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Fentanyl withdrawal is inhumane

I am currently on day 22 of a fentalyl detox ... after the forst 3 days of punching my self in the face and wanting to end life a drup called lofexidine took away a percentage of the pain. It takes 16 weeks to get righ again if your renal system has not been damaged by the dependence. I had a year of chemo, radio and surgery in 2011 causing this to be prescribed  and this withdrawal experience has bee worse than that entire year. Fentanyl should only be used in palative care or to end of life use, If you can stand the paranoia , innumeracy, and alarming spending habits it creates. Actually I never found it to be a great painkiller but its hard to admit during the intial euphoria it creates. which you quickly get used to. DONT TAKE FENTANYL it is so pure and strong it will destroy your natural happy systems forever. The NHS knoe how to prescribe it but no idea how to get you off it, Forget the fliue like withdrawal systems its brutal and dangerous and flue very pleasant by comparison.  I hope taking the time to do this stops just one person taking.

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  • RafaUK harvey81891

    I agree with you.  They just say cut it down by xx microgram per month, but offer no support or advice.  I statred to cut down and went into a complete slump and was taking other analgesics, co-codamol and fentanyl like smarties.  After a while I just stopped it and stayed where I was (75 microg patch.) I am looking at Cannaniboids. (CBD)  It is available but expensive unfortunately.  NHS does have Sativex a 50:50 mixture of CBD and THC, but will not prescribe it.  They only will for MS patients.  It is cruel as the judge said.  See this story: http://www.mirror.co.uk/news/uk-news/judge-refuses-jail-cancer-victim-4125347

    I must say when I first started using fentanyl I was very happy with it and it changed my life, but now some years down the line I am in trouble as I must have analgesics for an autoimmune sensory neuropathy. If I cut down I get withdrawal symptoms!!!

    It is strange that they will not even do a trial.  The company that makes Sativex, that it grows the hemp in this country and then exports its products, both THC and CBD to other countries if you do the research.  CBD is harmless and in a number of patients it will help for pain.  I am just not prepared to buy weed of unknown quality illegally.  There is a form now that contains almost 0% THC, the psychoactive part you do not want.  The authorities know this but it suits them to make it into some awful, horrific drug.  They did the same in the USA first with alcohol with the prohibition and more recently with cannabis.  22 States in the USA now have Medical Cannabis programmes.

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    • janet81959 RafaUK

      We also have medical marijuana programs in Canada, I live in Toronto and can go into a store that is for medicinal use only and I must show my medical marijuana card before they will serve me.  I don't go there anymore but when I did, I found the edible products worked the best because the effects lasted for the full day.  I have tried sativex and another product-one was a spray and the other was a pill but for me, neither help with my pain.

      it is a shame that in your country the government and powers that be will not open their minds to the definite beneficial properties from medicinal marijuana products.  Here in Toronto it has been decriminalized but not legalized unless you are on the federal government program but even that program has now been put on hold. Fortunately in our big city the police do not hassle anyone who goes to the medicinal marijuana clinic and they do not hassle the clinic. There are specific rules we must abide by and as long as we do, we remain members in good standing and the police all of us alone. I'm so sorry that your country is not doing more to promote safe medicinal marijuana programs.

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    • Pointer99 janet81959

      Hello Janet and Rafa,

      I live in the UK. It frustrates the HELL out of me that our government is so afraid of losing votes among the "respectable" middle-upper classes, that they wont even discuss the medicinal aspects of cannabis.  Unbelievable. And we are meant to be an intelligent, compassionate first-world nation, like Canada etc. It is simply about the fear of losing votes among the "important" sections of society, much the same way that the US cannot implement gun control laws, because of the loss of votes and financial support from the powerful groups such as the NRA that vote for them and contribute huge finances to them. Its a disgrace, the misery of people suffering long-term chronic pain is not even considered. Ok sorry for my political rant, but now its out of my system!

      I do NOT advocate the use of drugs, especially harder drugs, for recreational purposes. But take heroin for example, the "worst, hardest" street drug of them all.  Got to any hospital in the UK, and they re-name it "Diacetylmorphine", the chemical name for heroin, and it is used to relieve very bad pain such as heart attck, traffic accidents, etc. Why can cannabis not be the same? Still criminal to carry, deal etc for recreation, but legal people in chronic pain, and of course, far, far less harmful and addictive than heroin.

      I have had chronic pain all my life, due to my condition. When I was young (up to about age 25) it was not too bad, but even back then I had many aches and pains. At university, I was very innocent about drugs. I have never smoked (cigarettes i mean). Yet I remember being "stoned through passive smoking" the first time. Yes, inhaling smoke is very bad, yes now smoking is much more limited. But i still remember thinking, "hey, all my aches and pains have gone" it wasn't until it happened again at another party, that i figured out what was going on!! It worked wonders, and i got friend who were regular potheads (nearly everyone was, on campus!) to make me some 'space cakes', and they worked a treat. But after leaving Uni, i lost touch and didn't know anyone with access to cannabis (or knowledge of baking!!). What a shame our government is so messed up!!!

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  • mangooner harvey81891

    There have been many reported success with Suboxone (buprenorphine)

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    • patti2576 mangooner

      I do not like the side effects of the Suboxone, just like drug withdrawal symptoms; nausea, vomiting headache, sweating, insomnia, blurred vision, etc.  That is what I am trying to avoid!

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  • orb harvey81891

    Yep I'm not happy with Fentanyl either, although I was only on it for about 6 months (75mcg patches.) and decided to give them up. I'd had enough of the daily sweating and fact that they never really did anything at all for my pain. I have degenerative disc disease and a herniated disc, along with a bone tumour in my pelvis for which I've had major surgery but It can't be fully removed.

    Anyhow I count myself lucky with regards to the Fentanyl withdrawls as I didn't get any at all. Mainly as I went stright back over to my max dose dihydracodine which stopped any withdrawls from the Fentanyl. HOWEVER I know for a fact that if I try to stop the dihydracodine I'm in for a rough ride, because when I stopped that initially to go over to Fentanyl, the 3 days of withdrawls were absolutely terrible.

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    • orb Mchelle

      Hi.. I think i just had to reduce the dihydrocodeine down as I was on a lot of it at the time and had to get the levels matched.. Also as I have suffered grand mall seizures in the past my doc has to be careful when swapping medications.

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    • carol77581 Mchelle

      I personally went off fentanyl because it was only working one of the two days and I would start with withdrawal symptoms. I went on fentanyl originally so o would not have the ups and downs of other pain killers. It was recommended to me for s more around the clock chronic pain management. I don't know about others. I was on fentanyl for 16 years. Stopped 11/4 and still dealing with major RLS like Melissa

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    • orb carol77581

      16 years on Fentanyl eek.. Wow that's got to be some sort of record.

      Same for me though Carol with regards the withdrawls... I ended up on 100mcg's of Fentanyl and started getting the withdrawls after about 48 hours... Having to wait another 24hrs before I could have my next patch wasn't great at all. 

      I did think that Fentanyl would be the worst to come off after about 6 months but for me Dihydrocodine withdrawl was far worse :o

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    • carol77581 orb

      I'm still on Vicodin and take 3-4a day. My biggest complaint at this point is the RLS and aching legs. Never sleep much but I can deal with that. The original back pain problems are very minor. There are so many worse off than me so o should be counting my blessings. I do go to work every day and can walk shop go out and do things. It's when I sit still o feel o will jump out of my skin. I just hope this forum can help others get through it like it did me. People on here saved me from suicide when o thought o could not cope but each day is a little better. Hope you can find relief to enjoy life every day.

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    • melissa7471 Mchelle

      Hi Michelle,

      I wanted to jump in here because I was on Fent 12 years and the reason I had to stop was because my doctor decided he was going to stop prescribing any narcotics to any one for any reason, as are a LOT of physicians in FL. He did not help me or give me a plan. I've been on this journey going into my 8th month and I've been completely patch free for 13 wks and 4 days and still having restless leg issues. I rarely sleep, I found a neurologist who put me on Requip in the strongest dose extended release and it's not working. Until 4 wks ago, I had anxiety, I felt like things were crawling all over me and I had severe nerve pain. But, I was able to start seeing a pain management dr and he prescribed Cymbalta which has helped with those symptoms. I only have occasional anxiety (maybe once a week), but the nerve pain and creepy crawl T's are gone. The RLS remains though and it's pretty horrible. Carol can tell you that I also had sores break out all over my body too. If it wasn't for this forum or what I call my support group, I absolutely could not have gone through this. I had ZERO support from my dr. My family has been there but not knowing what to do. I don't know where you are in your own journey or if you're just here for info but this is the place to be. I will always be here for others too. There are too many people to name but Actiq, Leigh who hasn't been around for a while), Carol, Tom, Hope - I couldn't have done it without their advise and encouragement.

      Take care and let us know if you need anything. The journey continues.....

      Peace & Hugs!

      Melissa

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    • orb carol77581

      It's good to hear you're having better days Carol.. Although RLS and leg pain are not good.. Perhaps you could ask for some gabapentin (Neurontin) etc which may help with that?

      I have a similar thing with regards leg pain.. Apart from my spine problems I actually sit on a pelvic bone tumour, this it cuts the blood flow off to my right leg and foot, which is freezing sometimes.

      There are lots like us these days, I used to self harm a lot years ago & still have suicidal thoughts quite a lot.. I lost my Dad too almost 3 years ago now and things just aren't  the same anymore without him. He was my best friend.

      With regards the drugs I'm on 200mg Marol (Tramadol) every day now along with Morphine, anti inflamatories (Celebrex,) Paracetamol, Losec etc etc.. To be honest even that doesn't touch the spinal/hip/leg pain most of the time.

      Take care

       

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    • carol77581 orb

      Sorry to hear about your dad. I lost my mom at ten but it's easier for kids. I know if I lost my sister now it would be crushing. Just remember you have your own personal guardian angel. That's how o think of my mom

      I wonder if the leg pain will ever go away I'm trying to deal with just the Vicodin. I want off all the drugs. As I say this I just went back on anti anxiety and anti depressants. How ironic.

      I'm not even sure why I have the Leg pain. I have a stage 3 ankle sprain and they say another 8 months before it will be healed so I hopeful this is partially the leg pain.

      We just need to all hang together her for support and share our stories so we know we are not alone and that the symptoms are real and shared by others. The healthy don't understand. This place truly saved me and hopefully we can help make your dismal days bright and hopeful. Stay strong. Carol

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    • melissa7471 orb

      Orb,

      Is there any way to surgically remove the tumor off the pelvic bone? Also, it concerns me that you still have suicidal thoughts. I lost my Dad when I was young too. He was everything to me and I still miss him everyday and after he died unexpectedly I didn't think I was going to make it but I have and in fact I feel like I've matured in ways that I may not have if he was still around for me to rely on. It concerns me that maybe you should ask for an antidepressant and if you're already on one then maybe it needs to be changed or made stronger. We are here for you and PLEASE seek help or come here if you start having suicidal ideations. We are doctors, but we are people who care about each other deeply. And I, personally tried to commit suicide 38 years ago and ended up in Critical Care Unit for a week. Believe me, it's not worth it. You've got too much going for you - you're here for a purpose. If you think no one cares you're wrong because I KNOW I can speak for Carol that WE care and we'll be here for you. Hang in there!!! Stay tough. Things WILL get better.

      Peace & Big virtual Hugs!

      Melissa

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    • melissa7471 carol77581

      My leg pain has been off the charts. I even started crying again this afternoon. That's SO unlike me but seems to be happening quite a bit lately. I really hope this upcoming injections will help. I still haven't slept either! I can deal with that but not the constant movement. I've lost track of how many days it's been since I've slept! At least the anxiety is better! Any little thing is encouraging!

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    • orb carol77581

      Hi Carol.. Thank you for your concern.. I am also sorry to hear of your Mum's passing especially at such a young age. The guardian angel is a good thought you have there and I will try and implement it myself. I do believe in God too though and just TRUST that everything will be ok in the end, and hopefully we'll all be together again and happy. Hopefully without pain/anxiety/frustration etc too.

      I hope your leg pain will go away for you.. People just don't realise just how dibilitating pain actaully is.. It's not just the sadness it brings each day, but also the restriction in doing the things that you want to do is very frustrating indeed.

      In my case though due to my circumstances.. I still live with my Mum even though I'm 49, we get on fine and are now here for each other after my Dad's passing, my Mum's taken it really bad too though and at 71, even though she's a young 71 is only just showing signs of improvment.  What I'm getting at here is that there are jobs to be done around the house so I happily do them when I can, however I only get literally 5 minutes to do each one as my back/hip/leg pain kicks off in that time, so I have to stop.. That's the frustrating bit.

      Try not to worry too much about your leg pains as it really does make things worse.. I can tell you first hand that with joint/bone issue etc you can get all sorts of related pains ranging from shooting pains in the whole limb, to longer chronic type pain that actually feels like something all on it's own, but it's not.. It's the injury related pain.

      Thank you again Carol and take care

      John 

       

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    • orb melissa7471

      Hi Melissa..

      I am sorry to hear of your loss also, It seems we are all in a similar boat here.

      I am happy to hear that you are getting through day by day though. Geeez that sounds so simple when I say it like that, please believe me though I really do understand how you feel.. I can't say that about the suicide part though Melissa but I do hope and pray you won;t do anything like that again... We need you here smile

      Thank you again for your concern in this dept Melissa.. Although I have actually been on many different anti-depressants previosuly and on all sorts of doses too.. The problem I have (another one!) is that I can't have some tricyclic drugs like Amitriptyline etc, as they make me have full blown epileptic fits and I've ended up in hospital before due to this.

      To be honest I try to steer clear of anti depressants now as the ones I can have just cloud my already pretty clouded days due to the other drugs.

      Regarding the bone tumour... I have had major surgery for that in which they do try to cut the tumour from the bone, but even 3 specialist surgeons at the Royal Orthopaedic Hospital in Birmingham couldn't remove it all as it's in such an awkward position, being attached to my hip/pelvis but trapped between major blood vessels etc... The remaining tumour was described after surgery by the surgeons as being like a rats nest in an electrical box eek

      Thanks Melissa.. You take care too

      John

       

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    • carol77581 orb

      Yes lean on your angel. You know your mum needs you and having a purpose make getting up each day a little easier. I am sure you have researched as much as you can about your condition but keep looking. Medical prpcedirs change every day and tomorrow may come with an answer

      Also think about water therapy. This might be of some relief. There is also acupuncture. You get to the point you should try anything that is non evasive with potential benefit. Melissa found relief with a hot bath but only while in the bath but it's a small break

      Keep a positive attitude and be greatful you have your mum and not loving alone. We can always find something positive and that is where you need your head while you search for soliution

      Always reach out when you need to vent or share. Thinking of you. Carol

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    • carol77581 melissa7471

      Go back to some of the other remedies. Hot bath with legs out of water. Cool compresses peppermint oil. You said the bath helped so you need to get some periods of relief or you will get batty.

