Fentanyl Withdrawal Symptoms (Page 16)

I'm trying to wean myself off the Fentanyl patch. I went from 75 micro-gms to 50 now I'm on 25. Having a problem and not sure it is related to the decrease in the med. It's been 20 days on the 25 micro-gm and I'm going crazy. I need to keep rocking, moving in any way b/c my body is very restless. Is this a symptom of withdrawal and what do I do? I cannot take it any more.

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I have been taking Fentanyl 24 mcg and then it was upped to 50 mcg for about 3 years overall and am currently off the Fentanyl entirely but having what I assume are withdrawal symptoms. I also take about 3 Percocet daily, for probably almost 20 years. Reason is arthritis pain and wear and tear over the years. I am 70, so I think but am not positive that weaning off the Fentanyl is harder on me, since older people are more sensitive to drug levels. My doctor & I recently decided to discontinue the Fentanyl because it made me really dopey and out to lunch and couldn't get going in a.m. Yes, I know I am 70 but I am slim and active and ride my horse every day and do a lot of other physical work, and it's just in the last year or so that I feel like I cannot get myself going. So the doc and I decided to replace Fentanyl with Celebrex, which has worked well for me in the past. He had me start the Celebrex and on the same day go down from 50 mcg of Fentanyl to 25. I did that, as instructed for 6 days (two 25 mcg patches worth), and then stopped the Fentanyl entirely. I did not misunderstand this, as I checked with him several times if he wanted me to discontinue Fentanyl this quickly. I am continuing the Celebrex indefinitely, and that and the Percocet are keeping pain under fairly good control. But I couldn't sleep so doc prescribed Ambien, which was a disaster. My psychologist then recommended .5 mg Adavan before bed, have tried that for one night and it's better than the Ambien. However, it is now at least two weeks since this whole ordeal began and I still feel very weak, fatigued, at times dizzy enough that I know I can't drive the car let alone ride the horse, and I've been having diarrhea and shivers and twitchy legs. And perhaps the worst thing is that I still feel drugged and dopey and generally miserable. How long does anyone think this will continue? And is there anything else I can do about it? I do have 8 of the 25 mcg patches left, but it seems to me I should not go back to using them since they are the thing I'm trying to get away from. Any feedback will be greatly appreciated.

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Ihave been on 100mcg of fentanyl and reduced by 12.5, down to 88mcg. It's been 16 days and I am still having horrible withdrawal symptoms. Is this normal? My goal is to get off all fentanyl, going down 12.5 at a time. I've experienced almost every withdrawal symptom listed and my life has become a nitemare! Two years ago I was on 150mcgs of fentanyl and 35 to 50 mgs of oxycodone daily. I reduced the fentanyl from 150mcgs to 75 mcgs over a years time and in Feb. was raised back up to 100mcgs to help me get off the oxycodone. Now at 88mcgs and feel stuck. The withdrawal is so bad that I wonder if I can even get down to 50mcgs. I hate this drug and would like to put all the docs who have perscribed it on it themselves and try letting them see what it's like to withdraw! I would appreciate all imput! I have been on opoides for 14 years. Put on it for fibromyalgia. Evidently I am atypical and did not get into withdrawal symptoms for a week and them BAM it hit. Like I said earlier, its been 2 weeks and I'm still in withdrawal! If you can relate to me, please respond!

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RESPONSE TO LAST FEW POSTS:
All I can tell you Is I'm sorry. Weaning DID NOT WORK FOR ME. MY ADVICE/OPINION ONLY, First, you will STILL HAVE withdrawals for approximately 20-27 days AFTER TAKING OFF PATCH PERMANENTLY!! This is why I cold turkey'd the things. I couldn't wean, It was just as bad to wean as it was to QUIT!! for me! My advice is contact a rehab doc / center or if you have a good doc, which in the case of these patches seems to be non existent is to use the benzo's, i.e. valium, xanax, with doctors help and don't try to wean OR, have them switch you completely to a slow release tablet, then wean from tablet when patch it out of system. I did do switch once without much complication but then went back on patch and was on it for a couple more years before finally just stopping. I KNOW HOW HORRIBLE< TERRIBLE> AWFUL you all feel. It is INDESCRIBABLE and I agree with Sue, I would put all docs on it and make them get off, THEY DON'T GET IT, I was blessed enough to have access to rehab doctors advice and had friends who had been through it, what rehab docs know and do is VERY different from what your general doc tells you, I BELIEVE IT IS LACK OF UNDERSTANDING & just plain IGNORANCE about the PATCH and complications of it. Thats why the Pain Management Docs they have now have to go back for extra training on how to use the Suboxin and other type things but THEY do understand a LITTLE better the withdrawals and HOW BAD THEY REALLY ARE. The patch dosage stays in your system for 72 hrs AFTER removal, you don't even hit YOUR WORST withdrawals until at the 72 hr point, THEN you still have 5-7 days of HELL and up until day 20 of NO PATCH AT ALL did I feel like I was finally doing a little better. I KNOW THIS SOUNDS DISCOURAGING, IT WAS, I can tell you its WORTH IT TOTALLY when your off it!!! IF anyone wants more specific info, address me specifically, I FEEL FOR ALL OF YOU.

