time to tell us your story!!!! ????

    Report / Delete Reply
  • Posted

    Dear Leigh. First of all well done you for beating this dreadful drug its reached.i too am on fentanyl,I'm also about to see the pain clinic and hope after along wait I don't get treated like your first visit. We arnt street addicts and shouldn't be categorised like that. I'm pleased you eventually got the help you deserved,I too hold my doctor to blame for not recognising that the fentanyl was doing me no good, he just kept increasing the dose without questioning me as to how it was effecting me. I'll remember the drug you were put on. They have wanted to put me on methadone which is the last thing I want. I'm told this is also very very addictive and would need it for a long time. So pleased to here from someone who has finally kicked this killer drug ,hoping I can report the same in the future. Well done to you again enjoy your life the best you can. David. 

    Report / Delete Reply
    • Posted

      Dear David, I'm really proud of you for taking this step. Stand firm and remember that no one cares as much about you as YOU do! And no one knows you like you do! You know what Fentanyl is doing to you and you know you need help getting off of it. Do remember that Percocet is also highly addictive, but MUCH easier to with draw from. I go off of it from time to time when I feel I am getting tolerant. I taper down for a week, then stop and am through withdrawal in 36-72 hours, unlike sudden Fentanyl withdrawal that stopped my respiration! Godspeed, David! Keep me posted.

      Report / Delete Reply
  • Posted

    Im sorry to hear you had this experience with Fentanyl. I have been on it for 6 years now and have had nothing but good experiences with it. At one time I was taking 120 percoce a month along with the patch. I was slowly weened off of the percocets and no longer need to take any pain pills. A 50mcg patch every 3 days and I am just fine. I do not miss having to take all those pills every day. I guess the medication is good for some and bad for others.
    Report / Delete Reply
    • Posted

      Very true, we are all different. But I was on way too much. I was on 150 mcg (not mg as I said) every 48 hours! And I am a really small woman. I just grew tolerant to it so fast that I needed more and more to keep withdrawal symptoms away, til I was in constant withdrawal. I was being poisoned to death. So glad it is OK for you.
      Report / Delete Reply
  • Posted

    Awesome Leigh69697!  Sorry you had such a bad reaction to the drug.  It is very powerful and seems to suck life right out of our bodies.  I am happy you are successfully off and me too!  Best wishes to living again.

     

    Report / Delete Reply
  • Posted

    I wanted to mention to everyone wanting to quit Fentanyl patches: when you use the patch, you stop really tasting and smelling and you are never supposed to get overheated or you can OD from too much medication being released too fast. My greatest joy being off the patch is taking HOT baths, going to a gym and REALLY sweating, hiking in the sun, swimming as long as I want without worrying that my patch will slip off. Eating BBQ! Yeah, I still have a lot of arthritis pain caused by Lupus, and I do spend time in bed after over doing, but I'm NOT physically sick or mentally ill any longer! Fentanyl took so many simple pleasures away! When you are experiencing withdrawal, remember all the things you will gain very soon.

    Report / Delete Reply
  • Posted

    I'm so glad your journey of this medication has come. I never had any issues with fentanyl until I found out I was pregnant and have been slowly reducing my dosage. This is truly hell in all aspects of the definition. I'm almost 9 weeks (Wednesday) and these past 3 weeks have been hell. I still have a month to go. I've been taping pieces of the patch off to reduce the mcg being absorbed. The pain Dr I saw here in Dallas told me that fentanyl is safe during pregnancy. I laughed as I know better. I haven't had much luck in finding a place that will truly help me, but I am not giving up just yet. I'm actually considering going in patient at this point even though I have no idea what to do with my son. I fully believe Fentanyl should only be used for those terminal or with specific needs because of how dangerous this drug is. My case was special as I did have to go to a fertility specialist to confirm I could not get pregnant without medical intervention in order to be placed on this medication ( somehow still managed to get pregnant- God's will). This road has been awful, but seeing others successfully stop this drug is hopeful. I'm sorry you were treated the way you were, I was too when I first tried getting help to get off this Med, I still believe that some of my dad fell this way towards me however I try to not let that get to me anymore. I broke my back in 2010 while active duty and the military refused to allow me to have surgery. Finally I ended up having emergency surgery in October of 15. To bad the damage had been done with no hope of reversal. I'll more than likely have to go back into surgery after this pregnancy to fix the damage from the pregnancy, and also get more rods and screws (if I'm lucky-i was told to expect that and a plate) hoping it doesn't come to all that, but I will be happy if I can get off this crap and still have a healthy baby. Thank you for the inspiration. God bless.