      What about water therapy. This is my newest try for a relief tactic. You also need to stretch as much as possible. The less you do the worse the pain of the tends start shrinking. Geez I'm racking my brain with ideas. Hell try them all at once. Maybe some acupressure. Search online for some of the trigger points

      I wish I could be there to give you some trials of relief. It's so cold here today I think it is making my legs ache more than usual but it's bearable

      Praying you get a break and real soon. Carol

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    • miranda24601 carol77581

      Hi...I am currently tapering off fentanyl patches for the same reason as you stated above. I was on 75mcg every 48 hours but the patches were only lasting about 30-36 hours at best...then the remaining hours were just pure hell. I asked my pain management doctor to take me off of fentanyl so I'm tapering off slowly. But it's worse than I thought it would be....the patches don't last 48 hours...and now my dose is lower...so I only get maybe 24 hours that feel ok then the last 24 I'm in bed...pain is worse...fatigue is terrible...I just wish I could get this over with!!!! It's basically a 60 day tapering down process...I wish I could cut that in half!! But...I Guess when I read your comment above I related to it because you were experiencing the same thing with the fentanyl,...how Long have you been off?? And are you still feeling withdrawal??

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    • carol77581 miranda24601

      I went off oct 4 so it's been five months. The initial withdrawal is supposedly 3 days but then you get all the pain back and if you have been on it for a long time your brain has to learn how to make dolpamine. My worste complaints are still the aching restless legs. If that would go away I would be great. The back pain is tolerable with minimal meds. Cutting down works for some. I was on 50mcg and just went cold turkey. I was also suffering from a major stage 3 sprain so it was probably not the best time

      Just be sure you have backup meds. They can't just take you off with nothing for the pain. It's not easy but now I can say better than being on fentanyl and every other day being crappy

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  • diane61 harvey81891

    I wish I'd read more on fentanyl before I started using it.  My GP said nothing about problems with side effects and the potential of horrendous side effects.  I'd only been on 25mcg a week when I startd with violent muscle spasms and couldn't control my arms and legs.  I stopped using the patch, thinking since I'd only been on it a week it would be easy.  I went through 24hrs of writhing, sweating, crawling skin sensations, flu like symptoms and crying and feeling suicidal before I called the GP, who adviced I go back to 12mcg.  My symptoms improved but I still have less violent muscle spasms despite having  increased my dose of oxcarbazepine to it's maximum and feel so depressed and cry at the slightest thing. And of course my pain is back.

    I so wish I had never started on the fentanyl.

    I plan to give myself 3 clear days when I don't have any responsibilities to try coming off it again and I just hope and pray I've got the strength to do it this time.

    Wish me luck

    Diane X

     

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    • harvey81891 diane61

      Good luck Diane !! 

      Please dont leave it too long before Detoxing as the stuff is so pure it will eat into your systems. You may also need a few more days to deal with some fatigue. There is an old hypertension drug called clonodine which can help numb the withdrawal and prescribed for hot flushes in females. It is similar to lofexodine which i used but that a 15 day detox. Im on day 33 after 3 years ob stuff ... terrible day today after 3 quite good ones... whicshing you luck

      Harvey

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    • leigh65923 diane61

      Diane,

      I sure can relate to what you have said.  When I first started on fentanyl (75 mcg patch) I was up the woods camping and after about a week I realized I was not acting quite right (not eating, running in to town for no reason, just kind of out of sorts) so I thought to heck with this...and took the patch off. That night was from hell, the spasms I experienced were like nothing I have ever had, it scared me to death, I was alone and thought it would never end.  After taking a handful of valium had no effect, I put the dang patch back on, and now, 15 years later I am trying to take my dose down from 100 mcg every other day to every 3 days and it has been so very hard, I never expected this, I have been trying now for about 6 months and after I hit 60 hrs and my legs start the barest twitching I run for a patch.  I know that makes me sound like a sissy, but I am damn scared of those spasms.  I think if I actually tried to completely get off the patch it would kill me.  I would want to be in a "real" hospital (no drug/alcohol clinic, thanks) with very compassionate docs who would not be afraid to make me comfortable.  And, worst of all, I depend on my hydrocodone (vicodin) to control my pain.  The only reason I wear the patch really is to stop any withdrawal symptoms and that, I think, is a travesty.  I am sure no one knew about fentanyl withdrawal when I started it, or if they did, they didn't tell me.  I hope you can find those 3 clear days and can have someone with you and you succeed in getting off this horrible drug.  I have found great support here, and I hope you will check in from time to time to let everyone know how you are doing with your quest.  I think this is the only place you will get some truth about it, and good advice.  We are the face of fentanyl withdrawal, and it is not a happy face.

      All the best to you.

      Leigh

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    • Kimmi0427 diane61

      Hi Diane,

      OMGosh that happened after just 1 WEEK of being on Fent patch? That entirely answeres my question Ive been plagueing this forum with!

      Thank you and good luck & stay strong! You can do this!

      Kim in Arkansas (US)

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    • billytom leigh65923

      Hi

      i am on it for 19 years i started cold turkey almost died went from 100 mg to 50 to 25 to non and i am ready to hang myself  my right side is nimb pins and needles i am sick as a dog with no help not pills nothing to help me at all 

      i want to put the patch back on but i wont i think getting off is doing more harm then good 

      dose anyone get out alive?? i am not sure how much longer i can go on this way its is so bad i am pulling out my hair 

      please someone help 

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    • Pointer99 billytom

      Hello billytom,

      First of all, I may sound like I'm repeating myself as I say this often in cases like you, but....19 years is a heck of long run of use to come off the patches. Can you give some background?

      Why are you coming off? Is it through choice, or are you forced to, or other reason?

      What was the time-span involved? I mean, from your usual dosage, you cut down by a half. Then for how many days/weeks did you go, before cutting down again by half, etc?? This is really important, because, (especially without the help of some short-term substitute, like another weaker opiate or a benzo just for a while) that is a very steep reduction. After 19 years, many people cut down at much more gradual pace.

      The short answer to your main question is, YES, virtually everyone gets out alive ( there are a few reported cases of tragic deaths, but I don't know the proportion. I'm pretty sure it is very, very low.) I, like many others I'm sure will agree, OFTEN wanted to die while coming off, or even just if I run out, or ran low, for some reason. But it is so important to hang in there and see it through. It DOES get better. If you relent, and put a patch back on, you may have come a long way for nothing! You may even be near the end of the withdrawal, and put yourself back to step one! That's  why it's important to know how long you've been doing this.

      As a minimum, follow the basics that get repeated over and over here : stay hydrated!! Many people find cola and other fizzy drinks are best as the sugar helps. Try some excercise, no matter how light. Try and distract yourself with funny books, movies etc. And perhaps most important, have someone with you, through this. If not someone physically there, then keep posting these forums. Post updates, questions, anything. Many people here will reply to try and help. And if things are intolerable, or you think you are really, very unwell then always consider the emergency room.

      I hope this helps even a little! Please post again, to update, and say how you're doing!

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    • scott22950 leigh65923

      hello Leigh

      I understand exactly what you have been going through. Just reading your post has brought me to tears as I have just experienced 2 and a half days of full withdrawalls with running out of patches completely (over the weekend with no access to any patches until monday afternoon). I have been in partial withdrawall 2 or 3 times in the past but was able to catch it in time and get fresh patches from my doctor. those partial withdrawall experiences were unpleasant enough with twiitching arms and legs and a feeling of being poisoned. The experience of full withdrawall though, with no access to patches was absolutely horrific. The twitching arms and legs turned into full blown uncontrollable spasms, like convusions, writhing around in agony kicking my legs and arms wildly moving around, mental thoughts of being in hell with no mercy and no relent. I was screaming into a towel all the time my limbs flying around and my back arching and contorting. Without exaggeration it was like being mercilessly tortured. Eventually after two days my neighbour heard my screams and drove me to the surgery where I was prescribed more patches. I have stabilised now the fentanyl has got back into my system but am completely traumatised and don't ever want to experience that again. It is actually worse than pain, which I am no stranger to as I have Crohns, the reason for being on these evil patches in the first place. I am fearful now that if I ask the docs to get me of the fentanyl they won't fully appreciate what this stuff does to a human being and will trivialise it. My dose is 75ug every 48hrs. How are you doing now trying to cut down from your 100ug ? Like you non of this was made known to me by my pain doctor when they started my on it. can you recommend any tactic for me that might help ? I am so frightened.

      Scott

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    • melissa7471 scott22950

      Scott,

      It has taken me 5 months to come off the 100mcg patch every 72 hours. The worst part has been the past 3 weeks. I've been Fentanyl free for 15 days today. If it wasn't for the people on this support group I never would have made it. The reason I had to get off was my dr decided that he will no longer prescribe pain meds to anyone. You are right on about the restless legs, arms, body. There's no way you can just stop. The people here taught me how to taper and that's what got me through. I'm glad I'm off though specifically for the reasons you mentioned. Making sure I had the patches ordered by the dr and the pharmacy ordered and filled them on time was getting exhausting. My dr was no help through this process but finally saw a neurologist who IS trying to help with the RLS. Still having issues but a little better. Still not sleeping very well if at all. But I'm just 15 days out.

      If you decide to get off we will be here for you.

      Melissa

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    • briian60689 diane61

      Wishing you all the best diane,i think we should have been told about these side effects by our doctors,not worth even goin to bed because i went eight days without sleep only building up the nerve to try again but iv 2 more operations coming up so dont know what to do

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  • janet81959 harvey81891

    It definitely gives you the worst constipation ever! I now have a full rectal prolapse and will need to have my colon removed through my abdomen to fix it, because of the severe constipation messing up that particular area of my body. Stay away from Fentanyl!!!!

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  • janet81959 harvey81891

    Harvey, you are correct! Fentanyl did seem to help my pain in the very beginning but perhaps my mind was fooling me and it was just the feeling of you for phoria distracting me from my actual pain. Having been on this medication for seven and half years, I agree it is not something that should be prescribed for pain unless it's for palliative purposes.

    and how are you feeling now Harvey? I still find myself wanting to 'punch' a different part of my body just to distract me from the horrific withdrawal symptoms.

    you mentioned you were on day 22, what day are you on now? How are you managing now, any better yet?

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  • janet81959 harvey81891

    Good morning Harvey,  I was wondering if you suffer(ed) from severe insomnia after stopping fentanyl?  I am on day 13 and am sleeping 1 1/2 hrs a night and twice I have slept 3 hrs. I feel I am losing my mind: memory problems, no pain control is very difficult, no bowel movements, extreme loss of appetite, weak and lethargic, laboured breathing, painful severe sneeze attacks...and a plethora of other withdrawal symptoms. 

    How are you coping? Have (do) you suffer from any similar withdrawal symptoms such as the ones I listed?

    Will I ever sleep again? So exhausted; headaches eyes dry, itchy, hurting. 

    My doctor started me on .1mg clonidine to calm my thrashing legs, body restlessness and anxiety. It has helped significantly with those symptoms but it has caused my BP to drop to 105/67 which may be contributing to why I am weak, dizzy, lethargic and possibly also to my laboured breathing (mind you, I was experiencing all of these symptoms to a lesser degree before I started this medication).

    Thanks for your support Harvey!

    Janet in Canada

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    • RafaUK janet81959

      Hi

      You must remember you have been on a Very Potent Opioid drug and withdrawal, if you have been on it for a while, can take ages to get through.  Get some glycerine suppositories to help your bowels to move. Any pharmacy should have them.  I am glad you are consulting a doctor, but sometimes they forget these little things.

      When you have been lying down, sit on the edge of the bed for a couple of minutes to give your BP time to stabilize, especially at night. Turn the light on or a torch, so you will not faint in the dark.

      Good luck and hang in, it will get better,

      Raphael in the UK 

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    • littletnt janet81959

      I read your post and was greatful the only thing I was suffering from was severe anxiety and hyper vigilant. Dr. gave me .25 mg Xanax (10 pills). I went from 25 mcg to 12 mcg and had only been on it for 10 months. Well..the 7th day was misery! I shivered, ran fever, increased blood pressure and every muscle in my body hurt. The Xanax helped but barely. Sleep was not an option. Bad diahrrea no apetite. I called my Dr. and he sent me to the emergency room. They gave me clonodine, bentyl, zofran and .50 mg Xanax. I finally slept 12 hours last night. My doctor also has me wearing 2 12 mcg patches...1 for 3 days and 1 for 4 days. I feel normal today!!! The er doctor said this takes 2 weeks. I am on day 8 so I am almost there.

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    • dan6281 littletnt

      It's very hard to get off fentanyl. For 13 years I was on 2-100 patches every 36 hours I was introduced to fentanyl by a pain Doctor after a 24 day coma, and a battle with MSRA, which was introduced to my blood stream during an operation. I removed my last 25Mcg. Patch 8 days ago. I'm finally free from that 3 day cycle and the monthly refill that has to be hand a delivered prescription. The one thing I can do now is stay away from addicting drugs. I did use cannabis to help with withdrawal symptoms. I feel it helped me very much. I hope this is helpful to you.

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    • patti2576 littletnt

      Just read your post and was wondering if you remember the doses of the meds that the emergency room doctor prescribed for you to take for the 2 weeks?  Also, how are you handling your pain for which you initially took the Fentanyl?

      I have been taking Fentanyl 50mcg every 2 days for approximately 12-14 years with Percocet for break though pain (3/day) and Tramadol EC at night related to 4 failed back surgeries, severe sciatica, and severe degenerative spondylosis C4-5,L3-4, bulging disc at L5-S1.

      We will be moving to a country that does not prescribe Fentanyl for anything, therefore I need to detox from it before we move from the US. 

       

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    • Pointer99 patti2576

      Patti,

      I don't mean to be intrusive, but I cannot resist the question - which is the country you are moving to that doesn't prescribe Fentanyl for anything??

      The situation is crazy. Here in the UK, things are really strict. Fentanyl, even when prescribed by a doctor, is still a "controlled substance". To obtain it from the pharmacy, you need a special prescription, written in exactly the correct legal wording, for example it must state the number of patches to be dispensed, in both numbers and letters, same for the strength (eg: Four (4) patches at One Hundred mcg/hr (100mcg/hr) each), plus more detail, including showing ID every time (bit like buying a can of beer in the US, LOL), the list goes on. Without thi exact wording, the chemist cannot legally, and will not, dispense it.