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Tessie, I do have some specific questions for you: how much were you on when you went off cold turkey and what are the slow release pills that you are talking about? Really appreciate your input and would like to hear more. Right now I'm at day 21 and still experiencing withdrawal and my doc doesn't understand why I'm having this much trouble just dropping 12mcg (which is 1/8 of what I was on). What do you know about Suboxone and is it easier to withdraw from?

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I still can't believe how many people are going through fentanyl withdrawl like I am ... this website is like a Godsend ... I'm not alone like I thought I was. I can't imagine just quitting cold turkey - man, that's gotta bite big time. I have 2 patches left (25 mcg) before my 2-month weaning is over. Hey, Sue K ... Tessie ... anybody else ... do you think I'll make it or should I ask my doc for a month's worth of 12 mcg and stretch them out - like make one patch last 4 days ... then 5 days ... etc etc. I'm not taking the withdrawl well at all. I can't even think about just stopping - boom - gone ... after the 2 patches I have left. The hydrocodone helps a little to calm the mega body twitches, especially on day 3 and I've been changing the patch on day 3 earlier & earlier just because I can't stand it. I can't wait until this whole nightmare is over ... it's time to wake up any time now.

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Reading these last few posts has been a huge help in understanding what's going on with my body. I am now on Day 25 of no Fentanyl, and thankfully feeling a lot better but still have major body twitches especially at bedtime, and even taking Adavan I wake up 5 or 6 times every night twitching and jerking around. Ugh. The major message I'm getting from most of you is that GPs like mine just don't know what they're doing in terms of weaning, and I'm not convinced that most pain specialists do, either. Tessie, your posts have been super informative, but I'd also like to know what you mean by a slow release pill. What type of medication in this pill? Also can anybody tell me whether my feeling of total exhaustion after minimal exertion is part of withdrawal? How long will I have to put up with this? I am running about half-speed in terms of what I can do in the course of a day, and needless to say my life is feeling more and more out of control. Does anyone have any suggestions? Thanks to all for the support and information, and if I can help anyone would be glad to ...especially if any of you are over 60 like me and also trying to cope with the aging process and figure out what is withdrawal and what is just getting older and creakier.

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3Day Rider - I believe your feeling of exhaustion etc is definitely connected to the withdrawl. I'm still using the patch going lower & lower on dosages. When I put on a new patch I do it at night. I wake up the next morning (day 1) with energy and can actually maneuver myself around well enough to do some chores. But ... by the time nighttime rolls around, still on day 1, the energy is all but gone and I live the next 2 days in Zombieville along w/ the body twitches, and the feeling of total anxiety (kind of like your heart falling if you can imagine that feeling - everyone has it at some point but this is like all the time). I'm lucky in that my pain mgmt doc is great. He's done everythng he can possibly do to get my back in workable order again and nothing has worked. When we decided he'd wean me off the patch I asked if he was giving up on me and his answer was no way ... we'll be connected at the hip for life ... he really is one of the good ones and I like the way he's weaning me off. I started w/ 12 mcg & went up to 75 ... so now I'm working my way back down the same ladder - hoping that when I get to 12s again I can stretch them out a little maybe 4 days ... then 5, etc and work it out of my system that way. Oh well ... we'll see what happens. I knew up front that the patches were addictive and that I'd need to prepare myself for the day that I'd start to get off them ... but wow ... I certainly didn't think it would be this rough. Take care all - we'll get through it.

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I'm going down 12mcg at a stretch. This first drop has about killed me and I have 5 more drops to go before I'm off. My body feels like pure hell and its hard to remember that I was happy before I started this. I keep being reminded it is a damn choice, I can stay on the fentynal or continue to go down. I've considered going on to suboxone but am afraid to because it doesn't handle pain at all. I too am over 60. I just have to think that even if this takes a year, in the whole scheme of things it's just a drop in the bucket for as long as I've lived. I just pray for the strength to keep going through this and get off. And no, I can't imagine going off cold turkey. Do any of you know anything about suboxone? And to you 3rdayrider and debraska, I think it's all withdrawal that you're experiencing. I'm on day 23 and still withdrawing. And my idiot doctor has the gall to ask me why I'm going through so much withdrawal only dropping 12mcg. I question if anybody understands withdrawal unless you're going through it.

