Fentanyl withdrawal and Insomnia?

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I was taken off Fentanyl from April to June of this year after being on it for pain since 1998.  Since then I have not been able to sleep in fact I only sleep 1 hour a night. I'm also chronically ill and bedridden now while several months before was taken off a few other medications to try to figure out if any were causing the symptoms. 

I've tried everything to try to sleep but I have Akathisia now and after laying for 30 minutes I'm wide awake and need to move and make sounds. I can only lay down a few hours during the day but don't sleep. I was put on anti seizure medication because I started to seize. Sleeping pills only drop my oxygen and make me depressed. I also have constant shocking pains everywhere in my body now. They started in my feet and heart area but now are everywhere driving me crazy. 

Has this happened to anyone else? Does it ever get better? I'm afraid I will die from no sleep. 

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  • Posted

    I walked off fentanyl going down to nothing this fall. My doctor put back on a low dose as my quality of life sucked. I know it's not an optimal solution, but none of us put ourselves on this drug and we shouldn't be punished with the crap life withdrawals leave behind. Would you consider going back on the medication? Would your doctor put you back on? This site is full of the untold stories that the media won't address; it's sad what's happening to people who have done nothing wrong. Nobody should have to go what you're going through. You're in my prayers, you need an advocate.

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  • Posted

    Hi, I too came off Fentanyl and also the sublingual Fentanyl at a very high dose this August. I spend a lot of my life in bed too. I don't sleep for more than 1.5 hours at a time at night, waken and get up then go back to bed. Other than the pain, I'm no different now. I can honestly say the fentanyl despite the massive doses wasn't doing much for the pain, I'm only marginally worse now and it definatly limits my walking and balance and my hair is falling out big time. I did suffer from hyperalagesia and it has now settled.

    No one has ever died from lack of  sleep, I would not go back on to Fentanyl. Yes it's addictive, it's what your body craves after being use to it for so long, the hyperalagesia does settle down. I have started taking a herbal sleeping tablet and it seems to help settle me at night. If I can't sleep I read, watch TV, do things. This drug should never be used for long term use and should only be used at end of life as it is so addictive. Amytriptilline helps with sleep and nerve pain.

    I am not being unsympathetic, this is only my individual view and choice. Everyone is different. I am choosing to do a 12 week supported pain management course with a psychologist and physiotherapist. I am done with toxic drugs. All drugs have side effects. I want a life.

    If you have unbearable insomnia causing you to stress and have akathisia from the withdrawals and ongoing hyperalagesia then it's worth discussing this with your doctor with a view to going back on Fentanyl. Only you know the quality of your life and what you want for your self. It's sheer madness to have someone on Fentanyl and a load of other toxic drugs for 18 years and then to stop them all together with no support. It's like Doctors treat patients as little experiments when they say "we'll stop all your drugs". Of course your body will kick back and you will feel like death. What is your chronic health condition as with more detail others may be able to help and offer advice ? What country are you in ?

    Something else to consider is that other long term users of fentanyl on other sites have said often it takes up to a year for PAWS Post accute withdrawal symptoms to disappear. These include insomnia, mood swings, lethargy and are said to be the brain recovering. It sounds very much like this is where you are. It sounds like you need a lot more support than you are getting. If your doctor cannot give you psychologocal support it is worth looking to a drug charity to help. That's who helped me, not my Doctor. It's also worth looking at PAWS on the internet and I think you might recognise where you are in your recovery from a very addictive drug. I should emphesis that you have not received the help you should have got when stopping Fentanyl as it messes with our brains BIG TIME.

    I hope you get many other people who respond to help you. Remember we are all here to support you, we may have differing opinions but we have choices and we all have the right to good health care but unfortunatly we do not always get it. Just remember you are not alone, we have all been in dark places.

    Wishing you well and most af all a good nights sleep.

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  • Posted

    hi there and thanks for posting. i had been on fentyal 75 every 48 hours for 15  years. i have been off for close to 4 months now. i was kinda forced to go cold turkey and it was/is rough...! i am still sleeping only 2 hours a day and am still having visual hallucinations (the audio ones have finally stopped) my gi still sucks and i am dealing with bad mental issues . but let me tell you this, i am 1000000x better that a month ago , and the same amount better than 2 months ago... it does get better. it reall does but it takes time. fentyal is depod into the fat cells and it can take time to get out. not to mention that your brain and body have to reset. idk if you are getting mental help but it really is helpfull! i recomend it. no sleeping aids seem to help me but each day it does get a lil bit better it is just tough to see when it is in your face. looking back you can see progress, just hang in there and keep venting/posting here. we do care and some of us have gone thru the withdrawls or are going thru them so  while everyones case is diff we share a lot of same stuff.  i do care and only wish the best for you! please let me know if you need to chat.

    hb.

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    • Posted

      I'm so glad yours is getting better. I've been off since June and getting worse but was taken off Lexapro and Klonopin too after almost 30 years. My mood is good but physical symptoms awful. 

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    • Posted

      just take it 1 step /min at a time man... i forced myself to give up norco es and morphine years ago, ( yes i was on all 3 at same time) so in end it was just fentyal gabapentin and my shrink med effexor. now im off the feny  but way up on the gabi and doubled my effexor meds. the y have seemed to work okish. but i am fully refushing any new opiods or relaxents (sp) now that i seen the light at the end i want my full life back. the pain i suffer is the same and now im loseing control of lower left leg (nerve damage) im better off. i have a operation on the 19th (this sat) to deal with some nerve crap so im hopefull. i am sooo happy your mood is good!!! keep a good eye on that sh@# as it is like a cancer you never see. in reguards the physical crap, it can take 12 months to get thru. fenty  clogs the reciptors and causes some bad stuff in the body. it is not ment for long term use. it poisions us. so it will take time to reset it . both mind and body. we as humans are a lot tougher than we think/belive! you can and will get thru this! just 1 min at a time. and tyvm for the reply. i am here for you.

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  • Posted

    I too had trouble sleeping after 15 years on Fentanyl.  An hour or two at a time.  Now off since July and I sleep about four hours at a time.  Have bladder problems that wake me two to three times per night but I think the effects of fentanyl is all gone by now.  I did come off very slow though over six months.  Was at 75 mcg hen started to come off.  Best of luck.  Keep your doctor informed!  They are under pressure to stop writing it but some people will need more help.  May God be with you!
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