      Yet about 6 years ago, when still on the darn stuff, I was on holiday in a popular, hot European country (I don't think I should name it, just in case it tempts someone to misuse the information. Not likely, I know, but for my consciences' sake) less than two hours flight from London. My last patch came off in the swimming pool. I was petrified. I went to a local equivalent of a GP's office, to seek help. I got an appointment in half an hours' time! I walked in expecting the worst. I tentatively explained my situation (I was already starting to feel ache-y and a bit sick from being without). To my utter amazement, she was jovial, and sympathetic. Without checking ANY credentials, she asked, 'how many patches do you need?' And wrote, in scribbled handwriting, on a sheet of plain white paper from a pad, a script for 6 patches, which was even worded wrongly. The only proof it came from a doctor was that she had an ink blotter with a stamp - hardly difficult to obtain, I would guess..... The local chemist didn't bat an eyelid, and dispensed them to me, no checks, nothing. And they even were the "good quality" Durogesic brand, not some obscure dodgy generic!! Now I NEVER abused or misused the patches when I was on them. But two years later, we went back to the same country (but a different area) and some luggage was stolen from our hotel (a regular occurrence we later learned, in tourist season). I was sure my patches were in one of the bags taken, and thought "oh no here we go again". I repeated the process (different region, different doctor etc) and EXACTLY the same outcome happened. In this case I needn't have worried, since my patches were in another, safer bag with other valuables, after learning about the thieves during holiday season.

      ​Sorry to ramble - but your post made me curious, given my experiences in Europe....

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    • patti2576 Pointer99

      We will be moving to Panama.  It is not that they don't have it but the ONLY people who they will even consider giving it to are the end of life terminal cancer patients. I was told that by a Pharmacist and from a Dr. also. 

      I have already started my weaning process and I am down to 12mcg every 72. My pain management doctor also helps people through their withdrawals. So far so good, still having to use my Percocet 3 times/day. Will be taking the patch off for good tomorrow.

      I am going to be getting a spinal cord stimulator inserted shortly.

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    • Pointer99 patti2576

      Hello Patti2576

      i must say, it sounds like Panama have got the right idea; do not start people on these patches, unless they have (very sadly) terminal cancer or something else extreme.

      if only other docs were similar. So many Dr's in so many countries, are quick to prescribe it, then have nearly no clue about coming off/weanin/reducing.

      good work Panama I say, for setting an example!! Do keep posting about your progress!

      mark.

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    • LittleMissHope briian60689

      Hi Brian (or anyone reading)...

      Does anyone know if you can cut physically down a patch?

      I'm on 12mcg at the moment and want to stop but worried about the consequences of having no/little pain relief. I'm also on coproximol (I'm weaning off it though - take usually 5-6tankets a day and gave replaced my eve 2 tablets with paracetamol), robaxin (again I'm reducing these but can take 8 per day), gabapentin (only 300mg now as I'm weaning myself off that too- was on over 2500mg) and sometimes dihydrocodeine on top... I'm just worried if I come straight off fentanyl that I will have much more pain 😕 Thanks x

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    • melissa7471 LittleMissHope

      Hi Deb -

      I know of people on here that cut their patches but it depends on the type of patch. Mine was the reservoir type and could not be cut, but there are others that don't have that and I heard of people cutting theirs. So, to answer your question yes, but I don't know the exact details. I am finally able to say I'm pretty much ok after 7 months of hell. I can't believe you're trying to come off so many meds at one time. The last 25mcg of Fent were the most difficult for me hands down. I wish you luck in getting off this stuff. You can do it! Hang in there!

      Melissa

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    • LittleMissHope melissa7471

      Hi Melissa, not sure if the message was meant for me (little miss hope) or Deb? But thank you for your advise. It's a horrendous drug. To be honest tramadol was worse to come off for me cos of all the cold turkey symptoms (only lasted a day and a half though but I thought I was literally dying - I was on 400mg per day of the slow release). But fentanyl I found didn't reduce my pain - only went up to 25mcg but the side effects were horrendous (I was also on all the tramadol and full amounts of coproximol and robaxin, anti inflammatory meds and others too)... I halved my 25mcg patch after about 6months, then been on 12mcg a further 2 and a half years - so nothing in comparison to some on here. I accidentally forgot to change my patch ages ago and experienced insomnia and headaches for about 3 days.... but I went back on it cos it wasn't the right time (I was completing an acupuncture degree at the time)... but now I absolutely have to get off it - we are wanting to have a baby - god knows how I'm going to manage... but got to come off it all as much as poss really. So I'm heading for withdrawal symptoms in about a day or so I reckon 😕 Trying to ignore it.... when I forgot to change my patch for over 3 days last time I didn't really feel cold turkey symptoms- I was just in so much more pain 😕Xx thank you again for your supportive message xx

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    • melissa7471 LittleMissHope

      Yes - sorry about that - I meant it for Deb and will resend it to her. I hope you are right and don't have problems getting off of Fentanyl. If you do, we'll be here. I could not have done it without the support I found here. My doctor didn't help at all except tell me to get off of it. So, I do wish you luck. Take care.

      Melissa

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    • melissa7471 LittleMissHope

      Hope -

      No I just reread it and it WAS for you!!!! Sheesh! LOL!!! I was on the PAR (manufacturer) patches and had to tape them to wean off as they couldn't be cut. But I think the MYLAN patches can but I don't know anything really about cutting them except people have been successful doing it a little at a time. Good luck!

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    • LittleMissHope melissa7471

      Thank you Melissa... yeah GPs are a bit clueless sometimes - I guess they can't know everything (as understandingbas my gp is). I didn't have any advise or guidance really, just researched it myself and then reduced gradually. I remember reducing duloxetine and having to break the capsule open and mix reduced minute amounts into jam to wean off it! I wish I'd never been prescribed any meds at all... hindsight ey?! Good luck to you too - and thanks again for your message xx

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    • LittleMissHope melissa7471

      Thank you 😊 I've read if you cut some patches that they can leak out too quick and you can overdose - that's what I was worried about. But then like you're saying I've read that some patches can be cut and some people have been successful in it. The patches I have in the house are 'Durogesic DTeans Fentanyl' and the 'Matrifen' ones. I don't really know the difference between what they are or how they work - I've read they work like a 'matrix' - but that might mean they need the whole surface area of the patch to work 😕 It's confusing x

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    • LittleMissHope melissa7471

      Thanks for your advise. I'm not even sure they help my nerve pain though to be honest - I was prescribed pregabalin (then swapped to gabapentin) in 2009 when I was diagnosed with syringomyelia on top of my SCI... it was their automatic suggestion. But then I saw a consultant at the Walton centre following a Pain Management Programme- when he examined me he said that gabapentin wouldn't be helping my nerve pain (in my right leg) anyway. I was on over 2200mg per day a few years ago but reduced it to 300mg (I take just 100mg 3x/day) which is a tiny amount (and I will becstaying on that for a while now anyway). I use auricular acupuncture in my ear which seems to help much more anyway.

      But I will bear in mind what you've said about reducing gabapentin at the same time. I think to be honest when I come off the fentanyl I will have to take more of my other meds for a time anyway - I have dihydrocodeine too and anti-inflammatory meds. I just want to be off fentanyl!!

      Do you mind me asking... what meds are you on now? What is your injury? It's so difficult isn't it. But encouraging and inspiring to read other people's stories.

      Thank you x

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    • melissa7471 LittleMissHope

      Hope -

      I have Lupus and Fibromyalgia. I recently saw a pain management dr and explained I was still having withdrawals from the Fent. He couldn't believe how much Ive suffered and my primary dr didn't help. He put me on Cymbalta and within 48 hours my symptoms had deminished significantly! I couldn't believe it. I still have Hydrocodone as well but not having to use it too much. I still occasionally have restless legs, in fact I was up all night and they're still going! But before, I would be up 80+ hours with it. So it is getting better. The Cymbalta also helped with feeling like ants biting me or something crawling on me, as well as anxiety. I've never had anxiety until Fent withdrawal and I hope I never do again! I've only had it twice since being on Cymbalta and I've been in it about 3 weeks. It also stopped the nerve pain I was having. I'm really glad I went and I'm going to be looking for a new primary care dr too. The other meds are supportive meds like Plaquenil, Methotrexate Injections etc. But for pain, it's Cymbalta and Hydrocodone.

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    • orb LittleMissHope

      Hello LMHope,

      Regarding Fentanyl.. Yes you can cut the patches as mentioned as long as they're the Mylar type and NOT the gel filled type.. Those are the ones that can leak out.

      I've been on Fentanyl along with 2200mb Gabapentin etc but like you found that the Fentanyl didn't really do anything (100mcg's)

      I've been on all the same drugs as you for a real bad back (crushed discs) and a bone tumour in my pelvis which after mjor surgery they can't get rid of 100%. So I'm now on the max allowable doses of Tramadol, Morphone, Celebrex and paracetamol amost other things to reduce their symptoms.

      To be honest I didn't actually go through much withdrawl from Fentanyl as the dose of Tramadol doses I was put on mostly covered it. I was however taken off Dihydrocodeine a few years ago and Geeeez, the withdrawls from that lasted a week.. Just like full blown flu with the shakes, no sleep and body temperature swinging all over the show eek.

      I wish you well on your withdrawl efforts and hope the horrible Heebie-jeebies as I call them pass real soon.

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    • LittleMissHope orb

      Hi Orb, thank you. And sorry to hear about your situation 😓 There's so much sadness in the world- what people have to go through breaks my heart. My injuries and situation stems from when I broke my back in a car accident when I was 16 (1991) - I was the unlucky one wearing a lap belt in the back 😓... I was told I wouldn't walk but miraculously proved everyone wrong - except for pain - meds have increased as you'd expect over the years. Rehabilitation methods probably not so good back then either. But then with syringomyelia, hypersensitivity and fibro on top, things are a bit of a mess to say the least. But I'm still determined to get off my meds... need to desperately x

      How do i know if the patches are gel ones or the ones you say? Thank you for your kind words of support x

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    • LittleMissHope melissa7471

      Hi Melissa, oh my word you have been through it - and still are by the sounds of it 😓 My heart goes out to you and keeping my fingers crossed that cymbalta works out for you... anxiety is awful too - I suffer on and off, together with depression etc. Just awful. Wishing you well and thanks again for your support and advice xx

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    • orb LittleMissHope

      You'd be much better checking with your chemist on the type of patch you have.. I only know as when I cut one of mine open there was no gel detected inside it. My chemist told me that the ones I was one could be trimmed down as I was asking the same question as you.

      I believe though that the gel type are not really available in the UK anymore and most are prescribed the mylar/matrix type where the Fentanyl itself is in the patches material.

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    • melissa7471 LittleMissHope

      Yes, I totally agree.  In my patches, you could actually see the medicine between 2 clear plastic sleeves.  But Orb is right, it's best to check with your pharmacist.  I'm in the states so things are different here. I'm not at all familiar with your brand of patch.  Take care and keep us updated when you can.

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    • carol77581 LittleMissHope

      Hello. The Mylar type haveno gel and can be cut. There are various brands. They are literally like Mylar tape. I didn't like those and like many others I went cold turkey from 25mcg. Melissa and I both had some weird withdrawal problems such as little blister sores and severe restless leg syndrome. I've been off since November and still dealing with legs pains but the initial back pain is not as bad as it used to be. I was on fentanyl for 17 years. If you are determined you can do this and we all have ideas to help you over the humps

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    • carol77581 melissa7471

      So glad to hear you are finally getting relief. I am still on 3-4 Vicodin a day so maybe cymbalta will work for my legs. I'm taking pain meds more for my legs then my back or ankle. Still hobbling along with that thing. You have really been having a rough time and maybe this is the one that will work for you. So many people are suffering with this drug ...fentanyl

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    • LittleMissHope carol77581

      Hi Carol, sorry to hear of your battles but thank you so much for your advice and support. My patch is due to be changed tonight but I'm just going to leave it on and not change it - I'll let it fall off on it's own. It's scary but something I have to do. Thank you so much... x

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    • melissa7471 carol77581

      Hey Carol -

      Good to hear from you. Yes Cymbalta has really has helped. I still have leg trouble maybe and hour or two in the evenings but not 24/7. It's helped with pain and also anxiety which has been a blessing. So, you might want to ask if it's something that could help you. Oh, it's also an antidepressant which I need.

      I finally feel like I'm over the hump of withdrawals but I'm still a little scared that something may happen. It affects you psychologically like that! I think of you often and hoping your ankle is on its way to healing.

      M

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    • carol77581 melissa7471

      Im getting a little better each day. Now working on walking three miles a day on treadmill and trying to get off the ten pounds I gained since I fell. I still don't sleep and it makes me crazy. I'm so tired around six and nod off and then up all night. I'm very irritable at work so maybe I need an anti depressant as well. I also have a lot of weird family issues going on so it's all getting to me. My house partners son and daughter and law just moved in with their dog and this is half my house but I get no say. Sorry I'm venting. I'm going to ask about cymbalta and I am so very happy for you that you are making progress. It's going to take a long time for our brains to make that dopamine again but it will get better. Sending you a big hug

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    • melissa7471 carol77581

      3 miles - that's great! The progress, even though things are getting better, is still tenuous and let's me know who's in charge once in a while. I've been awake since Wednesday morning UGH! I'm in more pain today than I've had in a long while. I'm praying I'm not going into a Lupus flare because that's sort of what this feels like. My legs jumped all night last night so I'm hoping the pain is just from that. Anyway - really glad to hear from you! Stay in touch!

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    • carol77581 melissa7471

      Oh no and you were finally getting a break. This sucks. I know what you mean when you have a good day but live fearing how soon it will end. I finally gave in a few days ago and cut up the last two boxes of patches. I needed the security of knowing I had them.

      It's a crappy morning and my legs feel like they have mid flowing through them. Once the Vicodin and coffee kicks in I'll try for my three mile walk and begin the day. No plans. Too anxious. This is a daily new problem. Super anxiety for no known reason. I want to snap at everyone.

      Wishing you a pain free day for at least today so you have a chance to regroup for the next round. Take care

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    • carol77581 LittleMissHope

      Just checking to see how you are doing now that the patch is off. After theee days it is not effective so you should be over the initial withdrawal. Just checking to see how you are making out. I don't remember how long you were on these thing

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    • LittleMissHope carol77581

      Hi Carol, thank you so much for your message. Means a lot that you've thought of me. I am managing thank you - had a few sweats yesterday but think that was more to do with the fact I'd forgotten to take my other medication before leaving the house! Oops! Not good timing! I saw my gp yesterday morning too (it was on the way to him I realised I'd forgotten my meds - I took them whilst at the app - quite funny really). Anyway he said I should just top up my meds with dihydrocodeine and full doses of my coproximol and robaxin - that way I have more opiate to deal with the additional pain. Hopefully only temporary. I am also seeing my pain consultant mid march too. I'm in more pain at the moment - feel I need oiling! It's in my hips, lower back and glutes- kind of like a sciatica type pain. I've been on fentanyl for about 3-4 yrs- initially 25mcg but then I went down to 12mcg after about a year. I was also on massive doses of tramadol and gabapentin, and last year was on oramorph too... considering I've been on all that but now I'm just on mainly coproximol and robaxin with a tiny bit of gabapentin and dihydrocodeine I'm really pleased- I just hope I can maintain it and not lapse and put another patch on.

      How are you anyway? Are you managing?