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I so totally agree Sue ... until you go through it you don't know what it's like and I'd venture to say that probably 99% of the docs who prescribe the patch have never used it themselves so they have no clue. I went from 75 mcg down to 50 for a month and then from 50 to 25 which is where I am now ... I see my doc on Wednesday and I'm going to just ask him for a month of 12 mcg because I can't imagine just using my last patch in about 6 days from now and then having it be done ... just aint gonna happen - not the way I feel. My doc gave me hydrocodone 10mg - I can take 1 or 2 up to 4 times a day for the extra pain I'm getting now that the patch dosage isn't as high. They really come in handy when the mega twitches start. I never heard of suboxone so I googled it and it certainly doesn't sound like something I'd want to take - especially after the withdrawl from the patch. It contains a combination of 2 drugs - buprenorphine & naloxone. The first (bup...) is an opiod medication similar to other opioids such as morphine, codeine & heroin however it produces less euphoric (high) effects and therefore may be easier to stop. Now ... that right there is enough to scare the daylights out of me but of course ... it really isn't that much different from the fentanyl instruction sheet. It goes on & on and also says it's used to treat opiate addiction; can cause drug dependence & withdrawl symptoms may occur. Try googling it Sue and it'll tell you everything you want to know.

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Hi all, I first want to say sorry about last post being so negative. I just really hate how the docs have the power to write these scripts then don't have an inkling of understand of how to get you off of them. Their little prescription conversions ARE not accurate as to what the fentanyl really does in your system. OK, its been awhile but FIRST: about the suboxone, the pain management specialist that I talked with said that the suboxone is a weaning tool, YES, you do have to WITHDRAW from it but its much EASIER to withdraw from than the PATCH DESPITE WHAT INTERNET SAYS, you have to remember the patch is MUCH MUCH more potent than the other drugs out there...My husbands cousin who has now been clean for 5 years but messed around with EVERYTHING tells me he and his friends would rather COLD TURKEY HEROINE THAN THESE PATCHES...and they played around with a lot of crap, we are just ordinary individuals who were given medication for medical problems/reasons but hearing that from people who have tried everything from crack, cocaine, heroine, and prescription DRUGS SCARED me!! SUE...You will keep feeling miserable while you taper...I tried it several months before I cold turkey'd. I was on 50 mcg patch EVERY DAY, I know, they are supposed to last 72 hours but I was so TOLERANT that I would start having withdrawals if I didn't change it everyday, so SOMETHING about these patches or INFO on them IS NOT RIGHT. I couldn't take it anymore and just quit. That being said, I was given xanax for the anxiety and twitching, doctor also gave me oxycodone to help with the withdrawals but what happens when you start to withdraw is you become HYPERSENSITIVE and the oxycodone just made the withdrawals WORSE, for me at least. Ambien was given to me by ER doc when I went to ER on day 3-4 thinking I was going to die, I hadn't slept maybe 20 min in the 4 days and nights, I got about a GOOD 6 hours sleep and felt a little better, IT HELPS THE TWITCHES like you can't believe. But really at day 8-9 of patch being TOTALLY OFF was when I thought I might be ok, thats because you have to take into account that the minute you remove the patch you still have amounts in your system for the 72 HOURS.
SLOW RELEASE PILLS: like I believe it is hydromorphone??sp they have slow release morphine tablets, etc., AGAIN, I SAY it was EASIER for me to wean from the tablets...I think docs just don't how patches really affect you to know how to wean them, they try weaning them like other meds and IT DIDNT WORK for me. I didn't have the jitters, twitches, no sleep, feeling crazy, weak, shaky, etc when I weaned with the pills...I went from the patch to 2/3 of the patch dosage on my first round with the pills and had no withdrawals other than being a little tiny bit aggitated and fatigued, then went down and down without really feeling too bad, NOT LIKE PATCH FOR SURE. I FEEL for all of you but whatever you choose, it is worth it to get off of these things. THEY ARE HORRIBLE. I don't know how far back some of you read the posts to but these patches were first made for the terminally ill. My Opinion: If you feel you can't take the withdrawal I would go with the suboxene because as pain management doc told me and experienced people who have withdrawn many times from many things have told me its lots easier to wean and withdraw from than the Patch. I know it sounds scary but info drug company puts out its product is PUT OUT BY THEM, they are selling a product and I am not sure if they themselves even know how bad this stuff really is or they do know and want to sell more...whatever the case its my experience this is wicked stuff. @ SUE, I'm wondering which brand patch you were on the Mylan, just like a little plastic strip type or the Sandoz with the gel like stuff in the middle. FYI mine were SANDOZ, I don't know if it made it worse or not but they are in an ALCOHOL Base to help it absorb into skin, I can't help but think it made this kind worse...I base this thought on the previous posts of some people who were on the Mylan and kept cutting them in pieces and seemed to do better, but I also know it depends on how long you have been using them, I had been on them for 4-5 years...going up and up and up in dosage as you all well know. Hang in there all!! I PROMISE it will get better!! I hope I answered questions, if not give me a yell, I so wanted someone who could help when I was going through this, any advice or help for the symptoms I can give since I've been through it I would be GLAD to help. Praying for all!!

