Fentanyl Withdrawal, it's cruel and you will need support

Hi Carol, I survived the withdrawals over the entirety of last summer, and then some: May - September. I had been on the patch for about four years. Even weaning off by 12% every two wks near killed me. I took Clonidine for the sweats, benydryl, gravol, sleeping pills, acetaminophen with codeine, ibprophen, and basically laid on my couch under blankets with the a/c on the whole time, rendered useless except for operating my remote control. I could watch the same shows within a week with no recollection of how it ended or it's content.

I thought I was over the worst of it, but then my stomach & intestines started giving me serious problems. I'm told you will only ever get 80% of yourself back after fentanyl. Have you suffered intestinal problems too?

I have what may be a slightly odd perspective on this. Like most, if not all, contributors here I was prescribed Fentanyl for pain relief - in my case after two episodes of acute pancreatitis which seemed to then become chronic. I have to say that to a large extent it worked.

Where I might differ is that I had a long history of addiction to opiates before ever using Fentanyl. I had already gone through Heroin withdrawal a number of times 'Cold Turkey,' and was almost twenty years into the misery of Methadone addiction when I was given Fentanyl.  At the time I doubted the wisdom of the prescription, but asked if it might actually lend me the opportunity to finally some off Methadone; I was firmly told the two things were not interchangeable and it would make no difference.

About a year into Fentanyl I had really had enough of being on Methadone - which is incredibly hard to stop. I did stop, completely, without further reduction although my dose was by then relatively low, and I felt far fewer withdrawal symptoms than I had expected, probably the worst of which were lethargy and insomnia which dragged out for some months (most of a year I would guess).

I subsequently stopped using Fentanyl every day, opting instead to use it only when the pain was unbearable, which luckily was a decreasing occurence. I still get a prescription but very rarely need to use it, and will probably cancel the script very soon.

Obviously part of this is simply that my pancreatitis has ceased to be a major problem, at least for now, but as a result of my experience I wonder now if a prior history of opiate addiction had in fact made withdrawal from Fentanyl easier in some way? Perhaps that my body was familiar with the whole process of withdrawal?

I am absolutely certain that the same thing would not happen were I to become re-addicted to either Heroin or Methadone (heaven forbid, and there is zero chance of that). Occasional short term use of Oral Morphine for pain has not proved problematic either. I am certain of one thing - many doctors have only a very basic knowledge of the realities of opiate addiciton and withdrawal, and seem often to be no better informed about them than the average reader of sensationalist newspapers.

This is in no way meant to diminish the clearly devastating effects that Fentanyl has on others, whose stories here are always of interest, and who deserve our support. Well done for coming off after 18 years - I wonder if you are now on an aternative drug, or somehow pain free?

Good luck, and stay clean!

Tim

I have been on them for 25 years the highest dose in fact they don't work as well now and I have to top them up with oramorph. I am scared to come off them due to withdrawal.

Wondering if I made a huge mistake. I have experience with quite a few opiates and benzos for a severe excruitiating pelvic, abdominal, low back and hip pain. My body began shutting down because the pain was just that bad... I thought it was from a failed full metal on metal disc replacement that I had done in 2001. It was the blind study and My Doctor just happened to be in charge of this operation. This was before you heard about the metal on metal hips probably that had everyone suing because of pain. Anyway I was taking Gabapentin at 3600 mg and realized my health problems worsened every time I got an increase. I mean you can't balance your electrolytes your not doing good. Adrenal glands were shot after just 6 months of that dose. Soooo much pain! Chronic pnuemonia and infections it was so scary.   Anyway I started cutting back on gabapentin and the pain is slowly getting better and I can actually think not in brain fog!! So I'm lowering and pain pump had been scheduled and I went ahead and had surgery. I'm allergic to morphin all types so Dr put Fentanyl in and then today We almost doubled the dose. So straight to spine. Plus He said to double My duloxetine to 60 mg too. I also have my Opana ER once a day at 20 mg plus oxycodone 30 mg 4x daily. The gabapentin is at 1200 mg probable dropped too fast! No more oxicarbizapine 1200 mg too. So the CNS meds were making Me sick. Oh plus klonodine 1 mg per day. To help with heart racing. Gabapentin withdrawal. Pain is so much better that I'm worried now about constant influx of Fentanyl that's out of My control. What should I do? Anyone have idea. Just started Fentanyl so I wonder if I should just pull the plug on it because I don't need anymore of what I had. One website claims within 6 months the stomach issues will be very bad! Nooo not again!! I think after what the gab did to Me I could take the damned back pain!  First isn't duloxetine and Fentanyl a major bad combo and Fent sounds like a life destroyer and I'm sure I couldn't go through this again. I was given chance to live and it's a precious gift. I'm starting to wonder if My Doctor for pain and GP are just that clueless or He is trying to kill me off!  I know I have PTSD but now I guess I'm paranoid?! Any suggestion?! 