      It's so lovely of you to message - thank you x

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    • carol77581 LittleMissHope

      I know that comfort is number one goal. It seems you are on so many meds I am not surprised you have sweats. I'm just finishing menopause so sweats are a daily annoyance for me. I only want to say that if there are any drugs you can cut out I would do it. The benefit of fentanyl for me was I did not have the roller coaster high and low like pills but then after long term use I had awful legs issues. Restless painful flu like symptoms. I have come to the conclusion I will always live with pain but as long as it's bearable I'm fine with that. I just want you to be sure you are not hurting your organs long term and on the minimal amount needed to have pain management. This forum is very helpful. Many of us are happy to share our knowledge and experience. Best to you

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    • LittleMissHope carol77581

      Thank you so much again Carol. I have been on meds a very long time - since 1991 when I broke my back. I was put on alsorts at that time, but then settled on just coproximol, robaxin and ibuprofen. I wasn't aware then of the harm to my organs at all and doctors just prescribed. I recently trained as a TCM Acupuncturist and have learnt the dangers of medications and the benefits of complementary treatments (and exercise!) but I just wish I'd known sooner... anyway, I will reduce what I can for now. I just thought Fentanyl would fe the bestbto get off first then I can wean off the tablets in lesser doses. Been in a lot more pain today though and struggled walking. I can't walk far anyway but today I struggled so much more. Time will tell I guess 😁

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    • carol77581 LittleMissHope

      You have made milestones. Be proud. I wish there was a miracle for you. I know how hard it's been and how you struggle. I love you ambition and positive attitude. My next step is meditation and yoga. I'm laughing because I don't think it will help but my mind needs a break from life. Just keep trying to find pleasure in each day. Love to you

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    • LittleMissHope carol77581

      Hi Carol, thank you again - you're always so supportive 😊. You're right, some days I've felt like giving up, but then somehow find the strength to pick myself up. Pain is so unfair. And as for meditation and yoga - they will most definitely help you. I'm supposed to meditate (recommended through the pain management program I went on, and also through the acupuncture degree I did). It's just hard to keep it up. Another thing you might look into/try is Mindfulness and also Qi Gong (and even acupuncture). I am doing Pilates at the moment just one-to-one to try to strengthen my core. It's so difficult though. I wish you lots of luck with your yoga and meditation. Take care.

      Ps I woke up feeling like death this morn 😓Everywhere aches like hell... gonna try to resist putting the patch back on though... x

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    • carol77581 LittleMissHope

      I'm having one of those painful want to jump out of my skin days with aches all over and painful pins and needles in my feet. Guess that hike yesterday was a bad idea even though I wore a brace. So I'm starting with a Percocet and coffee then onto some icing of my legs. Then magnesium that is supposed to help with a rubdown of peppermint and eucalyptus spray on all effected areas. I know you probably need to just bath in the stuff. Hopefully all of that will either give me relieve or distract. Then I move onto some stretching and kick my but out the door to go enjoy a day off work. It's a mind game for me every day. Keep being positive and take the pain pills provided to get moving. I'm still detoxing and suffering from the withdrawal after 4 months. It do s get easier from week to week but there are bad days when we have rain storms or extreme cold. Hope there is a remedy in there for you to get relief. Carol

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    • melissa7471 LittleMissHope

      Hey Hope - (and Carol)

      Are you having any withdrawal symptoms yet (other than pain)? Any upset stomach, restless legs or leg cramps, sweats or anxiety? I've been thinking about you since you said you weren't going to put a new patch on. I'm hoping you'll be ok because of the other meds you are on.

      I've been following you and Carol and I'm soooo thankful for the support found here. I have a follow up with pain mgmnt Dr tomorrow. The Cymbalta has helped quite a bit and I'm very grateful for that. But I'm still having leg issues. I was awake from Wed am til Fri night, and I jerked so hard that Fri am I could barely move because my back hurt so bad. So I'm having severe back pain and lower extremity pain. Hydrocodone helps a little but I just need for the RLS to subside somehow. On the positive side, I've only had maybe 3-4 instances of anxiety with the "creepy crawly's." I was having them everyday so I'm happy about that.

      I have confidence that you're able to get through this. I'm honestly thinking that because of your other meds you'll be ok. Oh - I have a question. Is your dr pushing you to get off the patch or is it a personal decision? I'm just curious because mine was mandated because he's not prescribing pain meds anymore to anyone.

      Just wanted you and Carol to know I'm thinking of ya'll and following your thread.

      Virtual hugs to you both.

      Melissa

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    • melissa7471 carol77581

      Carol - I'm 7 months and one week off the patch. I don't know how you're doing everything you are! See the note I sent to Hope and you. The Cymbalta is helping with the skin crawling and especially the nerve pins and needles. The nerve pain is gone! The anxiety and skin crawling - in 4 weeks on Cymbalta I've only had it 3-4 times. The big thing is my RLS. It's still an issue. Now, it IS better - but - it's still every night. Usually only a couple of hours but I was up for 60+ hours this past Wed, Thurs & Fri. I'll take a couple of hours because I can still get some rest. But also, sleep is highly interrupted. I'm awake off and on all night.

      I admire you for doing all the physical things that you are doing.

      I'm not there yet. I did attend a Mardi Gra Pet Parade and lunch with friends yesterday. I was thankful for that. But hiking or walking 3 miles? No way! Keep it going!!!

      Virtual hugs!!!

      Melissa

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    • carol77581 melissa7471

      I'm having mostly restless leg pain and lots of anxiety lately. Thinking maybe I need to be back on Zoloft but it could be due to my thyroid. Ran out of meds about aknth ago and didn't want to refill until I got my new blood work results. I'll call dr tomorrow to get that refilled

      Aside from the two items above the back pain has been minimal. Most of my problem is my leg

      Pains and that is aside from the ankle

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    • carol77581 melissa7471

      Thanks so much Melissa. I could not do all this without the supposed and knowing although there is pain it's not going to hurt me and eventually the core strength should help my back. Also as much exercise as possible makes it easier to sleep even though it sucks it's better than none. It's catch twenty two. You need to move to get stronger but then you hurt from moving and need more meds. I figure eventually the exercize pain will go away and I'll be stronger and have a better quality of life. One thing that really sets off my RLS is sitting. It's a fact so don't sit still for more than 15 minutes and then go get a drink or do a load of wash or dust a table. I never sit still. Watching a movie means a guarantee for RLS. I use ice often on different part of my legs. I don't have as many other medical issues as others. I have nerve damage in my back and the stage 3 sprain and typical herniated discs bulging discs and some other stuff just being older. I also use heat or ice on my back for pain but it is not nearly as bad asa the leg pains.

      I'm really trying to have a positive attitude and work toward a healthy lifestyle

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    • melissa7471 carol77581

      Carol,

      I saw the pain management dr yesterday and over the next 2 weeks he's going to put 8 injections in my back. 4 at a time. He's hoping it will give me some relief. I was supposed to see the Rheumatologist today but I've been up since Sunday w RLS and in no shape to drive 5 hrs round trip. My wife will take me in a couple of weeks. I'm glad you're able to do some exercise. These last several days I've been in more pain than I have since coming off the patch. THEN I had a bit of anxiety last night - possibly from so much pain?

      I'll write more when I'm up to it. Take care of yourself! Hugs!

      Melissa

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    • carol77581 melissa7471

      I had spinal injections years ago and they didn't work but I have different issues and didn't follow up. Also I don't think I had four so this might be the trick for you. Ironic you talked about pain sleeplessness and anxiety. It hit me hard these past few days so I decided to go back on anti depressants and anti anxiety meds. Yesterday I just cried and took double my normal pain meds. I was up until three and jad to get up at 5 for work. I hope we are just suffering from some spring fever. I have had really bad RLS for the past 4 days or so. I thought things were calming down and then it hits again. Today I started with non stop sneezing. I mean literally 200 times a day so it gave me a headache and I constantly feel like I am going to sneeze again. I read someone else had that issue when they went off fentobit or appeared early. This is so weird

      I'll be praying those shot are you miracle. You are due one and I'm sure your wife would like to have her partner back sleeping in the bed. I hate the lonely painful nights. They are the worst.

      Guess we just have to keep doing trial and error. Still have not contacted a pain management counselor. I'm afraid they will take away the meds I do get and I need them. One day. Thanks for keeping me posted and sending back healing hugs

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    • melissa7471 carol77581

      The sneezing went on for the first few months and I thought it would never end.  Now it's just occasional.  Are you completely off patch now?  I think you went off before I did.  Yes, this RLS is making me crazy.  Every time I start to fall asleep I start kicking!!!  The pain management doctor is the most kind, caring and compassionate Dr I've seen in a very long time.  He is so sweet.  Just a really nice guy.  He said that the injections are not epidurals.  These are "facet" injections.  I asked him if they normally help with RLS and he said not usually BUT - he's hoping it will in my case.  He's injecting in 4 different places in my back, one on each side of the vertebrae that are involved.   Then I go back a week later for the same thing.

      I am in the worse pain I've been in since stopping the patch.  I'm really praying that I'm not going into a Lupus flare.  I don't think I am.  I think it's just from my legs kicking all night and the legs, hips and back pains are caused by that. 

      Stay in touch.  I really hope Actiq is okay.  He's got a lot going on but I miss hearing from him.  Hang in there!

      Peace & Hugs!

      Mel

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    • LittleMissHope melissa7471

      Hi Melissa (and Carol),

      Thank you so much for your message. Sorry it's taken ages to reply - been meaning to but got distracted.

      I'm overcome by the support I've received from you and Carol - it's so nice that people care enough to message and see how I'm doing. It means a great deal 😊

      I've been reading posts and hadn't really ever had RLS before - or at least nothing I'd call "RLS" previously. I have always suffered a nervy kind of pain permanently in my right ankle/foot from my accident in 1991 but over the years this got progressively worse. It now extends up the side of my right leg (and front) too but mainly just to my knee. Over the last few years I've struggled with footwear - thinking it was plantar fasciitis- but my neurology Physio said it was neurological. I've been managing the pain but still struggling. But since getting off fentanyl (I've kept the patch off completely (yeayy)) I've been getting a burning sensation in the bottom of my feet and also my nerve pain has flared up some nights significantly and has stopped me sleeping. I have had to up my dose of gabapentin on the night - I'm still trying not to take too much though - I take 500mg in total each day (200-300mg at night). My pain was sometimes 'jerky' before but reading your posts I think it may actually be RLS???

      I've not suffered sweats - only 36hrs after I didn't change my patch - but I think that was only due to my having forgotten to take my other meds too. I've not suffered headaches either - presumably cos of my other meds. I started by increasing the dose of other meds and then added dihydrocodeine- but now I rarely take dihydrocodeine and have started to reduce the odd one or 2 tablets throughout the day too.

      My doctor didn't know I was coming off fentanyl at all - in fact I think he'd rather I'd come off coproximol (as it's no longer licenced and that's what we talked about me starting to reduce - which is still the case now, and replacing with paracetamol. I took the decision myself to come off it as it was the last medication I was given 3-4yrs ago (when I stopped walking again) and although I was on 25mcg initially, reducing to 12mcg about a year later - again doctor didn't realise I was halving the dose. I just couldn't stand the thought I was taking it and didn't want to depend on it when I never used to have to take morphine.

      There is also another reason for me wanting to reduce my meds and come off what I don't need - I want to have a baby. For the past year and a half we didn't think we could try cos of my meds and the syringomyelia I have - we entered the horrible world of surrogacy. I've been through 3 ivfs, abused by an agency and 2 surrogates and had money stolen... we just can't take any more. So although it's not ideal if I fall pregnant due to my spinal injury and meds, I think we have a better chance if I'm on safer meds - I am waiting to see a specialist dr over that side of things too. None of this is ideal though - and we are probably clutching at straws now anyway hoping for a miracle as I'm 42 this month... so here's hoping for future miracles for us all, esp on the pain front!

      How are you doing Melissa?

      X

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    • LittleMissHope carol77581

      Hi Carol,

      How are you feeling?

      Sorry I've been off the radar a bit... trying to adjust I guess.

      Where do you live? It's just I wouldn't have thought pain meds would just be taken off you for seeking pain counselling. Pain is so hard to deal with! That would be unbelievably unfair.

      I've been on a pain management programme a couple of years ago - at the Walton Centre in Liverpool. And from reading your posts, you're doing everything you can be doing - exercise is key (which I'm guilty of not doing on a daily basis, but I try), and pacing with everything... planning goals/tasks no matter how small and thinking about breaks, rest, stretches before, during and after... breaking things down into doable amounts... meditation/mindfulness, and understanding that what you're experiencing is normal for your injury/illness/condition - a lot of people for example think they're going mad or starting dementia, but in actual fact forgetfulness and other symptoms are all quite common with certain types of meds.

      The hospital has a website for info on pain management - but I think you'd see you're doing just things already probably without realising it.

      I do think the only difference though about being in the programme is meeting others in the same boat (even from different injuries etc) - it makes you feel normal and accepted and reassured xx

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    • LittleMissHope melissa7471

      Hi, I've had facet joint injections - they were injected using an X-ray machine too - sadly they didn't work for me - in fact I was worse for about 3 moths afterwards. But every condition is different and I guess they wouldn't suggest them unless they worked in the majority of cases. I really hope it works for you.

      Another type of injection to consider might be steroid injections. They helped a bit when I was really bad (when I stopped walking 3-4years ago). My spinal consultant did those.

      Did you mention sneezing in one of your messages?? It's just I've been overly sneezing for the last 4-5 days which is really odd for me. The other thing I've noticed since stopping fentanyl is that I don't appear to be as sensitive to our 7mth old semi-long haired kittens!! The are ragdoll/Tiffany cross so have wispy hair which used to irritate my eyes. But now that's gone. I thought the slight 'allergy' I had to them had changed to sneezing! But when reading your 'sneezing' posts I'm thinking it might be more to do with my fentanyl!!

      And as for my nervy leg pain / RLS (god knows what it is) - why is it it only happens at night??! I get so frustrated with it. It hurts like hell and sometimes I've had to take a diazepam and top up my other meds just to knock myself out to sleep! I was up the other morning until 7.30am awake in bed. I felt so sorry for my other half who needed sleep as he had to leave for work at 7.30am - he got no sleep at all. I've not known pain like it - so annoying that nothing works!! Any ideas how to manage it without increasing my dose of gabapentin further? Thanks xx

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    • melissa7471 LittleMissHope

      Yes - I sneezed for MONTHS!! It was terrible. Even now I still sneeze more than I used to. Also, yes if your legs are jerking you've got RLS and it is painful, especially if the nerve pain has kicked in. What I figured out is that after being on the Fent, my nerves were waking up after being suppressed for so long. So again, the nerve pain was only solved with Cymbalta added last month. Oh, my RLS doesn't happen just at night. It goes 24/7 but it's worse at night.

      The pain Dr is using steroids in the facet injections so we'll see how it goes. I really hope it helps. He'll do it under fluoroscope at his office.

      I feel for you. Just hang in there - if I can do it so can you.

