coming off Fentanyl success : id just like to... - Pain Concern

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coming off Fentanyl success

mikewitney profile image
17 Replies

id just like to add this post from someone who is has been through Fentanyl and it effects. i had started on zomorph for 3 years then went on to Fentanyl building up to 150mcg/hr. i have been on Fentanyl for 3 years. i started to come off 12 months ago and it has taken me over 12 months to come off completely. while on it i was doped up and had no life at all. ok it took away the pain. but whats the use if you can remember anything, you have no sex drive, your constipated. and moody. if i could go back and tell my self something. it would be run away from this drug.... coming off this drug is even worse. withdraw is bad and sometimes painful. flu symptoms stomach pain. and really bad mood where no one wants to be near you.. I'm glad to say i have taken off my last patch today. and feel really good. my pain killer now is pregabalin / nortriplaline / I'm getting a bit more pain as before but its with the exchange for my life back.. my bowels rare regular, my sex drive is back, and I'm happy and cheerful. if i can advise anyone thinking about Fentanyl.. all i can say is try to find an alliterative please.

_________________________

update after removing my last 12mcgrm patch i felt as above great. but 72 hours after removal. i feel crappy. all my joints are sore. can't focus. back pain shooting up 10 fold.

took a 10mg zomorph at 2am last night and an extra noratrpitaline to help me sleep. i know the zomporph will only last 12 hours. but its now 9am on 16/1/14 and i can bearly move due to the pain in every part of my body i only slept a few hour.

will update in 24 hour how i feel then ..

image of me in my recliner chair. hi guys

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mikewitney
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17 Replies
Bananas5 profile image
Bananas5

Hello mikewitney.

Well done It can't have been easy particularly on such a high dose.

Unfortunately for many opiates in varying forms are the only successful CP treatment for many. Alternatives are treid with no relief and opiates can often be the last port of call. They are a highly restricted drug and never given out lightly. For some people a lower dose in conjunction with other drugs does work. You can also lead a fairly normal life, not entirely pain free, but have some function without being a zombie.

The drug cupboard is wide and varied and somewhere in there will be a cocktail right for everyone. Months, if not years, of trial and error but people should never give up. Oh yes and alternatibes to drugs too like TEBS, acupuncture etc.

Pat x

Hello

One thing we always have to remember when strong medications are taken the problems of drying out has to be taken into consideration. The possible best way is to alter the dose up and down as the condition dictates. This can control the contraindications to some extent, all it means we have to know our condition and the amount of Opiate that we require at any given time

Sadly pain medications such as Opiate type medications are taken on an understanding of benefit and problems associated with this type of medications, we need to be informed and listen to the problems associated with them

Good Luck

BOB

alfiep profile image
alfiep

Wow, well done you.i decided recently I had to stop taking opiates.i too suffer with the same problems you had and it's got to stop.i realise it's going to take huge efforts but I have managed to stop smoking and drinking so I'm hopeful.i am currently on huge amounts of opiates, 28 x 20m oxycodone and 10 x 5 mg methadone per day and I have just started to reduce that amount this week.There's a long way to gobut iam very determined I will succeed

mikewitney profile image
mikewitney in reply to alfiep

well done i hope u succeed its been 72 hours since i removed my last 12mcg patch. and I'm in hell this morning everything is started to hurt. not just my back but all my joints. i think this is the rest of the drug leaving my system. but feel really crappy. i got up last night and took a 10mg zomorph just to take the edge off but its only just working . will update soon to see how my body reacts to no fyntynal in my system sorry about spelling. my eyes finding it hard to focus

Yorkshireste profile image
Yorkshireste

Good luck Mike,as you know it's will power and you obviously have that in abundance,I'm also on Fentanyl,50mcg/ph and still cannot walk I'm thinking about getting the 75mcg/ph,Mike could you tell me more about the Zomorph and the noratryptaline,i have C.R.P.S and my life is struggle,I feel more like a number than a person,I too have given up a drug which was starting to rule my life,in my case the drug was alcohol I was supping upto sixteen cans of Holstein pils a day,I felt sorry for myself not been able to walk,not much family,the only mates I have only pop round to see me when they want to borrow money,anyway I've not drank a drop since 31st December 2013, I feel much better and my weight has started fall off me Yippee,hats off to will power,one other thing Mike I too suffer with constipation due to Fentanyl and the sex drive thing affects me but it is Dihydrocodeine Tartrate which is the culprit for me,I was also blaming the 600mg of Pregablin for my weight gain,but it was the alcohol which I used for my boredom which was to blame,well done to you for getting off the Fentanyl,look after yourself fella,all the best Yorkshireste.

mikewitney profile image
mikewitney in reply to Yorkshireste

zomorph isn't as potent as Fentanyl, and one table only last 12 hours its slow release morphine. but the Fentanyl is better as it last for 72 hours, and you don't need as much as its more potent. nortriptyline for me is my sleeping tablet i use it at night time to stop my pain disturbing me too much at night.... and don't worry i used to drink on Fentanyl in fact new year was a doosey. lol.. but bear in mind id been on it for 3 years and it was losing it effectiveness ..but i was still highly addictive and was taking it just to feel normal. i have found a drug that helps with the zombieness effects of the drug. its called moderlert. and only to be used ion days when you need to be active. as the following day ur useless. students use it to cram for exams. its legal here and i can buy it on line. I'm in the UK. but it might be different in other countries. and please read up on it before taking it. i tried efferdrine. and that was bad for me ... but each to there own I'm glade I'm off it and after the update its 14:20 and I'm starting to feel normal. and all i have had is my pregabalin. since 9am

Pheonixalight profile image
Pheonixalight in reply to Yorkshireste

If you would like best buddies and mates to help you in not drinking, and would like to have help how to find a better, happier life - try Alcoholics Anonymous. AA is the the most famous - biggest - entirely self supporting community in the world, and they are a fun crowd too. So if the Holstein pils gets you again - think about it.