Hi!

I have been on the Fentenyl Patches for almost 15 years. I wear 3 100 mcg patches and change every 48 hours.

I also take dilaudid and hydromorohone (once i started medicinal marijuana I was able to cut the Dilaudid and Hydro by 1/3). The patches work for me, however I am afraid to ever go off.

I just found this forum.

I was on the Fentanyl patch for over 12 years. Personally, it was a wonder drug for me with my lower back pain (had 2 surgeries that only made my back worse in my early 20's). After I was on it for a couple of months and found the proper dosage, I felt just as sober on the patch as I even did off. There was no buzz or drowsiness. The only side effect was constipation, which is one of the most common side effects from taking any opioids. I did have to switch to every 2 days instead of every 3 as the patch just didn't last through the 3rd day, which according to Johnson and Johnson, isn't that rare. I was told by one of the CS reps there that roughly 15-20% of people on the patch for more than a year wind up switching to every 2 days instead of every 3. 

Anyways, I did not come of Fentanyl by choice. I am one of the casualties of the current war on opioids that is raging, which IMO is so misguided and so full of propaganda its mind blowing. Of the 64,000 overdose deaths, (number of overdoses per year due to opioids is one of the most potent attacks against them) that occurred last year, 95% of them were from people using illicit drugs like Heroin. And most of the remaining 5% come from people mixing drugs like Alcohol, Benzodiazepines, etc. Legitimate pain patients who go to pain doctors and follow their pain contracts to the letter, like I have done, are NOT the problem and never have been. Yes, there is no denying that changes needed to be made as doctors went to far in the treating pain direction and the rate of addiction is higher than the drug companies first stated regarding pain patients. The real figure is up to 25% that can become addicted, which means there should be some sort of screening in long term opioid use that can pick these individuals out and get them off and the help that they need. The other 75% do just fine. I was on the same dose for the last 10 years and it still worked amazingly well, but my doctor decided to stop writing pain scripts altogether due to the crackdown on opioid prescriptions so I was forced to come off of them.

I am currently roughly 10 weeks off and there has been absolutely zero physiological cravings, just HORRID withdrawal symptoms. My doctor put me on a 20 day tapering schedule, which is nothing short of cruel given how long I was on them. Everywhere I have read, a proper tapering schedule should be around 10% every week or 2 for people that have been on potent opioids long term. He cut me down by 50% for the first 10 days, then cut me down 66% the next 10 days and that was it. Anyone who has never been through withdrawal from a major drug like this just has no idea the level of misery that they can cause. Honestly, I would rather pass kidney stones every day than have to sit through the constant state of misery that withdrawal from powerful opioids causes. It unrelenting, just non stop misery. I am still extremely weak (MAJOR understatement) and have just started to get up and start doing small bursts of exercising, even if its just walking up and down the stairs 25 times. I have never felt so weak in my life. Just have to keep fighting through. As crappy as I am still feeling, the major withdrawals have subsided. 

I honestly feel sorry for anyone that is having to go through this, especially if it you were a legitimate pain patient following the rules. The only people that will get pain meds at this point is cancer patients and unfortunately I think it will take al least a decade or 2 before the pendulum swings back the other way and finds a better middle ground. Unfortunately, that means that there will be a lot of people suffering in pain in the years to come. Again, there is no denying that changes needed to be made, but they have just gone WAY too far in the other direction now. Again, if you don't have cancer, its going to be very HARD to find a doctor who will write you long term pain meds. Just a very sad state for legitimate pain patients in the US. 

I'm surprised to hear so many people have had problems. I've been on Fentanyl 25mcg for around three years now, as far as I can remember - memory was never my strong point - but I was previously on Butrans. I still have a couple of Butrans patches of 5, 10 and 20 mcg from 2015 so I'm assuming I started at 5 and finished at 20 mcg. I only asked the doc for an alternative because I got a bad rash from the Butrans, more from the adhesive than the actual patch.