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    • carol77581 LittleMissHope

      Hope you are definitely on the right track. Yiur chances of pregnancy are much greater with less drugs for sure and I'm 56 and just now went through menopause. 42 is not too old these days at all. Your mission now is to get as healthy as possible. You can do this.

      Remember that although you will have more pain as you lessen your drugs it will be bearable if it's for a purpose and it's not harmful to yiur well being. What I mean is there are meds you need so you are mentally ok. I have been on a mission to find alternative medicine such as water therapy Togo stretching even if sitting on a chair. Acupressure cold compresses hot baths peppermint sprays icy hot and sometimes all of them at once.

      Because of my ankle injury on Oct I have that same foot burning. I know it will be at least 8 months before that is better. I also wake with internal ankle bone and leg pain but move around and get back to sleep. I keep a chilled gel compress next to the bed and a heating pad. O grab whatever I need at the moment.

      Positive thinking girl and work toward good diet and all the moving you can do. Did I understand you are no longer walking? Are you walking now?

      Also sorRy to say but that jerking is a form of RLS. Welcome to our group. Hoojg ots not jump out of your skin painful. Pay attention to what sets it off. Hot baths can feel good but set off RLS as well as heating blankets or heavy bedding

      I'm praying for some good news soon. You CAN do this. Relax too as stress is not helpful. Sending you lots of fertile thoughts. Carol

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    • carol77581 LittleMissHope

      RLS is nasty and happens at nigh because it's when you rest. As your muscles relax the tendons start to shorten and create a jumpy feeling. See my other posts about avoiding hot baths or shower. Do stretching and massage your legs. Peppermint spray help cool the skin or maybe just distracts me. Cools towels on your legs.

      We all know it's freaking painful. I try not to sit too long and will kneel on the floor and lay accross the ottoman for relief to watch tv. I constantly crack my knees At night we relax and sit to watch tv and that resting is the RLS. Search the net and let me know if you come across other suggestions

      Others have reported the sneezing. It didn't happen right away. It was a few months later and hot for days and days sneezing like 200 times a day. At my age 3 sneezes and o pee my pants

      Hope some of this is helpful and lets you know we are or have been there. Best. Carol

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    • melissa7471 carol77581

      Thank you Carol.  I have faith that they will.  I told my wife today that I think the lower half of my body is starting to give out because I've been doing this for so long, but I really think the injections will help.  I'm counting on it!  Thank you for the encouragement!

      BIG HUGS!

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  • deb73201 harvey81891

    Hi I am on day 3 coming off Fenthyl 100 patch now on 75 I feel so bad flu feeling headache body pain .  Is this going to get worse? My doctor gave me 4 75 patches then I will drop to 25 and so on . I went in last week and told them I want off I don't feel like it was taking away my pain . But I still have the Dilaudid.

     

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  • deb73201 harvey81891

    I am coming off Fent patch . I am at 75 now 3 more to go then to 50 so on my worrie is now my right back kidney area hurts so bad not sure if that is anything that anyone else has has . Feeling a bit better then day one . 

    Thanks for for any advice 

     

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    • orb deb73201

      Sounds like your doing well coming off the Fentanyl, It's a terrible thing to come off especially if you try to do it too quickly. Youre doing it the right way. The flu type symptoms are a normal reaction to coming off such a drug and should be passing off slowly.

      You'll find that you'll get all sorts of weird aches and pains when coming off somthing you've been on for along time, I wouldn't worry too much at the mo but obvioulsy do get checked out if it carries on. I've had various different pains too that I don't remember having previosly whilst taking various new medications and coming off them.

      I was lucky really as I was only on 75mcg's of Fentanyl for a couple of weeks or so, and I opted to come of it as it was doing nothing for me. I can honestly say though that in my case the withdrawl symtoms coming off Dihydrocodeine where worse than coming off the Fentanyl. However now I'm on max dose Tramadol and Morphine amongst other things for pain.. So I'm not worried about the withdrawls as i'll likely be on this sort of thing forever.

      I hope the rest of the weaning process gets easier for you deb.

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    • deb73201 orb

      Thank you Orb 

      i am off the Fent patch but it was a hell of a ride. I was so ill wanted to just die now I am in more pain but I will deal with it . Now if I could just feel like my old self and get some sleep . I wish anyone hat is coming off the Fent patch to please take it slow I think I went to fast . Good luck to you all I am happy to be off but now I need to find w pain med to help me better . 

      Thanks to to you all for helping me 

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    • patti2576 deb73201

      Deb,

      How fast did you go?  I was on 50mcg for years and when I started weaning myself off I extended the time first, then had Dr. drop me down to 25mcg and did same process with that, from there down to 12mcg and today I finally removed that. I am still taking Percocet 3x/day for the severe pain.  I did experience flu like symptoms and when I first started I had migraines and diarrhea but now just generalized aches and pains, which I was told to expect.  My Dr. will be inserting a spinal cord stimulator to handle the pain.

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  • justine21487 harvey81891

    Hi there. I have beenon Fentany 100 mcg every 48 hrs for almost a year now for extreme nerve pain in my residual limbs following a double below knee amputation. I am detoxing for different reasons. My doctors here in Toronto WON'T perscribe it anymore because they are afraid of what the College of Physcians & Surgeons may think. So they give me this stupid drug and only offer me Suboxone, which I don't even know will work! I am on day 3 of detox and feel like DEATH!! And the worst is coming on day 5 when I have to go COLD TURKEY for 12 hrs in order to start the Suboxone. I don't know if I will make it through, and I think this is the dumbest way to medically detox because I am in so much pain, and the Docs are the ones that started me on this and now after a year with NO improvement in my extreme pain that stops my life and confines me to a wheelchair because I cant wear my prosthetic legs due to the pain! I don't understand why the doctors saved my life from an invasive Strep A bacterial infection, cut my legs off, if I am left to a life like this? Or kill me with this drug and leave me with all this pain? I guess all I can do is try. I'm a 42 yr old law professional, married, mother of 2 young beautiful girls, now a double amputee (who can run on the treadmill, when I'm feeling pretty good, on those prosthetic legs, I'll have you know) now hurting really, really bad...

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    • acidjazzok justine21487

      I cant compare with what you have been through, but survived a 12 year run being on 2 of those 100 microgram fentanyl patches and 4 of the 60 mg ms contin morphine tablets all the time. i was so sick I would puke 4 or 5 times every morning and sweat 4 or 5 Tee shirts wringing wet and have to pace the floor a couple hours between being sick and decided finally I had enough and wanted to try to change my life, I got the dry fentanyl patches and began to trim them each time a little more as I went for 2 calendar years and had to literally puke my way through that 2 years and then got off the ms contin, and have never been more glad I did this and would never get back on thtat stuff again, I ended up in the oklahoma heart hospital 3 times during my withdrawal and thought I would die after discovering I have congestive heart failure and atrial fibrillation now.

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    • leigh65923 justine21487

      Oh Justine, you break my heart. What you are going thru is so unfair and unjust. You did not ask to be put on Fentanyl and they are making you suffer  I am going to ty.to write you a personal message as my browser is having a terrible time with this site and it has taken me 5 minutes to write this little bit.  The doctors are covering their own asses because fentanyl has become demonized, and it is well-known how hard it is to come off of it.  People have died trying.  It sounds as if you have some not-very-empathetic people workng with you, there is no reason you must be in so much pain and agony to come off of a drug they decided to prescribe you, you need to stand up for your rights, we all do. We are not bad people because we were prescribed this drug, and we deserve to be treated kindly and gently when we come off of it, even if it means becoming addicted to something else, because I believe the "something else" has got to be easier to get off than the fentanyl.  I still struggle some days with my 72 hour change patch instead of 48 hour, and I think it has been 6 months.  I just cannot stand the horrible cramps my legs start doing.  Please, please, please stay in touch and let us know how you are doing.  You are in a good place, with caring folks who will support you any way we can.  Guess I am not going to send that personal message because my browser finally let me type more than one letter a minute!  Keep in touch and fight the good fight, we are all hoping the very best for you!

      Leigh

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    • melissa7471 leigh65923

      Leigh,

      I forgot to ask you, are you on Requip or anything like that for restless leg/leg cramps? Also I've read on other threads about a med called Clonadine ( aka Catapres). Neither of these meds are opioids or addicting and help with withdrawal. I'm already on Requip because occasionally I get restless leg so I only take it if I need it. BUT - I'm COUNTING on it to help me when I start detoxing in Oct. Catapres is a blood pressure med but people are saying it helps with opioid withdrawal. Just wondering if you've tried either or if you are familiar with them. Thanks!

      Melissa

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    • leigh65923 melissa7471

      Melissa, Nope, I am not on either, but did see something about Requip and I will ask for it from my new pain management clinic.  Now that I can go to a new one, I am pondering whether I really want off the patch, I am so scared of the withdrawal.  I know I sound like a sissy, but if the docs will work with me I will try.  Just have to make the phone call to get an appointment.  I will probably put that off, I am a procrastinator.  How are you doing these days?  I hope all is well with you.

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    • melissa7471 leigh65923

      I live in Orlando area and Im gay (my wife and I have been together 34 years).  Things have been pretty bad here. We didn't know anyone at the club but I did have dealings with one of the girls and I have loved ones that lost people.  Our church (Joy MCC) has been in the midst of the chaos.  We are only one mile from the scene and we are considered THE gay church of Orlando.  My wife is one of the leaders in the church and has worked tirelessly.  I was there all day Sunday and it took its toll.  I will be going back tomorrow if I physically can.  With Lupus, you never know, but its nothing compared to what others are going through.  Thanks for asking, I didn't mean to carry on.  Today Im hanging by a thread.

      Melissa

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    • justine21487 leigh65923

      Hi Leigh,Thanks so much for your kind words! You are absolutely right about fighting for our rights, but the doctors are bigger and better than the patients they treat, that is very much apparent! Here is my update: It has taken me awhile to come back here because I have been so traumatized through this thing, that I just couldn’t talk about it. Writing this now is even difficult, because I will have to relive what happened, that was so terribly wrong!! I made it to day 4 of the Fentanyl detox, but I was out of my mind at that point. I had not slept for 3 days straight…I couldn’t close my eyes, even if my life depended on it! It was like they were wired open! I was so exhausted. I had been in bed for 3 ½ days, unable to care for my kids, unable to care for myself! Using the bathroom was almost impossible because it meant I had to get out of bed and into my wheelchair! Even sliding over to my bedside commode hurt like hell! I had soaked my bed with sweat, twice; even the mattress was soaked! And the tremors I was having were getting so severe, I had to hide myself from my kids so that I wouldn’t scare them! My husband was mad at me, because he presumed I was being dramatic or that I had taken something I wasn’t supposed to and he walked out on me! So Friday night (day 3) going into Saturday (day 4 of detox) at 4am, I had decided I just couldn’t cope anymore. Even though I had been contemplating for hours what to do, I ended up putting a patch back on. I was so mad at myself that I just couldn’t fight through the terrible, horrific pain that took my breath away. I had failed at getting through the detox, but I couldn’t imagine what day 5 (Sunday) was going to look like!! I just couldn’t think straight and face going cold turkey for 12 hrs before starting the Suboxone (The stupid drug that has been pushed in my face for months now!!) So I felt immense guilt; I had let my kids down (two girls, age 5 and 12), I had let my husband down and my marriage was already falling apart, I had let myself down! I thought I was stronger than that, but I wasn’t, obviously. I was halfway through the detox, why wasn’t I stronger?! So I emailed my doctor who is more of an Addictions specialist, but did deal with chronic pain patients “sometimes”. That’s the only referral I was able to get, no other doctor wanted to deal with me! Two of the best chronic pain clinics in Toronto (one being the BEST in Canada!) had both turned down my referral, because they did not want to deal with a patient “addicted” to Fentanyl. Thanks a bunch guys! But my doctor, regardless of what his specialty is, is a kind man and seemed to understand me and he listened to me, for a change. He knew right away after to speaking with me and my husband that I have never abused my medication or was ever at risk of that. I have learned to bring my husband along to new doctor appointments, because he offers more legitimacy; like I’m not hiding anything. Its so dumb, yet necessary. So he called me early Saturday morning and had me meet him at his methadone clinic. He saw the condition I was in, and decided to go a different route, which meant that he was going to stop the detox and start the Suboxone with an additional med Naloxone that would deal with the horrendous withdrawal. I was to go back home, take the patch off, wait a couple of hours and then start the Suboxone. I was to take 2 tablets, wait an hour, take another dose, and see how I was feeling, and email /call the doctor and report how I was feeling. He also gave me a chart called a “COWS” (Clinical Opiate Withdrawal Scale) to document how I was feeling so the doctor could gage my level of withdrawal. Then I was to take up to 6 tablets in a 3-hour time period, dissolved under the tongue, but the doc didn’t think I would need the whole box and that I would start to feel better after 2-3 doses. I take off the patch, take the first dose, just as the withdrawal symptoms start again and waited an hour. No improvement. I took the 2nd dose and right away I was all foamy in the mouth. I thought it was just a reaction to the dissolving tablet. About 10 minutes after that, I had the most severe stomach cramping (worse than labour pains!) that I couldn’t get out of bed all the way and made it halfway to the commode before my bowels EXPLODED! No exaggeration here! I was so embarrassed and crying so hard because I didn’t want my husband to know. So I tried to clean myself up (thank goodness I am a small woman of 98 lbs!) and on the