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Debraska, thanks so much for responding to my post about feeling so exhausted all the time. It is weirdly reassuring to know that it's just another withdrawal symptom. I am now on day 27 or 28 of no Fentanyl and am starting to feel a little better each day, except when I have to expend too much energy on a given day -- which is about 1/10 as much energy as I formerly had -- then I just crash and can barely move. The other thing that makes me nuts is how hard it is to get up in the morning, which is not how I have been for many years, not since I was a teenager and could sleep all day. Is this also part of withdrawal? When I was on Fentanyl I also had trouble getting up, even after plenty of sleep, and I thought it would go away when I stopped using the patch, but so far it has not. The body twitches are lessening little by little, so hang in there, they will subside! You, too, Sue K, I know just how horrible you feel but it will get better. If I can do this at age 70, I know all the rest of you can, too! This chat group is such a great support system, I'm so glad I found all of you. Here's another question for anyone who has had experience with this: I have been taking Oxycodone/acetominophen, the generic for Percocet, for about 20 years now. I started out using it occasionally and gradually over the years have gotten to where I need it 3 times a day to keep arthritis pain under control, plus another 4,000 mg of acetominophen (i.e. Tylenol) daily, plus one 200 mg Celebrex daily. I'm sure the oxcycodone is also addictive but I have no intention of trying to get off it. I would be in so much pain I wouldn't be able to function at all. I know there are risks to taking so much acetominophen (liver and kidney damage), but at this point in my life I'm willing to take the chance in order to live productively now. My rheumatologist says I am at the upper limit of how much I can take safely every day...but given my experience withdrawing from Fentanyl I am not very confident about statements made by doctors. What do any of you think? Have you had longterm experience taking anything similar to what I'm taking? the dosage is 5/325 per tablet, which the doctor says is low, but that may be just another reassuring but ignorant comment. Tell me what you think!

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hi i have being on 100mc fentynal patch 2 years, i have had withdrall after 3 days on the patch the doctor changed the dose to 2 days per patch , so now i am on 2 days per patch ,it is 1 year on and now im gettting withdrwal after 2 days ,i am going crazy i hate it and the doctor doesnt listen to me...can i get help please

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@3dayrider
I hope this is helpful. If I'm understanding you right you have to take percocet plus additional tylenol to relieve the arthritis pain; my father is also 70, he takes oxycodone but you can get a form of it that is only the pain medication without Tylenol, then he adds the Tylenol as needed for breakthrough pain in between dosages of the oxy throughout the day. I know he feels extremely weak and tired alot, I know he is concerned with liver problems as well, with liver toxicity induced by tylenol I think that may be one of the side effects, if your doc would just give you the plain oxy and then let you add in the Tylenol as needed in between doses of the oxy you may get more relief and get feeling a little better. Glad your doing better, you should start feeling quite a bit better now. Good luck all. Hang in there. How you doing Sue and Debraska???