Also I find that I have to keep my 'spirits' up in other ways - for me to feel happy & content while coping with PD & life. I use self help CD's - now in your photo I noticed a guitar - so you may be a creative type of person. The CD that I am using at the moment is very good at getting me to feel inspired to do creative things - it's a Hypnotherapy CD by Glenn Harrold, title 'Heal Your Body', it's amazing how motivated it can make me feel, not always, but I persevere.

I read self help inspirational books - recently read John Pepper's book 'Reverse Parkinson's Disease' this is about not giving in to PD, and what he has done to reverse his PD and what he does to live inspirationally with what parts of his PD he still has. Also it was having access to HealthUnlocked posts that helped me to pull out of my despair and despondancy & to try and get back to fun in life.

The book I am reading now is 'Brain Over Medicine' and it's an amazing book - I felt so inspired - I noticed that I was walking in the house like the old me - no shuffling - no stooping and I wasn't even trying to walk well, but my brain remembered. Went out shopping with my husband & we were like two kids - moving fast for me and trying to out do each other!! It probably was a very funny sight, I had a limp on my left side and my husband a limp on his right side - sort of like being in a sack race. But by the time we got to Argos (very lovely helpful young lady there) we were both out of puff and had to sit down and recover - but it was FUN. BUT reading on - there is work to be done by me - same old same old - we are what we think - and I keep on forgetting that. But I believe now that I actually did create the dropping out of life that PD created for me - and IF I DID then - could I not RECREATE a healthier me - I actually do think I can -there I have said it - but I do need the help that I need.

And I actually got another kick start by a posting couple of days ago by the description ' swans swimming in a mist' I felt ashamed that again I was not looking for the wows in life. Anyway there we are - my take on life today. I end by wishing you your best of health & happiness.

WindowGuy profile image
WindowGuy

Hi hope your feeling better.

When you started out on fentanyl what strength did you start at? My GO put me on it yesterday 12mcg, my problem is I am aleric to all codeine's & morphine.

Thanks.

mikewitney profile image
mikewitney in reply to WindowGuy

i started on 12's my advice is to keep it as low as you can and it takes about 72 hours to get in to your system and be prepared to sleep a lot... i was sleeping 18 hours a day. if u have to go on it please read the side effects. you will get 90% of them. its a good pain killer but bad side effects... its taken me 12 months to come off so you need to prepare for that aswell

mikewitney profile image
mikewitney

update friday 17/1/14 im still getting joint pain in my hands from the withdraw and arms and still craving the drug....

im hoping this will end soon.....

Yorkshireste profile image
Yorkshireste in reply to mikewitney

Although Fentanyl is addictive don't be afraid to get a higher dosage if it isn't working,i started on 12 mcg but it just wasn't enough,I'm now on 50mcg and still cannot walk

superannie profile image
superannie

I feel for you getting off the drug. Good luck and well done on your progress so far. This is the thing with pain, when you finally find something that helps you lose so much too. Hope all well soon, hang in there. Ann

mikewitney profile image
mikewitney in reply to superannie

well here is saturday i had 7 hours sleep ( sleep still interrupted ) but all my joint pain has gone. just had a head ache and sensitivity to light this morning... but that wore off after a cocodamol and i went off to the swimming pool for some uppper body excesses. my wife came with me to the baths and i felt great after the swim.... now i feel i am free from all the with draw symptoms at last. ok the pain is still there and i am still on crutches for the pain but !!!!!!!!! I AM FREE !!!!!!! from the opiates

Firefighterengine12 profile image
Firefighterengine12 in reply to mikewitney

I would like to know how many days it took you to wean off your 12mcg patch. My last one has been on for 4 days and I am doing okay. I see this post is 4 years old but also want to know how you are doing today. I broke my neck, had 2 new shoulders ,and 2 hip replacement surgeries. I want to work again and I want a life again so I to stop taking pain medicine. Thanks

Yorkshireste profile image
Yorkshireste

Omg what have I done??? Lol was reading script on my ipad,do not know how this happend

Poohbear_1 profile image
Poohbear_1

I am taking the 100 m.c.g Fentanyl patch it takes away most of the stabbing pain in my back but not the nerve pain/feeling in my legs and pelvis i tried the Morphine patches but they did not work at all. I just hope i can get my back sorted out so i dont have to take pain medication any more fingers crossed.

Off topic sorry

What's the guitar behide you ? Are you still playing ? I can only sit for a short time to strum

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