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    • justine21487

      way to the bathroom in my wheelchair, I start to vomit so violently, I can’t do anything except throw up all over the floor while I holding a bucket filled with my own excrement in my lap, praying my husband doesn’t hear me! Thankfully, my prayers were not answered and my husband hears me and comes running to my side to help me to the toilet. I don’t know where the vomit came from because there was nothing in my stomach, since I hadn’t eaten for 3 days! When I say violent diarrhea and vomiting, it was nothing that I have never experienced in my life!! I wanted to die! I finally get back in bed after I start vomiting blood and there is a good amount of blood in my stool (I may have ripped a hole in my esophagus and damaged my bowels) I start to have tremors again but this time they were way worse! Then I began to have violent convulsions! I began to scream every time it happened about once every 3 minutes. I think I know what it feels like to be electrocuted, but from the inside out). I couldn’t control any part of my body. All I could do was scream. My brain had stopped working. I screamed for my husband to call an ambulance. The EMS came after a time because the dispatch had told them it was a possible drug overdose and/or DT (I came to know this later) so they were in no hurry to arrive. When they did, they acted like it was no big deal and ignored my convulsing and screams because they suspected that I was putting on a show to get drugs from the hospital. They ignored my husband who was trying to explain about the medical detox and show them the paperwork from the doctor and my other meds (Gabbapentin 1800 mgs per day, morphine prescribed during the first leg of the detox from the doc, tizanadine 4 mgs). They gave me a shot of Gravol, which felt like a lightening strike to my arm and caused me to scream even more. Once in the ambulance I am begging them to help, begging them to kill me, begging as to when the Gravol will start working because I had already filled one sick bag in the ambulance. They didn’t care! The EMS guy in the back with me kept asking me to spell Suboxone because he had no idea what it was and wanted to Google it. Omg. We finally get to the hospital and all the EMS guys kept saying is that I was taking Suboxone for Fentanyl addiction…no, no, no, that’s not it at all!! The stupid nurse kept asking “how do you spell it?” as she was typing on the computer, EMS guy kept saying “Sup-Lox-Own” and she was like “I can’t find it here”, indicating that it wasn’t really that urgent or important, since I was just a drug addict anyway, therefore, not deserving of medical attention. I was still on the stretcher, in the hallway of the ER, writhing in pain, drenched in sweat, convulsing, wishing for death, that all I could do that brought only an smidge of relief was to smash my head against the wall! I think I was really trying to knock myself unconscious, because everything I was feeling was the very epitome of any pain, even the horrendous pain that almost gave me a stroke post-op of my amputation. NOBODY in that ER (which was in the SAME hospital that I had my amputation in) gave a flying fig about what was happening to me, because all anyone kept saying was “oh that’s just a substance abuse patient in bay 7” whenever someone else inquired about the woman screaming in the ER. How did I get lumped in with that group??? When did I become a drug addict/substance abuser/ idiot/not worthy of care or treatment??? I didn’t understand what I was hearing. I was still vomiting violently. The only good thing was that the diarrhea had stopped, for some unknown reason. My husband arrives and he begins the pointless task of explaining about my amputations, the reasons for the detox, my struggle with that, the other medications I was on and why; and the ER doc basically holds up his hand to stop my husband from talking and says “there isn’t a lot we can do here…” and walks out! Two nurses show up, and without taking any blood, doing any other standard tests, or even asking me any questions (and maybe this is protocol for a drug detox patient?) give me an IV which felt like a knife slitting open my arm, and I immediately tried to rip it out of my arm. It was only then, when the one nurse, who was only slightly less harsh, stated that the IV was the only way to give me a dose of Valium that should help, did I allow them to reinsert the IV. I had to hold myself so still and my husband also held me down, in order for the IV to go in. The dose goes in and now the two nurses try to administer an

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    • justine21487
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    • justine21487

      EEG, but none of the sticky attachments would stick to my sweat slick skin and I am still having convulsions, so they could not get a reading of my blood pressure. They still think I am putting on a great show at this point. Who the hell would be able to keep that up (the convulsions, the vomiting, the screaming, the agony, etc.) for 3 hours straight???!!! When I tell you that in NO WAY am I exaggerating what happened to me. I have absolutely NO REASON to do so. My only motivation to share this publically is so that anyone else who may be going through this horrible experience with this drug, or has gone through a similar experience, can just know that they are not the only one who has gone through something like this. So the Valium does absolutely nothing for me. The ER doc comes back and gets in my face as I am still writhing and twisting all over the bed (and I kept trying to shimmy my body to the end of the bed…remember I am legless, so that I could perhaps fling myself to the floor, because I figured hitting the floor would feel so much better and that the floor would be cold, which would also feel so much better. But they kept stopping me from flying off the bed, likely because me falling out of bed would make them liable for any injury I might have sustained), so the doc says to me “What do you want to do? I can give you something to help like Morphine, but then you will be back at step one of this thing. Or you can just wait this out and finish detoxing…” I beg him, through clenched teeth, to please make this STOP! He’s like “ok, fine, whatever you want.” And leaves! A nurse comes by an hour or so later and hands me a morphine tablet to swallow (I guess they forgot about all the vomiting!) I tried to take it and finally was able to force it down, only to then learn (after another half hour passes and I question why nothing was helping) that the morphine tab was 5 mgs! For pete’s sake, I had 50 mgs of morphine at home! What the hell was 5 mgs going to do?? My body was so sore and so much pain had torn through me that I thought I might just pass out from sheer exhaustion. No such luck. I am still screaming and I have just about lost my voice by now, when the nurse that was p*ssed with me because she couldn’t get my BP or the EEG she so desperately needed to take, just so that too, could to be ignored, approached my husband and said “oh my, I just looked up your wife’s file on the system, and I can’t believe how much she has gone through!” Then she asks if I have any Fentanyl patches at home and I tell her yes, I have 15 patches. She tells my husband to go home and get one, bring it back and apply it. This is the only thing that will really help with the withdrawal (I can’t believe that what I went through is classified as “withdrawal” …it just sounds too benign of a description!). So My husband does just that. Once the patch is back on and about an hour has passed, the convulsions stop and are now just tremors again. I am no longer screaming, but the pain is there, but just not anywhere near what it was before. Can you be thankful for pain that would just blow your mind over pain that feels like you’ll die any second? Well I was thankful. I was thankful for anything that was an ounce less than the agony I was experiencing before. So the ER doc comes back and in a snotty, little tone, that clearly conveyed what a waste of time I was, asks “So what do you want to do? There isn’t anything else we can do for you, so you might as well go home.” I didn’t look at him. I said nothing to him. I turn to my husband and whisper “please take me home. They want the ER bed. I will be fine.” So that’s what we did. I went home. I was by then so cold, my skin was like ice and my stumps just ached from being cold, and that pain compounded the regular pain I already experience. But whatever. I crawled into my bed, wrapped myself in the duvet and fell asleep…finally! I slept about two hours until my 5-year-old crawled in bed with me to watch cartoons and cuddle. By then I was feeling slightly better and didn’t care about sleep…just having that warm, sweet smelling little girl curled up on my lap was the best thing ever at that moment. So to wrap up this very LONG story, my doctor had been emailing me all the previous day and up to 2am that night, trying to find out what had happened to me. When I spoke to him early on Sunday morning, he was appalled and also not surprised that I was treated like a “drug addict” and he was afraid of that. He said that Suboxone clearly was not the drug for me and that plan was out the window. I told him,

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    • justine21487

      Sorry Guys…the site won’t let me post my VERY long story. I have been trying to post all day, without any success. I am tired now, and even though I was trying to post in 3 reply blocks, twice it has been blocked for moderation. Perhaps I should start a new thread? Any thoughts? I would really like to just post the story in one post, so it makes sense and is not fragmented.

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    • leigh65923 justine21487

      Hi Justine, I have the same problems with the site.  About half of the replies I try to post actually get posted, it is a very frustrating site.  Not sure if it because it is from the UK or not.  Hey, you might try posting in small segments, we will understand you cool  (I think anyway)  Better to post than to be frustrated!  You might be trying to say something that someone really, really needs to hear.  I say go for it, although I can relate, for sure, sometimes I have to wait more than 60 seconds to see I mispelled a word,  and  the site jumps all around, changing from big font to tiny and back again.  Drives me batty!!!  Leigh

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    • leigh65923 justine21487

      Oh Justine, so sorry sorry ssssversssssorryee (there that is what this site does, lol) So sorry for my stoooopid earlier reply in the face of what I just read from you.  I really should read repliesER  from the top and not scan from the bottom, duh.  What an incredible nightmare you have had, that is unspeakable and exactly what I am afraid will happen to me.  You poor thing, the injustice makes my teeth curl.  Yep,  when you really need help, that is when the ER will let you down.  I am gonna try to send you a private message so that we can email, if you would like cuz this site is making me nuttty.  I hhope your experience can somehow help others.  Leigh

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    • justine21487 leigh65923

      (here is the conclusion of the VERY LONG post that I wasn’t able to post before. I hope this makes sense…) I told him, under no circumstances would I ever put myself through another detox, or even consider stopping the Fentanyl unless I am put into a medically induced coma in a hospital under the care of doctors that specialize in this kind of thing…and he completely agreed with me. He gave me a prescription for a month’s worth of Fentanyl 100 mcgs, and said he would need to do some consulting with other colleagues of his, being that my case is so very unique and complicated. Also, my doctor suspected that I became so sick so quickly, because of what may have been ”Serotonin Syndrome” (too much serotonin production in the body at one time), combined with a Sickle Cell episode (I have the sickle cell “trait” that had manifested when I was so sick prior to my amputation. I do not have Sickle Cell Anemia). So ultimately, I am back at square one. No real plan. No real solution. Just a lot of brand new battle scars, on top of the ones I already have, and traumatization for me and my husband (can you imagine what it must have been like for him to watch me go through all that and be unable to do anything to help or stop it??!!). So I don’t know what the next steps are, but I can only hope for the best. I will keep you posted if you want. And Leigh, feel free to email me if you want (I know how slow this site is…I typed this all out in MS Word and copied and pasted it here instead!) If you managed to get through all this, thanks for listening…

      Justine

       

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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    • leigh65923 justine21487

      Hey Justine

      Now why on earth didn’t I think of copying and pasting from Word?  Oh duh, I could get so many swear words back if I had thought of that.  But doing it now, silly ol’ me.  I can only guess at the trauma you went through, and it certainly would make one a little “gun shy”.  I have shared your story with many other folks (just talking to them, no details, I respect everyone's anonymity)  Your story is the nightmare I am so very afraid of, being treated like some damn drug seeker/junkie, with no respect and no help whatsoever.  I have had some convulsions trying to stop fentanyl, and it scares me to death, I live alone, for one thing.  And, to tell you the truth, going in to the hospital and being put into a coma sounds a trifle dangerous to me.  The only folks that will do it where I live are drug rehab clinics and I am not going to let those ‘bottom of the food chain as far as medical treatment’ people get ahold of me with a coma in mind. I now have a new referral to a new new pain management clinic, and I am hoping that they will take over for me, and help me step down from the fentanyl.  I have been told going down 12.5 mcg every two months is fairly do-able, so I would like to try that.  Even that sounds like a big hurdle, but I am determined to somehow get off the fentanyl rollercoaster.  Day 1 is great, Day 2 is OK, and Day 3 I am so tired I can hardly keep my eyes open, my nose is running and I am yawning, looking for all the world like a heroin junkie.  I don’t even know now if the fentanyl ever really helped with the pain.  I don’t put a patch on for pain, I put it on to keep the withdrawals away, and that is one sad situation, but I know most people on this site will agree 100% with that statement.  The pain clinic I was going to for 3 years “fired” me as a patient because I had the highest “morphine-equivalent” dose of their patient load because of the patch.  I had been so very careful to be so compliant with every little thing with them, because once you get a bad name, you are sunk, and they gave me a bad name to protect their own damn asses.  Grrr…

      Justine, you keep in touch and let us all know how you are doing.  You fought a terrible battle with the monsters of medical care, and I am not surprised you have a little PTSD from your experience.  NO ONE should have to go through that because they are taking a drug that has been prescribed to them.  It is unspeakable.

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    • melissa7471 leigh65923

      Leigh, I haven't started my withdrawal journey yet, (start in Oct), but I want you to know how much of an encouragement you are to me and I'm sure, many others. I look for your posts every time I log on. I really, really hope to have you in my corner when I start detox. I have a feeling I'm going to need every support system I can find. But I just wanted to thank you for being such a champion of all the folks trying to beat this terrible drug.

      Peace,

      Melissa

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    • kitlynn83289 acidjazzok

      For what kind of pain you had that your Dr prescribe you 200mcg of Fentanyl & 4 of 60mg ms contin? and now what you use to control the pain? Or how you control the pain?

      My boyfriend have 200mcg Fentenyl as you had before for 10 yrs (opiod for 27 yrs) for his spinal cord injure.  He want to go to Arizona to detox, I afraid that he may die in an instant since the pain too great will stop his heart!

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    • Kris69 justine21487

      Hello Justine:

      Your story touched my heart. I hope this note finds you in a better state than 3 months ago.

      Your GP in Toronto, and whoever else who think they're covering their asses at the price of your well being, should be reported to the college of physicians & surgeons. Their ethics are in big question here.

      As Canadians we're entitled to living in pain free existence, how dare any doctor put you through this.

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    • amber32533 justine21487

      Justine,

      What you experienced after taking the suboxone is called post acute withdrawal. Ive been there myself amd know you are not exaggerating. This happens when you take suboxone or vivitrol while you still have high levels of opiods in your body. Im shocked that your dr didnt know this would happen! Suboxone and the like essentially rip all opiates from the receptors in your brain and puts itself on the receptors. So the withdrawal you feel is much more extreme than goimg cold turkey and your body gradually lowering its levels of the drug. If you want to use suboxone and not go through PAWS, you have to go cold turkey for at least a couple days and get it out of your system. God help us all. This is a terrible drug.

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    • billytom leigh65923

      Hi

      i am on for 19 years  it has distroyed me i took my self off cold yurkey at first almosy died then i went of 50mg then to non i am now at my end i was put on after i broke my neck and at the same time fighting cancer 

      i feel worthless good for nothing i am 57 years old and not sure how much longer i can go on all i want is to not wake up i have to clean cook take care of two cats who are sick take care of a sick husband 

      how can i do all this and feel as sick as i am 

      please can someone help me ?? my brother started to do the same and hung himeselg last year 

      i am so sick and sad my right side is pins and neddles i have yet to see anyone have numbness or pins and beddles my lips go numb pins and neddles in my tonge always clod and always in pain 

      i use to love life all i wanted to so was live now all i want is to die 

      please can anyone help how do i stope this feeling it is so so bad 

      i am sorry to all who are going though this may god help us all 

      i will pray for everyone and if i make it i will fight hard so no one will ever go though this with out help 

      god bless you all 

      please forgive my tyoeing i am so out of it 

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    • Pointer99 billytom

      Hello billytom,

      First of all, I may sound like I'm repeating myself as I say this often in cases like you, but....19 years is a heck of long run of use to come off the patches. Can you give some background?

      Why are you coming off? Is it through choice, or are you forced to, or other reason?

      What was the time-span involved? I mean, from your usual dosage, you cut down by a half. Then for how many days/weeks did you go, before cutting down again by half, etc?? This is really important, because, (especially without the help of some short-term substitute, like another weaker opiate or a benzo just for a while) that is a very steep reduction. After 19 years, many people cut down at much more gradual pace.

      The short answer to your main question is, YES, virtually everyone gets out alive ( there are a few reported cases of tragic deaths, but I don't know the proportion. I'm pretty sure it is very, very low.) I, like many others I'm sure will agree, OFTEN wanted to die while coming off, or even just if I run out, or ran low, for some reason. But it is so important to hang in there and see it through. It DOES get better. If you relent, and put a patch back on, you may have come a long way for nothing! You may even be near the end of the withdrawal, and put yourself back to step one! That's  why it's important to know how long you've been doing this.

      As a minimum, follow the basics that get repeated over and over here : stay hydrated!! Many people find cola and other fizzy drinks are best as the sugar helps. Try some excercise, no matter how light. Try and distract yourself with funny books, movies etc. And perhaps most important, have someone with you, through this. If not someone physically there, then keep posting these forums. Post updates, questions, anything. Many people here will reply to try and help. And if things are intolerable, or you think you are really, very unwell then always consider the emergency room.

      I hope this helps even a little! Please post again, to update, and say how you're doing!

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  • emma53048 harvey81891

    HELP!! Day 8 of fentanyl 50mcg withdrawal and I'm still climbing the walls!