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Tessie, Thanks for your idea about getting the oxycodone and the tylenol separately, perhaps that would be better and I wonder if that way I might be able to take less Tylenol. I'll ask my doctor if he can prescribe just the oxycodone.
Rossd, I read your post and would like to help but it's hard to say anything useful without more info from you. I think you're saying you get withdrawal symptoms after two days on the 100 mcgh patch? I've never heard of that happening before. What is it you want the doctor who doesn't listen to you to do? Increase your dose, or give you a new patch more often, or something else? It sounds like you're on a really high dose now. What did the doctor prescribe it for in the first place? And is this doctor a specialist or a family practitioner; if a specialist, what is his/her area if expertise? If you feel your doctor's not listening, then most likely your best bet is to find a different one, preferably a doc who specializes in pain management and could help you get off the Fentanyl and replace it with something else if you need to. Before you make an appointment with a new doc, it might help you to make a list of questions because most of us forget what we wanted to ask once we get to the doctor, who is usually also in a rush. You might even try writing down a paragraph or two about why you originally were given Fentanyl, how long you've been on it, what dose, and what the problem is regarding the medication and what you would like to see done about it. That will organize your thoughts and save a lot of time. I don't think I would try to go off the patch cold-turkey if I were you, because you're on a high dose. As far as relief from withdrawal symptoms is concerned, the only thing they gave me were sleeping pills and that didn't help me sleep, just made me feel worse. It seems like the best way is to taper off very gradually, like over a period of months. Then resign yourself to several weeks of misery once you finish tapering off, so far on this discussion I haven't seen any way to avoid that. The good news is, the withdrawal symptoms do eventually go away! I hope this helps.

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I had been on Fentanyl/Duragesic patch for 10 years. Unfortunately I lost my job and my medical coverage and had to slowly ween myself off in order to make what I had last. I was on 50mcg every 72 hours then I slowly increased the time between changing it. But it has been over 3 weeks and I still don't sleep, my legs and arms are always restless but especially at night when I am relaxing...that's a joke! I am irritable and impatient with everyone. It's not psychological this discomfort is very real. If I tense the muscles in my arms and legs really tight and hold it then relax and repeat, it usually works long enough for me to fall asleep, unfortunately it's not for long. But the alternative is to go back on it and although I am working again, benefits won't kick in for 3 months, hopefully by then I'm back to just being in my normal pain and this pain and restless irritable crap!

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i have been following this forum for a few days now and it has helped me so much! i cant begin to tell you how worried, irritated, and scared i was with this drug. i was getting to where i was having anxiety attacks because of this patch. i started reading this and couldnt stop. read all day. when i was finished i took off my patch. all of you have been so helpfull to me. i finally feel like im not alone. i would have posted a response earlier but for some reason it would let me. so since then i have been searching facebook trying to find tessie and paula to see if i could speak with them. no luck on that. so im back to try and again post this. all of you need to know how much ur writings are helping people who otherwise feel completely alone and lost. so i would welcome any response to this. thankyou again tessie and all for your help and encouragement!!!

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Well it looks like everyone here has disapeared! My update is I went to the doctor and explained to them that I dont want to be on this fenanyl anymore. Thier respnse to this was to basically say oh well too bad. So needless to say i left the office with none of my medications except a really small dose of norco. That will not touoch my pain! I was taking 200 norco a month for yrs prior to the switch to fent and now she expects me to go from 50mcgh to a couple of norco a day! please! She wouldnt even give me my refills for prosac! I also explain since I have been on fent I have been experiencing panic attacks and I wanted to talk about maybe something for that, which i got no respnse to. So my pharmacist informs me i cannot just stop taking my prozac.... well someone forgot to tell the doctor who has a degree that! Any advice???

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Teri,
You absolutely must find a more competent doctor, and fast! Try to find a pain management specialist if you can. No, you can't go off Fentanyl cold turkey if you have been taking 50mcg. It will be just awful. And you certainly can't stop taking the Prozac or you might have a severe depression. I don't know if you want to share where you live or your email address, but if I knew where you live maybe I could help you track down decent medical care. I'm not on Facebook so you won't find me that way, or on any other social networking site.

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Thankyou for your reply. I have seen a pain specialist and he just recently sent me back to my doctor stateing i need surgery and he cant help me becuase my problem is too big and didnt respond to injection which is all he does. So I am waiting on a referel from my doctor also which seems to be taking forever even tho they said said its considered urgent. I dont know what to do anymore. These people are supposedly in charge of my healthcare and they realy coud care less! I have complained to the clinic manager and everything. No help from her either. I dont what to do! i tried calling around fro a different doctor and couldnt get one due to me insurance or the fact im allready a patient of that certain clinic or somthing! Doesnt make sense to me. Just what all the smart profesionals are saying to me. So confused!!

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TERI, sorry I haven't been on for awhile, my brother was in a serious car accident and almost died, in coma for two weeks, anyway, he's doing better now. I am on facebook. I wouldn't desert anyone on this site because of how much it helped me. I never was able to find Paula on Facebook though. Send an email to prescription drug info and ask them to send you my email address or if this will let me post my last name is Stevens but Tessie is nickname. What is your last name.

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