1. Community
  2. Brain and nerves
  3. Fentanyl

No more patches

Posted , 4 users are following.

Jdo79
Jdo79

Been on fentanyl for 2 years from 25mg to 100mg got it for cancer pain if I was told how addictive it was I would have never taken it has turned out for me to be worse than the cancer I had if you are reading this and just been put on it think very hard before you put it on it has taken me 6 months to come off and now I am 6weeks off it and it's been hard the best way I did was wean off by coming down 12mg at a time no sickness no diarrhoea a lot of tears and restless legs and anxiety  if like me you are in pain ask for a less addictive method once you put a patch on it controls you  then you start thinking about nothing else except your patch I don't know what is still to come and what I will do about pain relief but I will be in control and take when required not 24 /7 out of it 

2 likes, 11 replies

11 Replies

  • Rener
    Rener Jdo79

    Posted

    Thanks dolor sharing. I'm sorry you are having such a hard time with pain. The I never found relief with fentanyl in patch form b

    • Rener
      Rener

      Posted

      Counting pills or patches is no way to live. Good luck
    • Jdo79
      Jdo79 Rener

      Posted

      Thanks I am just glad to see the back of the fentanyl and the control it had on my life 
  • 111nos
    111nos Jdo79

    Posted

    I have been on it for 7+ years now. I know to well how once your on it you need to stay on it. At least you were able to wean down off of it, some people are taken off way to quickly and it is pure misery for them. I was able to go from 100mcg to 50mcg without to many problems, but I will be on it for the rest of my life and I personally like the patch better that taking pills. Good Luck..
    • Jdo79
      Jdo79 111nos

      Posted

      Well  I am glad it works for you and yes it must be a nightmare to be taken off so quick  but over the 2 years I was on I got used to it and had to keep going up on my dose until I didn't know who I was and started to live a life around a patch 1 and a half days of feeling fine 1and a half of anxiety and brain fog yawning and feeling sorry for my self so as you like your patch and good on you it was not for me  good luck for your future 

  • melissa7471
    melissa7471 Jdo79

    Posted

    Jdo,

    Congrats on being off for 6 weeks!  That's an accomplishment in itself.  My detox journey started a year ago this past July, and I've been completely Fent free since Nov 20, 2016, so next month will be one full year.  I have been left with severe restless leg syndrome which is very painful for me because I have chronic joint issues.  My hips and legs hurt all.the.time.  My RLS is very persistent and severe that I've been able to differentiate into two categories: regular RLS which is bad enough, and violent.  I have a bed rail because it throws me out of bed and I've gotten a black eye from hitting my bedside table on the way down, back pain and more hip pain from falling out of bed.  I am on medication, but it doesn't usually work.  I was on Ropinirole XL 4mg for several months which did nothing.  Now I'm on Mirapex and Neurontin, which gives me at least some limited sleep a couple of nights a week. 

    I believe that this medication should be used for end of life illnesses, period.  I reiterate what you said in your post that people need to think twice about using the patch.  Coming off of Fentanyl was the worse experience of my life and has left me with a horrible, chronic condition.  Again, congratulations for being off.  I hope that you are doing well now that you're rid of the demon. 

    Melissa  

    • Jdo79
      Jdo79 melissa7471

      Posted

      Thanks Melissa I really think you are right about the patch given to the terminally ill because coming off was worse than the illness and I to suffer from RLS and I am only sleeping a couple of hours at a time but found if I sit at the edge of my bed until my legs start to get sore and cramps then lie down I really helps or try standing until you can't once you lie down you really appreciate it it helps me good luck and well done on your freedom 

    • melissa7471
      melissa7471 Jdo79

      Posted

      Thank you.  And thank you for the leg advise.  I'm willing to try anything at this point.

  • Andria87
    Andria87 Jdo79

    Posted

    That sounds awful but you should be proud of your accomplishment! 

    I’m still really apprehensive, been on Fentanyl about 5 months on 25mcg currently, went straight up from 12mcg.

    I’m only 30 and after being on a medley of painkillers, they finally gave up trying other meds after my long awaited Fibromyalgia diagnosis.

    I’ve always been worried about being on Fentanyl patches & recently have been having bad side effects like sweating, nausea and palpitations. 

  • Rener
    Rener Jdo79

    Posted

    I can't get relief with the patch form. I would rather have a patch form of med than worry about pills. No fentanyl though. I had that in a pain pump that I had removed due to infection and I started getting very worried after a very small amount. I felt like if I stay on fentanyl I am not going to live another 5 years. Glad your sharing your experience with fentanyl. If it gets through to just 1 person the danger of this med than you might just save a life. I'm trying to let People know the dangers of gabapentin aka Neurotin. The side effects speak for Themselves.  If anyone is taking this med and have started getting sick than look at the side effects. All Doctors say it's safe and great alternative to opiates. It's not safe. Most  dangerous drug I've ever taken! 

  • karenlh23
    karenlh23 Jdo79

    Posted

    I have to agree with many of you here,

    I would never go on Fentanyl unless terminal.  I have severe JRA (Juvenile Rheumatoid Arthritis) and was on Fentanyl for over 15 years, 50-200mcg patches. 

    It was making me sweat uncontrollably, angry all the time.  I was having to change 48 hrs or I’d have withdrawal symptoms.   It controlled my life, going to pharmacy for refill, treated like an addict. I never ever felt high from this drug, just pain relief. 

    I knew I had to get off Fentanyl, I was miserable on it. 

    February 25th 2016, was my last day (tapered by Pain mgmt dr) and it was pure hell for 6 months.

    The best advice I received on this website was that it takes 2 years for your body to recover from this drug.  I had Horrible anxiety, restless legs, body pulling, yawning, rapid heart rate, etc.  it was horrible. 

    At a year I definitely felt better. It was a brutal withdrawal. Zero want for the drug, just the detox side effects, hardest thing I’ve ever gone through in my life. 

    To anyone going through this, hang in there, it’s worth it - I have my life back. 

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.