    Was on tramadol (100mg), pregabalin (600mg) and the fentanyl for 5.5 years. Pain doctor decided I was suffering hyperalgesia and so wanted me off all the medication.

    In replacement of these she gave me 40mg zormorph morning/night and oramorph for breakthrough pain and withdrawal.

    The last couple of days I've had a couple of hours where I've felt 'normal' but my arms and legs are so restless, twitchy and electric shock type pains going on!

    Had no oramorph for the last 2 days as I'm frightened of becoming addicted to that too, tonight, I have had a daily allowance within 2 hours because I can't cope!

    Do I go back to my consultant or push through this with the hope it'll get easier?!

    Any advice highly appreciated,

    Emx

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    • leigh65923 emma53048

      Emms, you do what you think is best for you.  If you think you are on the easy side of the withdrawal, then go for it, but make sure you are given enough drugs to keep you out of the emergency room with the withdrawal symptoms.  It is a very hard drug to come off, as all of us here will attest to.  It is the hardest thing I have ever tried to do, and wishing won't help a thing, but I wish like heck I had never started the drug over 15 years ago.  The withdrawal symptoms I have are just awful awful leg cramps that are just from hell, and they scare me so much, I have been up all night with them before screaming until I had no voice left.  I am glad you are doing this with medical supervision.

      Please stay in touch, you are in the right place with people who care and have gone thru or are going thru the same thing you are, and you can help every one of us with your experience.  We need to stick together here, we are the face of fentanyl withdrawal and I hope someone is paying attention to how very hard it is.  People have died trying to get off of it on their own.  I am sure I will need to be hospitalized to completely come off.  I have gone thru valium and vicoden withdrawal and they were a walk in the park compared to fentanyl, because of the physical symptoms that your body displays when the dose is lowered.  I have gone so far as to put an old patch on my hand to rush the drug into my system when withdrawal starts. I would NEVER suggest to do this with a fresh patch, as you can easily fall asleep and never wake up.  Perhaps I should never have mentioned this method.  I have kept just about every patch I have taken off over the years just because I have always been so afraid of the withdrawal after I experienced it the first time, when I had first started the patch, I decided I did not like how I was acting, I was alone, camping in the mountains, and that is the night I screamed, my legs were cramping so badly, I cannot fully do it justice in words.  I slapped a patch back on, giving up, and here I am 15 years later.  Actually one of the reasons I stayed on the patch after that experience was that my doc was so convinced that the patch was the answer  to my neurogenic pain in my legs due to MS.  I know at the time he had the best of intentions and I don't believe anyone knew at that time how hard it was to stop the patch.  All the best to you, please stay in touch and let us all know how you are doing.

      Leigh

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    • Kimmi0427 leigh65923

      Hi Leigh! Once again, great advice, as always in theae rooms.

      Something you said speaks to what Im trying to find out. You mentioned "starting withdrawals after 'the first time you STARTED the patch". Im trying to find out if after ONLY 1 month on the patch, then stopping, is enough to have bad withdrawals?

      Im very aware im at a huge "life decision turning point" . Iv just had my 1st referral from my Neuro & GP, to a pain mngmt Dr. to possibly see about getting on the Fentynal patch. Im VERY aware of what this can/will mean for me! Although my justification is, I want to have (& need) the CONTINUOUSE pain relief, compared to taking 4 Hydro 10's a day. (Neck problems) I am SOO curiouse about this patch stuff and LONG for being able to not have excruciating pain the minute a pill wears off! However, that being said, we are a 12 step family......iv got a daughter in Recovery and Im a Alanon momma. So im hugely aware plus iv gone thru opiate withdrawals from Hydros. SOO, I am believing everyone here that says Fent (i can NOT spell that atm) is the worst with that.

      My question is.......do you think after just 1 nonth of me using one will create this Hell yall speak of, if discontinued? Even stepping down to lower doseage, etc. Im sure your thinking along with myself....yea right, sheel only use it for a month!Trust me, I know! The reason i say this......i have very high tolerance. Also Ive tryed Oxys, over my Hydrocodones & found it didnt help as well as Hydros, oddly, but thats my personal opinion. Of course my Hydros dont take away the pain really, but im in so much pain now, iv GOT to decide......do I want to do the Fentynal roller coaster of life, or make the decision NOW, to not even TRY it! Im very aware if I do, im looking at hospitalization to get off it at some point in my life IF i ever DO!

      Which goes to my original question......when you said, your withdrawal symptoms in the beginning, did you mean, in between patches........its that bad??? Ugh

      Ty! And sorry for rambling, Im mobile typing this up.

      Thoughts? Comments?

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    • Kris69 Kimmi0427

      Hello Kimmi:

      Yes, during the time I took fentanyl (4 yrs), I went through withdrawal between patches far more often than not. Trouble is, I had no idea that is what was happening until I began my retreat downward from 100mcg/hr to 12mcg/hr patches. I thought it was par for the course of being on fentanyl. It's been 2-3 wks since the last patch was removed and I am still in full blown withdrawal. I will say that fentanyl did wonders for my pain, and was the only thing that seemed to work for my neck injury. The cost was just too high. I pushed away everyone who cared about me, became a totally different person, gained a ton of weight, and became a lazy couch potato. I used to be the exact opposite. I don't believe any other pain med can be so life altering. Withdrawals definitely happen if you're not right on the hr. with changing the patch, and if one out of the hundreds of variables are not met, like timing, where you put it, if your skin is completely clean, etc. and the withdrawals are just as bad over the 4 yr. journey as they were/are when i quit all together. Remember, it is 100x more powerful than heroin, and although I've never done it, I know that old users are only using To avoid withdrawals. Fentanyl has proven to me that there are definitely drugs out there I cannot take or handle for pain. I have dropped 5 lbs just by my body detoxing, and am thinking clearly now that the fog has lifted a little - unfortunately it's made it all the more clear that at least 4 yrs of my life seem unaccounted for. I hope everything has worked out for you, and that you have found pain relief that works well for you. What works for one may not work for another. Take care!

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    • billytom leigh65923

      Hi

      after 19 years i am fighting to get off with no paon pills nothbing to help me at all i started cold turkey off 100 mg almost died no one told me how had it would be my brother did not make it he hung himself last year at first i could not understand why he took his life but now i know why i am at my end i though as days go by i would feel better but no i am still as sick now as when i started to get off 

      dose it get better? this is not life i feel like a zombie all i think about is  finging a way out to end this nightmare but i dont want to burn in hell 

      i am so so sorry for all who have to live this hell may god help us all 

      dose anyone have pins and needles and feelo so so cold forget things not know if your coming or going ?? 

      if anyone can help please do after 19 years of 100mg to nothing not even  anytrhing for pain i have bars plates screws in my neck and spine and was told i needed pain patch 24/7 now i went from 24/7 patch to nothing at all i feel after 19 years i will never be free of this poison  i feel i only have one way out :}}} 

      please forgive my typeing i am out of it 

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    • Pointer99 billytom

      Hello billytom,

      First of all, I may sound like I'm repeating myself as I say this often in cases like you, but....19 years is a heck of long run of use to come off the patches. Can you give some background?

      Why are you coming off? Is it through choice, or are you forced to, or other reason?

      What was the time-span involved? I mean, from your usual dosage, you cut down by a half. Then for how many days/weeks did you go, before cutting down again by half, etc?? This is really important, because, (especially without the help of some short-term substitute, like another weaker opiate or a benzo just for a while) that is a very steep reduction. After 19 years, many people cut down at much more gradual pace.

      The short answer to your main question is, YES, virtually everyone gets out alive ( there are a few reported cases of tragic deaths, but I don't know the proportion. I'm pretty sure it is very, very low.) I, like many others I'm sure will agree, OFTEN wanted to die while coming off, or even just if I run out, or ran low, for some reason. But it is so important to hang in there and see it through. It DOES get better. If you relent, and put a patch back on, you may have come a long way for nothing! You may even be near the end of the withdrawal, and put yourself back to step one! That's  why it's important to know how long you've been doing this.

      As a minimum, follow the basics that get repeated over and over here : stay hydrated!! Many people find cola and other fizzy drinks are best as the sugar helps. Try some excercise, no matter how light. Try and distract yourself with funny books, movies etc. And perhaps most important, have someone with you, through this. If not someone physically there, then keep posting these forums. Post updates, questions, anything. Many people here will reply to try and help. And if things are intolerable, or you think you are really, very unwell then always consider the emergency room.

      I hope this helps even a little! Please post again, to update, and say how you're doing!

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    • carol77581 leigh65923

      Hi Leigh

      I know your post is older but I'm 2 weeks off 50 fentanyl cold turkey and my biggest complaint is the leg pains. The initial back pain that sent me to the patch is very tolerable. These nasty creepy painful restless legs are the worse. I keep hoping one day will be better. I'm taking vicoprofen for the leg pains when is was prescribed for breakthroughs back pain while on the patch. I feel like I have had the flu for a week but I got the symptoms right after a massage. Maybe that wasn't a bright move sending all the normal toxins through my body. I wish I had a definite date when I would feel normal. My head is always foggy like a head cold.

      Support and people who have been through this is the best therapy. Wish I could find a live support group. My family doesn't really get the pain and I know they are sick of hearing me talk about my research and feelings

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  • acidjazzok harvey81891

    keep trying to kick it, i was on 2 of the 100 microgram patches and 240 mg of ms contin for 12 years and got off it by getting the dry patches, not the liquid type, and trimming a little off the edge each time till i got off it, i was puking sick 24 calender months diong this but it was worth it and i would not do it again

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  • emma53048 harvey81891

    Hi everyone, hope your all doing ok?

    So here's where I'm at...

    I am free of fentanyl 😊😊😊 however, I went 9 days without oramorph, I had no nasty leg and arm cramps, the sweats stopped although I was still very fatigued. Suffered dizzy spells everytime I stood up? Not sure what caused that!

    So I plodded along, then last night I started with a pounding headache, sweats, shivers, legs and feet with the most unbearable cramps and nerve pain!! I ignored it and had a nap on the sofa, woke up hours later to my partner begging me to have a little oramorph to take away the pain! He said I was fighting, shouting out in my sleep in pain, he said I was squeezing my legs and feet! I honestly felt like I'd gone back to day one! So I had some oramorph and took myself to bed.

    I've woken up today feeling fantastic 😊 Then about the same time as last night, the pain has started again?!

    Am I still going through withdrawal? I've been and brought some calms and I'm considering taking one in the evening to see if it chills me out a little.

    Thank you so much for everyone sharing their journeys, it's nice to know we're not alone! 😊

    Emx

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    • leigh65923 emma53048

      Wow, Emma, this sounds really strange, it sure sounds like it must be some kind of strange kick-back withdrawal, but I am certainly no expert on it.  I hope someone with some experience answers you.  Sounds like you are doing the right thing by taking the oramorph when you need it, and having things on hand just in case.  Please stay in touch, you are awesome!!!  Leigh

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  • deb73201 harvey81891

    Hi

    as you all know I have been coming off the Fent patch from down to 25 . I have been so sick on the 25 so last night I took it off . I am done with it yes I have the fen flu . It's was faster then I really should have done it . Not sleeping sick sick sick . Good new down 10 pounds . I just can't wait to feel better again this drug is the worst . 

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  • Macdoctor56 harvey81891

    I was on 75mcg patch for 3 months and I had enough, I told my doctor I wanted off this crap. I bumped down to the 50mcg patch the next day and down to 25mcg 6 days later, I was going to bump down slow because of all the horror stories I read online about the withdrawals but said screw it. Yesterday I cut my 12.5mcg patch in half and I'm putting the other half on tomorrow then I'm done. I've had some withdrawals but nothing drastic enough to make me slow down my pace of getting off. I don't take any other drugs for pain or withdrawals except ibuprofen, I just do other things to occupy my mind and tell myself nothing is stronger than me and I control my life.

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    • Macdoctor56

      I forgot to add my doctor gave me Percocet for breakthrough pain but I've never taken them I just stuck with the patches. Don't give up your fight no matter how hard it gets, quit making the doctors and drug companies rich stand strong you can beat this!!!

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  • Kimmi0427 harvey81891

    Ty Harvey! Youve said EXACTLY what I needed to hear. Im on the fence with my 1st apmt coming up, switching from my GP and Neuro, to a pain mngmt Dr. I wanted to TRY the patch to get the pain relief continuously, just for one month, as Iv not been able to lie in bed and sleep at night. (Neck). So I think youve scared me into not even trying it. I currently take 3 hydro 10's, a day so thats what Id be going up from. Can you tell me if the withdrawals from the patch are bad, even after one month?????

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    • harvey81891 Kimmi0427

      Kimmi

      When I read the rather incoherant nature of my original post I realise i still was not quite myself after many weeks. The truth is that the really brutal withdrawal is about 48hours. Zero opiates.. full on noradrenaline (bad) and after this your body will start to wake its natural hormone production again. This is hell , so bad you will not remember most of it... on day 4 I got into my car and crashed it in the first 100 yards narrowly escaping my death and gof forbid anyone elses. I was out of it. After a week its bearable but cravings are massive if only not to be so tired. This is better after a couple of months and i would say it takes a full year to feel yourself again. This is my experience.

      After 2 years I am in the gym 5 days a week and as fit as a butchers dog.

      Hope this helps

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  • Kimmi0427 harvey81891

    Hi Harvey,

    Kim again here. Im new and not sure how to post a question on this thread besides just replying to a comment.

    Question.......isnt there other medications for pain, in the form of a patch, that doesnt ruin your life like Fent??? When i broached the subject of a patch to my GP, he said, what do you want, Fentynal? Im thinking, I dont know?

    Kim in Arkansas (US)

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    • orb Kimmi0427

      There ARE indeed other meds, you just have to find one that works best for you.. I was on Fentanly for a good while but got off it after a few months.. Inititally I went back to my max dose Dihydrocodine. However it wasnt wasnt strong enough.. So now I'm on Marol (Tramadol) & Morphine for breakthrough pain.

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    • LittleMissHope orb

      Hi, can I ask some advice please... I don't know what to do... I was on a lot of meds years ago due to my spinal injury and syringomyelia (broke back in 1991)- i managed to wean myself off 400mg tramadol and halved my fentanyl patch from 25mcg to 12mcg (I'm also taking gabapentin, coproximal, and robaxin)... Well I forgot to replace my patch a few days ago but only realised a few hours ago... I though the headaches, extreme fatigue, dry eyes, nausea and excruciating pain was due to the fact I doing a lot of studying at the moment. It dauned on me today it might be withdrawal from the patch. So now I have a dilemma... Do I put another patch on (until I have a period where I can deal with the withdrawal properly - I have a wedding cake to make and a considerable amount of studying before thyrs Eve)... Or do I take a tramadol again? I've been off tramadol about 2 years and went through cold turkey gradually weaning off it, and the same when I halved fentanyl about 2 yrs ago. I'm scared I will have to go through withdrawals again like cold turkey from even taking tramadol short term. But im also happy to have come off (albeit accidentally) the fentanyl... But I feel so dizzy and lethargic and exhausted and in excruciating pain... I need to take something! Help... Amy advice I'd be so appreciative x

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    • LittleMissHope

      Ps I've been topping up meds overbyheast few days with dihydrocodene- from reading posts on here, this is what might have masked some of the withdrawal symptoms (sweats, cold turkey shivers etc)... But I just didn't realise it was needed due to me not having replaced my patch- I actually can't believe I forgot to put it on again!

