Fentanyl - A 5-minute, ligh-hearted distraction....

timeslide,

A fan of marmalade in general, LOL!!! That's the first time I've heard of such a person, not sure if you're pulling my leg!!

Anyhow, glad you liked my distraction post. I firmly believe that a bit of humour or light-heartedness helps takes the edge off a mega-stress issue like darn fentanyl, even just a tiny bit. Down with fentanyl, up with marmalade!

I am that person - long term opiates for all sorts of reasons, I still get a fentanyl script but I haven't used one in a few months and I don't plan to - almost anything is better than 'the fog' - you don't realise how thick the fog was until it has dispersed... now, at last I can taste the marmalade. I'm really not joking.. pain is no joke, but nether is pleasure, and opiates tend to kill both in the end.

Very well put, I can relate entirely. How good to be "out of the fog". Well done for staying off the patches (I haven't touched one now in just over a month also), and I hope you do keep off this hellish stuff. You have a great way with words, by the way!

Mark.

I so agree with everything you have said. I myself never realized just how bad the fog was until I got off the patch after 20 years! My taste buds have really come alive again also. A coconut creamer I had always used in my coffee is way too sweet for me now.  I have only been completely off the patch for a little over 2 weeks but wow what a difference.

My question to you is, why are you still taking the Fentanyl scripts from your doctor?

Hello Patti,

I know your question was directed at 'timeslide', but I just wanted to say, well done!!! 20 years on the patches is one of longest time-spans I ever heard of, for someone to then get off them. Congrats.

I agree so much about the taste thing. Weird thing is, when I tried to come off the patches a couple of years ago (unsuccessfully. But I have now been off since Oct. 20th) I remember that the smell of things I normally liked, even something weak smelling like a cup of tea or piece of toast, smelled so weird and horrible! And it happened again, when I came off them successfully in October. For a bit (a week or so) near everything smelled weird or awful. Then, as I adjusted, things just balanced out, and now, things smell normal (great in fact! Being part Italian, I do enjoy my food!). It goes to show, what a messed-up "fog" Fentanyl gets people into, even without realizing it.

Finally, I too am intrigued about having prescriptions but not using them? Here in the U.K., a script for something like fentanyl is like gold dust (without following the proper procedures etc..). I know, that when I was still on them, my doc would definitely have asked questions if I had collected the prescriptions but not used them. The rules with these opiates are sooooo strict here!

Hi Pointer, 

As far as my smells, I have always had an over exaggerated smeller due to my Fibromyalgia.  That hasn't changed, I can smell something way before anyone else (and it's really strong), kinda like a dog, I guess.  

Here in Florida, which is a very strict state due to all the "pill mills" they had here, the pain management doctors must due urine tests every 1-3 months (you never know when) to make sure the amount of drug they are ordering for you is in your system. DNA is very strict here and we must see MD every 30 days in order to get new script.  There is no way we could ever hold onto scripts.

I am still getting periodic migraines, for which I use Imetrix nasal sray or injectable. Another great relief from the Fentanyl is no more constipation, in fact I gave my Miralax to my friend.

Due to my awakened taste buds I must be careful because everything tastes so good now. I do not want to regain the 40 pounds I recently lost, that would not be good for my back.

My pain management doctor really worked well with me as far as weaning off the patches after 20 years. He told me to go slow and to just let him know when I felt ready to decrease dose.  He said that I am the only one who knows my own body and what I am able to tolerate.  He was very impressed how I actually did it too, he has never had a patient that had been on the Fentanyl patch for that long and get off. I realize I was only on 50 mcg and most people are on much higher doses. I must thank him for not having me go up in dose, instead he decreased the time between patches. Could be the reason he worked like that with me is because I am a retired RN and very educated about medications.

Thank you for all the encouragement you give everyone on here, they really need that in order to get this monkey off their back.

Patti

Hi again Patti,

Your post is so interesting.... sounds like you had a great combination of someone educated, level-headed, and determined (i.e. You!) and a co-operative, helpful doc who was open to listening to you.  So many docs are just opposite to that. When I started on the patches, my doc (sorry, EX-doc!) was not a pain specialist (he was a 'family practitioner'. And looking back I can tell he had little knowledge of this awful drug. He upped me bit by bit to 150mcg/hr and left me there for five years or so, leading to all the probs and trouble coming off. I wish I had known better and stopped him before!

Luckily a good pain doctor I met in hospital helped me off them, the 'proper' way.

But your 50mcg/hr is still quite a dose. I know people who struggled, sometimes never with success, to wean down from 25 or less! So it is still very impressive.

Similar to Florida, in London, scripts for strong opioids "expire" after 28 days, but automatically. Even if someone hid one, and their doc never knew, after 28 days the pharmacy would swipe the Bar Code that's on every script and it would show as expired, and useless. We don't have urine testing (yet?!) at least, though!