    Report / Delete Reply
    • Posted

      Hang in there it gets easier. I used my last patch going on 17 days ago, I still have panic attacks but they don't normally last real long aND my legs have finally calmed down . My issue is the pain, it seems like it's 10 times worse then before I started the patch, when does the body finally start fighting off the pain naturally again.

      Report / Delete Reply
  • Posted

    Hello Leigh, what a horrible journey you've been on and all because the doctor hadn't bothered to find out about this awful drug.  I'm so glad you eventually got through it and kept your marriage intact.  The first few days of withdrawal for me were terrible, I've never felt so I'll in my life and no sleep for days on end.  Fortunately after a couple of weeks I began to feel better and am ok now.  The doctor who first gave me the patch said it was a strong painkiller and I thought that was ok, something akin to paracetamol, and not one doctor or nurse told me that it was a drug 50 times stronger than heroin!  I found that out for myself through Internet.  I've given a printout of the description of the drug and how lethal it is to my GP as I'm sure she had no idea what it was.  As you say, it should only be given to people at the end of a terminal illness, when it would be a relief for them, not to normal patients who then have to suffer the awful withdrawal symptoms!  Good luck in the future and check up on everything offered to you by a doctor.  Regards, Kathleen

    Report / Delete Reply
  • Posted

    I'm really glad I registered tonight and read this thread. I am only 2 weeks into using 0.50 Duragesic patch... But I just KNEW it wasn't right for me. Prior to reading this thread, I probably wouldn't have voiced these concerns on a public forum... It feels like I'm being poisoned. I'm sluggish, there's a haze over everything I look at, I'm depressed and I haven't had more than 1 - 2 hours sleep since I started the Fentanyl.

    I have a few different conditions... as a result I have been through umpteen new medications over the years and only ONCE did I have a bad reaction to one of them and I knew immediately. Hearing your experience has given me the confidence... Sorry...EXTRA confidence for when I speak to my GP."Requesting" a change of meds. Thanks!

    Report / Delete Reply
    • Posted

      Hi Chopper, oh my goodness if you have any doubts you must get your GP to help you get off the fentanyl as soon as you can.  I have a feeling that the normal GP's are not given enough information about this awful drug and are just dishing it out as a strong painkiller.  If you can find articles on the death of Prince the US entertainer, you'll find that he was addicted to fentanyl and it could have been the drug which finally killed him, although I guess he was taking other things as well, who knows!  I went through a few days of he'll getting off a low dose of Fentanyl and the sleepless nights and diarrhea were the worst. Kind regards and good luck, Kathleen

      Report / Delete Reply
    • Posted

      If you know this medication isn't right for you, give it back to the pharmacist and have your provider give you something new. It truly is a horrible drug. If you haven't been on it with the exception of a patch or two, you shouldn't have withdrawals, but every body is different. It wasn't until 2 months or so of this medicine I realized I had become physically addicted. Now I've been on it for a year and trying to stop, I actually went into preterm labor because of the withdrawals and trying to get off this Med. I wish you the best of luck.

      Report / Delete Reply
    • Posted

      Hi  Brandelyn,  oh dear it can't be good having withdrawal when pregnant.  What was your doctor thinking of?  I do hope you can soon get off it and make sure you never get involved with it again.  I've told everyone I know about fentanyl in the hope I can save someone else the misery I went through.  Can you imagine what kind of a trauma a tiny baby can get through with it's mother being addicted or trying to get off fentanyl.  Kind regards and good luck, Kathleen

      Report / Delete Reply
    • Posted

      It's been rough, but baby is doing just fine and has had a strong heartbeat through. I'm not cutting my dose anymore but I did get to half my original dose. I'm not sure what the drs have planned as of now but hopefully I'll find out on the 12th. I'm going to my pcm to have him refill my meds until I can get seen by pain mgmt and My Specialist.

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up