I've never really had any problems with the Fentanyl, and it's the only thing I have had that has relieved the lower back pain I've had for the past 20+ years. Apart from tiredness they have worked generally pretty well for me. I've had a more recent issue with Chronic Fatigue which may be related or may be another issue, but a Mindfullness course and pacing has helped a lot with that.

Before I started with either of these opioids I could barely walk 200 yards without needing to rest at times, and work - which mainly involves working from my computer at home - was difficult. It still is sometimes, but prior to being described the patches my little business was practically dead in the water, because I could barely work, so they have been well worth it for me.

I have noted from reading some of the threads on this forum that most people seem to be on a much higher dose than 25 mcg which is no doubt a factor in withdrawal.  I'm only here now to research withdrawal issues as I have felt like crap for the past couple of weeks, having reduced from 25 to currently around 15 mcg. It hasn't really been much of an issue until recently.

I've cut down by approx. 3 mcg a week by simply cutting the backing strip and leaving part of it on. It's hard to be precise as those of you using the film patches will know, the corners are rounded and the two halves of the backing strip are cut in a wavy line. But instead of removing the whole backing strip I cut off roughly a quarter, then a half, and currently three quarters of one of the strips, hence I'm currently on around 15 mcg. I'm only mentioning this as I've noted a lot of people asking if you can cut the patches. Why? Just cut the backing strip. Job done. Cutting off a quarter of one of the two backing strips equals around 3 mcg.

As others have said they often last less than the three days they're supposed to last. That said I've had days where I haven't replaced the patches for up to 4 days with no pain or withdrawal symptoms. On average they seem to last around 60-66 hours and the first signs are the nerve pains.

Anyway, I've been OK cutting down until recently with no real severe symptoms. Initially I got the "zaps", which again were the same as I would experience when the patch had run out, though not as strong. This is what I called the nerve pain as it felt like my nerves were "jangling", especially my hands and legs.

But I haven't had the zaps since dropping below around 18 mcg. Just the headaches, and feeling really worn out and crappy. To be honest I'm not even sure if it's down to the patches. I was fine up until two weeks ago then I had a migraine for three days but I often suffer with migraines. Then 5 days ago I had a takeaway and had really bad diarrhoea for a day, stomach pains for 2-3 days but easing all the time, and another migraine, though this one is more of the naggy headache time and although persistent is also gradually easing. So as it stands I'm not sure if it's due to Fentanyl withdrawal or if I got a bout of food poisoning or something but if it's the latter I've never been this ill with food poisoning.

To be honest these are the only thing that has worked with the pain and it's only because I'm under pressure from the docs that I'm cutting down at all, and I think that's more due to the cost than the fact that they're concerned about whether they work for me or not. In the UK we pay a set fee of (the equivalent of around) $11-£12 per prescription item, with the option of buying an annual pass which costs around $150 a year regardless of how many prescriptions you need.

However, I believe each pack of 5 patches costs the Health Service around $120 so it wouldn't be a surprise if they wanted to wean me off them for cost reasons. They already changed me from Duragesic to Matrifen. I felt that Duragesic worked better but I know they are more expensive. My main concern is that EVERYTHING else I've tried for the pain, over a 20 year period remember, hasn't worked and of course I don't want to and can't afford to go back to the state I was in pre-opioid patches. I'm 58 now and it's hard enough as you get older and less mobile. 

So, sorry guys, no real answers from me. I'm still don't know what I'm going to get to replace them or if I can cope with less than I'm currently on - the back pains are increasing as I reduce the amount of Fentanyl - and I'm also concerned about being able to get them again if nothing else works. I've cut down from 25 to around 15 over a course of six weeks or so but not really through personal choice. I've had no real problems while on them and apart from the past few days, no major problems when cutting down. At the end of the day I just want pain relief and Fentanyl did that for me. I didn't feel the "euphoria" reported or anything that was particularly bad, and they did work to a point.

carol would love to hear how your feeling now , i detoxed 3 weeks ago also cold turkey and it is the most inhuman experience ever was put on them for chronic pain and hated them from day 1 but already my mind feels as though a cloud has been lifted , my muscles, bowels ect ect not so good but it shoukd never have been sold for chronic pain the compamy miss sold it and i hope one day they get there arses kicked xxx

carol would love to hear how your feeling now , i detoxed 3 weeks ago also cold turkey and it is the most inhuman experience ever was put on them for chronic pain and hated them from day 1 but already my mind feels as though a cloud has been lifted , my muscles, bowels ect ect not so good but it shoukd never have been sold for chronic pain the compamy miss sold it and i hope one day they get there arses kicked xxx