The encouragement that I (and all the others, obviously) give is the least I can do. I have been there, and know what a nightmare of a monster this stuff can be, so I will give any help I realistically can.

All the best.

Mark.

Hi Captain,

First of all, getting off this stuff is tough, if if for "only" a week so far, so keep going!

50mcg/hr is not a small dose (though I know all people are different) and after 10 years, to get off it, WELL DONE!!!

I was in a similar position to you it seems (but, from what you have said, my withdrawals were worse - but it is not a competition!!), in that, I mean, my GP also gave me Clonazepam (a drug in the same 'family' as Xanax, a Benzo), and also 15mg Oxynorm, 4 times a day. These definitely helped take the edge off things, and stopped me climbing the walls!!

I will also still need pain meds long-term, so am looking at my options.

As for your final two points: opinions, experiences and studies vary hugely. According to some, after final patch removal, it is out of your system in around a week. But others say it can take several weeks (or even more). For me, I think after 2 and half weeks, roughly, I felt it had really left my system and I was out of the fog.

And finally, another controversial one, that will get many different answers!! The medical thought is that after stopping something like fentanyl, we eventually re-gain a degree of being an "opiate virgin", meaning that eventually, even smaller doses should be effective, especially if a different opiate, eg morphine, is used (this is similar to the idea behind "opiate rotation". But I'm sure others will share their own, different, experience and opinions. Hope this helps, and good luck.

Mark.

In response to the concept of becoming an 'opiate virgin' this is indeed a controversial issue, and one whch I suspect varies between individuals. Personally I disagree to an extent - when in hospital I have found that morphine etc do their job and there is little discomfort from withdrawal after a week or so of use, but in a home environment things are different. This might indicate a psychological aspect, but I'm not sure it is that simple.

As someone who had long term opiate addiciton. supposedly 'cured' with methadone, way before being put on Fentanyl, it is my experience that having been addicted once it is much easier and more likely to get addicted again - it is as if the body has a memory, and that the opiate receptors are 'biding their time' indefintely for an opiate to enter the system. Once it has, they revert quickly back to old levels of tolerance and need.

I suppose one could equate this with smoking, in that to becomeing addicted to tobacco is not that easy, and can take months of use before one really feels the physical need for a cigarette. But once addiction has been established then even a 20 year break from smoking will result in rapid re-addiciton if smoking is resumed.

As I said, I'm sure this varies between individuals, but my experience certainly goes against the idea that one can return completely to a pre-opiate state.

Agreed- I think also that a return to complete pre-opiate state is probably impossible.

i read ages ago that ex heroin addicts who relapse, it is often after 20+ years, for similar reasons.

timeslide, you had a heck of a journey, getting off methadone, thane fentanyl!! Wow.

Hi,

You are quite right about the smoking, I have been off them for 30 years

, yet still get the craving now and again and it would be easy to start again. I

Was a soldier for 30 odd years and untill the 1970s cigarettes were in our field

Ration packs which we got every day, quite dumb looking back now.

Well done mate on what you have achieved, you should be proud of yourself.

Thanks Mark. My GP is keeping me on the same dose of Oxyfor 3 months

Then we will be looking at attempting to reduce the dosage. I am heading off to

To a psych facility here on Oz for a 3 week stay to deal with depresson, anixiety and PTSD,

The faclity has exceptional results in helping to get people off opiods completly as well

so I will keep the progress posted on their techniques and the results.

Our journies arè unique, the stories I read here are heartbreaking yet show

That those have courage beyond what I have seen as a soldier for over 30 years.

Wow, captainzero, your words are inspiring. I cannot (and would not ever want to) imagine what you saw and experienced in the field. you are super-strong, no matter what invisible injuries have been left.

i think that three months of Oxy should really help (3 weeks of Oxy helped me. I could NEVER have given up the patches without). 

Please keep posting ting on your progress. Use the Oxy carefully, I mean, when you really need it, rather than just because it is on offer, if you are allowed. This will help avoid you getting d pendent on that, hopefully.

i am lucky in that I have never suffered PTSD, depression, etc, nor seen any real acts of war. So well done, stay strong. You are amazing. 

Please keep going, never give up, and keep posting. I, and I'm sure everyone on the forum, all rooting for you and wish you all the best.

Mark.

WTG, I am basically at the same place as you are. I was on 50mcg for 20 years and finally am free!! It's been 2 weeks for me and I can't believe how the "brain fog" has lifted and my taste buds have been reborn.

Something that really helped for me, pain wise, is Krill Oil 1000mg twice a day.  Just be sure it is the Purified Krill Oil.  It works as an anti-inflammatory.

I am still using Percocet 10/325 every 6-8 hours until I can get my spinal cord stimulator inserted.