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    • orb LittleMissHope

      Dihydrocodeine (DHC) definately lessons the withdrawl symptoms of Fentanyl. I was on DHC for many years before being prescribed Fentanyl.

      During the transfer stage over to 25mcg's of Fentanyl from Dihydrocodeine the withdrawls symptoms were terrible, almost as bad as coming off Fentanyl. IMO I should have been put straight onto 50mcg Fentanyl.

      Anyway after about 6 months on Fentanyl I wanted to come off the it and go back to onto Dihydrocodeine as the 100mcg Fentanyl were not working.. The transfer back to max daily dose of DHC was amazing, hardly any withdrawls symptoms at all.

      I'm now on Max daily dose Marol (Tramadol) and Morphine which for me work a little better than Fentanyl, however it still doesn't stop pain by any means, I don't think anything would appart from drip feed.

      I remember after I'd had major surgery for a pelvic bone tumour, lying there on a spinal anaesthetic drip.. With NO pain!.. In fact I couldn't feel my right leg at all, even though the right hip and buttox had more than a 1 foot long scar in it, which was full of staples eek

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    • JenJen101 Kimmi0427

      I've been on a Fentanyl patch for chronic pain for over 5 years now & it's changed my life for the better-believe it or not. I have Ehlers-Danlos syndrome, have had both knee caps removed, an artificial disc replacement in my neck, have extreme hypermobility, & dealt w/such debilitating pain in my hips, back, & knees that I pretty much had given up. But then my counselor brought up the idea of possibly talking to my Dr about trying out the patch. At the time I was taking MS-contin, Percocet, muscle relaxers, & other antidepressants/anxiety meds. I was even put on Dialodid at one point, which damn near killed me.

      I started w/a 75mch patch then up to a 100, where I've been ever since. No more popping a handful of pills 4-6x's a day, but most importantly no more non stop pain! I don't have to worry about setting alarms, & only deal w/having to take breakthrough pain meds. My patch is changed every 72hrs, & my hubby puts it on my back & makes sure it adheres by putting tape around the edges.

      The only major side effect I've had from it is horrible constipation. I recently have been put on Movantix for OIC, which honestly I had at least 10 years prior to ever being on the patch. It's helped me a lot, as well as taking additional stool softeners & increasing my water intake.

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  • Pman harvey81891

    I'm so glad I found this website.  I am a disabled vet and thought getting off 75mcg for a two month duration is hell.  I've been off for a month, taking 1/2-1 10-350 norco a day.  I feel like the flu. In addition I have ptsd from military and on a gamut of VA brain candy.  I've been through worse but this is hell. 

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  • Kris69 harvey81891

    Hello!

    It has been about 3wks since my last patch of fentanyl. I started coming down from 100mcg/hr. in May, by 12mcg/hr every 15 days, a slow weaning.

    But wow, the withdrawals just keep coming. Headache, blurred vision, cramping stomach, total lack of energy/motivation, feeling too cold or too hot, insomnia, severe depression, fevering, and just feeling rotten 24/7.

    I have Benedryl for the allergy symptoms like sneezing, gravol for nausea and help with insomnia, Tylenol for the burning pain that slowly creeped back in my injured neck & headache, ibprophen for aching, and gabapentin, Clonidine, Welbutrin & Celexa which are and were prescribed prior to opiates 8 yrs ago.

    I have two questions. 1. Any thoughts on an opioid free prescribed pain reliever that can keep pain at a minimal without popping pills all day? And 2. Is it normal to have umpteen normal bowel movements/day&night after fentanyl? I'm scared to go anywhere. I can't get thru a meal without being interrupted. It's so weird. I must have dropped 5lbs already, and gassy, cramps, really empty hungry feeling all the time. Is this normal!? If so,

    When will it END!!!!

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    • harvey81891 Kris69

      Kris 

      You are doing great, hang in there!!

      Yes this is all normal. Try and simplify your medication intake if possible and add back in if you really feel you miss anything. For pain consider aspirin with an anti inflammatory but do consult your doctor.

      5-HTP is an excellent supplement for helping the body create seratonin, a feel good hormone, be careful not to take too much as it is known to decrease effectiveness at high doses.

      The opiates slowed your digestive system to a snails pace and so the fact that you are going too often is just proof that you are healing. Try buscopan for some relief. It helped me.

      At this stage feeling rotten is a badge of honour, it is testament to your courage in finally making the jump and staying off. Wear it with pride as everyone here will be proud of you and take one day at a time. You will feel about 80% very soon and function quite normally.

      Harvey

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    • Kris69 harvey81891

      Hello Again!

      You mentioned that 5-HTP is an excellent supplement for helping the body create seratonin, a feel good hormone. 

      How is it administered?and could it possibly (hopefully) take the place of 450mg/day of Welbutrin, (I take a 300mg + 150mg pills-the max).

      My dream life would be to just stop taking everything and feel great. Imagine the freedom. I seriously have an apt. with my GP tomorrow, and I will ask about it. I am so done with pills, choking them down with drymouth every day. I have all kinds of biotene but it gets nasty after awhile too.  I feel like all I do is Bitch! Which is persisely why I avoid meeting people - all I'd have to introduce is pain. 

      I also have COPD (its nor severe) so getting going seems like hell for just not quite enough oxygen, so concentrating on my breathing sucks. Literally, hahahawink I quit smoking 4-5 yrs ago (30 yrs), and being ignorant to the fen flu, laying around like a dog, then my lungs were caked with phlem (I filled an empty yogurt container/3 days)That and fentanyl (and myself) probably caused the pneumonia, laying still. I was fading away, called a wonderful woman to watch my son, called 911 and they wheeled me away. For 5 days. It was all a big blur. I have at least 3 inhalers, but only use the emergency one before going out to walk around, and am my own worst enemy because the procrastination to be mobile has one time and time again. I think its time to look into this a litter closer and follow the rules. I will die if I do not pull my lazy ass off the couch and slowly bloom into the happy person I was meant to be.  I just wish I had a buddy to walk withsad 

      Im rambling now, but im really interested to know what is or if 

      you know anyone who has had 5-HTP ? is it a shot? I'll be seeing him (GP) tomorrow with my list in hand (hahahahasmile Thank you again for the correspondance. Im new to this and I dont want to get on  anyone's nerves, so next time it won't be a novel. Promisesmile

      ttyl take care, and please let me know how you're doing!!

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    • debraHa harvey81891

      My doctor is taking me off 25mcg every three daays cold turkey I have been on for about 10 months. What can I expect as far as withdrawels? Thanks in advance

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    • melissa7471 debraHa

      DebraHa-

      What mcg are you starting with?

      Restlessness, anxiety, nausea, diarrhea, vomiting, restless legs, etc.

      Is your dr educated specifically in detox?

      Let us know how it goes.

      Melissa

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    • patti2576 debraHa

      How many days are you without anything?  Did he give you anything at all for your pain? I am attempting to get off Fentanyl 50mcg, which I have been on for 14 years.  We are doing it very slowly, currently I am increasing the time period between patches. I have started every 72 hrs x 1 week, yesterday was my first 96 hrs and I have started having some nausea, stomach aches, diarrhea, very gasy, insomnia.  It comes in waves, so far it's not constant. He is a pain management doctor and very experienced in detox.  He told me what the plan is and said that I need to go as slowly as I feel comfortable doing.  If it gets too bad then go back to the last level until I feel I can procede again.  Because of the length of time I've been on it, it will take a longer period of time to detox from it.  He said that there is no way I won't have some withdrawal symptoms.

      Keep us updated on how you are doing and I will do the same.

      patti 

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    • Actiquser patti2576

      Hi Patti, Debra

      I came off Fentanyl 50mcg Patch after coming off Actic the oral from 10 a day to 4 then cold turkeyed . I waited till day 11 of stopping the Actiq then went 50mcg to 37.5 to 25 to 12.5 to nil every 72 hours over 12 days. It wasn't as bad as the oral fentanyl. What ever way you do it you'll get withdrawals. Consider the following

      Loperamide for the diarrheoa and stomach cramps take as many as required to stop it or you become dehydrated which is what gives headaches.

      Diazepam if required to help with anxiety help you forget but no more than 3 days after you stop.  Symptoms are worse by day 3 then dimminish.

      Frequent baths or showers for Sweating takes longer.

      Lots of vitamin and amino acid shakes.

      Warm wraps for the chills.

      Allow 3 days when you finnish to lie on the sofa /bed and watch commedy film to make you laugh and raise your endorphine level.

      Excercise daily again to get your own endorphines going.

      Be aware of mood changes I got tearfull a few times (not my normal)

      and angry at other times but the world will become a much brighter place so keep going,

      Pain levels initially go up "rebound effect" then level off.

      It is do able

      Best wishes to you both and lots of hugs

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    • Actiquser debraHa

      Hi Debra,

      That's how I did it . Worst withdrawals day 3 then it improves.

      I'm now day 30 still have difficulty sleeping and only occasional sweat now. See my reply below. Rebound pain has now settled down.

      Well Done !!! Lots of hugs xxx

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    • Pointer99 Actiquser

      Hi Actiquser,

      Very well said, nice post. Many people I have met or known, have been under the impression that withdrawing is something uncontrollable, unless other medication (or should I say, toxic chemicals) are involved to "help".

      Of course to a certain degree this is true, but as you say, the 'simple' things, which sound "silly and obvious" can be a huge help, like you say, watching a funny film that makes you laugh, exercising a bit (if not too painful) etc etc.

      One thing I would add: no matter how nice, kind and pleasant person you are, it may well be necessary to be SELFISH for a time, during your detox/weanin. By this I mean, warn those around you that you may have mood swings, be grumpy, tearful, no fun, seem uninterested and so on, during this time, but IT IS NOT YOUR FAULT. If someone near you, say, accidentally took a small overdose of Paracetamol and had terrible stomach pains and did not want to go into town with you, would you berate them and be angry? Of course not. You would understand and try to help, right? That's how I explained it.

      And showering. Again, tell those near you, but BE SELFISH. If you get the sweats and are soaking for however many days, then take 3 showers a day. Again, it is NOT your fault, and if this is what you have to do to successfully get off the patches, so be it.

      One last point. This is a bit controversial, and some people will disagree with me. But I read a study while still on the patches, claiming that consuming between 75 an 200 mg of caffeine per day, greatly helped people in chronic pain. If drunk alongside taking pain meds (even just paracetamol, if you are getting off the fentanyl) the apparent relief was much greater. For me this worked wonders, and for weeks after starting my detox, I would have a coffee or two from a certain well known, Seattle-based coffee shop. I know this sounds wrong, since withdrawing causes insomnia, spasms, anxiety etc., yet for me the study rang true and it was a huge help. Try it if you like coffee; what have you to lose?

      To everyone going tru this: Stay strong, it CAN be done.

      Mark.

       

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    • billytom Pointer99

      Yes  coffee all day long and music it helps a bit but not enough maybe because i am on it 19 years then nothing to help me between .This is the hardeast thing i ever had to do 

      i am broken  lost sad and in pain my brother told me not to get off  it was safter to stay on he started to get off the patch and lsot his fight he hung himself last year he said no one gets out alive he said even if you get clean a part of you will always be dead 

      is he right?? i am still fighting to feel better i wont give in no patch on me ever again even if it kills me 

      god bless you all may god helps us though this living hell 

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    • Pointer99 billytom

      Hello billytom,

      First of all, I may sound like I'm repeating myself as I say this often in cases like you, but....19 years is a heck of long run of use to come off the patches. Can you give some background?

      Why are you coming off? Is it through choice, or are you forced to, or other reason?

      What was the time-span involved? I mean, from your usual dosage, you cut down by a half. Then for how many days/weeks did you go, before cutting down again by half, etc?? This is really important, because, (especially without the help of some short-term substitute, like another weaker opiate or a benzo just for a while) that is a very steep reduction. After 19 years, many people cut down at much more gradual pace.

      The short answer to your main question is, YES, virtually everyone gets out alive ( there are a few reported cases of tragic deaths, but I don't know the proportion. I'm pretty sure it is very, very low.) I, like many others I'm sure will agree, OFTEN wanted to die while coming off, or even just if I run out, or ran low, for some reason. But it is so important to hang in there and see it through. It DOES get better. If you relent, and put a patch back on, you may have come a long way for nothing! You may even be near the end of the withdrawal, and put yourself back to step one! That's  why it's important to know how long you've been doing this.

      As a minimum, follow the basics that get repeated over and over here : stay hydrated!! Many people find cola and other fizzy drinks are best as the sugar helps. Try some excercise, no matter how light. Try and distract yourself with funny books, movies etc. And perhaps most important, have someone with you, through this. If not someone physically there, then keep posting these forums. Post updates, questions, anything. Many people here will reply to try and help. And if things are intolerable, or you think you are really, very unwell then always consider the emergency room.

      I hope this helps even a little! Please post again, to update, and say how you're doing!

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    • carol77581 Kris69

      I see your post is a few months old and hopefully your symptoms have gone away. I will say that since I stopped the patch I am more regular than ever which is a total turn around however I seem to be starving to the point of nausea. It reminds me of morning sickness. Positive I am not pregnant. I eat s lot of tums and pepto but it's getting a little better. Hope you have recovered and know I think this can be normal

      Carol

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  • Kris69 harvey81891

    harvey81891:

    Thankyou for your kind and inspiring words.  I Quit smoking, barely drink anymore, dumped all friends who drank to oblivion and used cocaine and street drugs to socialize, quit oxy's just before starting fentanyl, and now I've quit that too. Did this alone. My spouse cheated on me in 2006, we split after 10yrs, I continue to raise our son who is a millineum baby. He's 16 now. I am so proud of him. He has witnessed awful painful predicaments, and could have taken essily got into smoking, drinking, meth, pot, cocaine pills too of course. But he didnt do any of those things. He must take after a distant relative,lol.  School is not his cup of tea, so we argue in the mornings.Things are slowly becoming so clear - and somedays I feel I am brand new, looking at the big wide world for the first time. I need to learn to take the reins and thrive with life and enjoy it with no paralizing guilt or shame or evil  feelings of worthlessness and failure. Taking the reigns is so thrilling it scares me and warns me to stop. My body & brain will inform me when I'm ready to start a new life.... its been 2-3 wks being slowly weaned off the Fentanyl Patch after 4 years of it. Thank you for advice on treating and what to expect during withdrawal, info is so important to me & I don't feel completely alone with this harshness. I hope all is well with you, take care, ttyl.

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