withdrawing from fentynal

i am so grateful for the replies. 

i am more than grateful to be part of this forum.

i hope we can continue helping each oter.. as well as learn more together about not just withdrawal.. but ow it affests our diseases (or reasons we were or are on fentynal-and need to now get off) 

also..to learn about supplements and vitamins.. and for tose of us with immune disease.. to help in tat way too. I am not sure if i have lupus.. but did test positive. i a,=lso have crons ..and --wo knows.. maybe my severe ount and tendon pain is...more about luus. i dont know. my dr wants me to not worry..and says it may be the crons that caused the ana test for lupus.. to..

well..so much of autoimmune disease where white cells attack false .. oh.. too much to write now. but.. wanted to say.. they all are somewat tied together.. not te "same" ..but.. not ..well. 

it all played into why many get put on fentynal. and then..many are put on it for other reasons. but.. i do know autoimmune stuff like lupus / crohns etc etc often led to fentynal. 

as muc as i don't like or trust pain meds.. i trust bio-engineered meds less. -even to some ..like remicade..have been out awile.. tey still know.. little to nothing. we are guinea pigs in many ways. i only wis all dr were more sensitive to us who are going thru..endless meds.. being put on  and then off.. because it..is too dangerous. -but..ten.. what will appen?

i ask eac of you wit auto immune disease.. esp. lupus.. your stories.. if you wouldn't mind, 

i am doing my best to stay positive.. and not tink on tis too muc.. but.. need to be informed..as well...as in a forum with iters like you all. whether you ave autoimmunes disease or not. 

i mean... tisnis about withdrawing from fentynal... 

and it is important to keep it just tat.. but ..i tink some tak on wy on it can be of help as well. (not sure).. 

big hugs to all of you, 

have to go.  

PS: sorry for typos.

many are due to keys on my keyboard not working well-and i have to make sure to press hard for the letter to sow up. H is worst.. but L  K  "return"  and a few more i often don't notice when it doesn't type throug..i try to edit.. but.. today..am short on time.. will do my best. ..sorry 

Hi there,

You are doing great honey, just take it one step at a time.  The shakes and the blues will go away pretty soon.  You are making a wise decision to get off the fentanyl as soon as you can, I have been on it since 1998, and am now down to 50 mcg patch every 72 hrs, was on 100 mcg patch every 48 hours for at least 10 years (probably more).  It is a mean beast, for sure.  A new pain doc told me last week that 1) back in the late 90's when they started prescribing fentanyl they did not know what they were doing and 2) it was assumed it would only be given to folks who were terminal, in other words, would die and never need to withdraw.  On that bright note, I will say that the stories here on this blog are inspirational and I have often said we are the face of fentanyl withdrawal, for any professionals who care to look.  It is honestly a brutal thing to go thru, but the bright side is never going back to it, there are other drugs that are much easier to go off of.  I was taking 240 10 mg vicodin a month and quit cold turkey with little to no symptoms, so that is a ray of hope.

I would encourage you to read all of the fentanyl discussions here and find someone you feel is like you, and reply to one of their messages, or private message them, you can do that by clicking the little envelope by their name.

Keep fighting the good fight, and be another success story, OK?

Best of everything to you,

Leigh

i..i am going to try to read soon. i want to really kniw what all you have and are going through.

i love that we can help each other. 

...i just have not been doing so well since going from 1 and a 1/4 patch to 1 patch ...i am 1/2 off (was on 150 every oter day...for many years...forget now.. maybe 8 or ? maybe 10? i -have to check.

i try to keeppositive.. but admit.. confusion w my sort of ex bf are hard. -he is so great..but aso..can disappear a bit. b/c of tings with us.. i still love uim ..and he loves me..but0is scare dor? -i can't takeit now. -i don't know what to do. he cancelled today (1 example of disappearing) he asked about caling later. -(we tak every day)..but i asked if i can call when i am up to it..likein a few days or so.. he was trying to say tings.. -i know..feltbad about cancelling.. and -watever else..-i ..can't do it. -i think ididthe best thing ..i don't know. -it's hard..and i wish it wasn't going on at the same time. 

also..

i found i definitely have: Systemic Lupus Erythematous

to anyone wo has this.. it would mean a lot if i can know how you are doing with it?

feeling very shay ..inside my body. feel feverish. luckily no D or flu stuff.. ..tat would be the worst (for me) but.. this is ard. also a little pain.. i take ativan...for my illness..disease..whatever.. it helps tis too. as does clonidine. 

may need to ask for a breakthrough pain med..and hope mw dr will alow it. i see some of you,. or ...however many- have gone onto or ..? -tings ike percocet. ...does it work? comparedto fentynal..percocet is ike"nothing".. i used to get hydromorphone 4mg for breakthrough..but--even taking 4 or whatever..did nothing, my dr saw i almost never used it..and said it is no surprise: compared to fentynal it does nothing. 

will read ..typing now..-well..don't feel well.-very saky inside..and -feeling..oh no..i hope not ..te flu stuff. 

sorry.. i am positive.. and determined... but i nweed to speak what is appening. 

i admit.. even tho my dr prepared me about te lupus a few week or so ago-..andi alweays wondered.. it is still scary to know it is now known as a fact. i will read about it.. but..hope some may ..?

must stop writing.. also-still a bit upset re my  (ex?) boyfriend. .

i feel bad..and will miss taking.. but ..it urts..and-emotions are already igh with withdrawal..so-.. i ad to. -but.. i also..care about him..and i don't mean to.. -.. 

ok. next times i write..i will write when more clear. hope people wont see me as negative... . thanks; will reply to new notes later.. but reading now. or..in a fewminutes. need to just ..time-out first. 

hope everyone is doing ok ... hugs to all of you. <3

Hello Andrea

I see that you posted a month ago or so, so I wondered how you were doing with weaning off of fentanyl, and if you were feeling any of the symptoms I've had since being fentanyl free for 3wks now.

I was actually surprised to read the heavy dose you were prescribed (2x 75 mcg/hr) every other day. I hope you have defeated the worst of it.

At first it was like hell, and I was alone suffering. Even though I weaned off very slowly, every step down was killer, and the last 3 days were worse.100x stronger than heroin, fentanyl should probably only be taken if you never will be getting off of it. It works very well for pain - but is it worth the withdrawal? I say no.

It's been 3wks, I still have insomnia, fevering, my system is out of whack - especially my stomach: I've never felt so bloated in my lifetime of 46 yrs! Please let me know if you have experienced this too. I am still sluggish but not as immobile as I was. My neck injury burns and pain crept back, so I turned to topical cannabis oil in form of a speed stick from one of the new compassionate clubs we have in our city. It works pretty good. I feel like I have my mind back too, which is great. We should be proud; not many could handle what we've been through. It can b difficult 2 get the healthy exercise I need feeling the way I do, but I try. I've learned not to get too excited when i do have the odd "great day" but look fwd to a time when I won't have to worry about it. I wish you all the best with your journey, and hope you are feeling better every day.

Hi Andrea,

I have been on fentanyl too many years at one stage I was on the maximum dose and overlapping and also taking 60 milligrams of oxy and about 8 tablets a day of 100mg Duloxetine needless to say I was a mess.

It got so bad that I thought I was about about to take a long drive on a short pier, I'm sure you sympathize with that point.

I have a serious neck problem in my spine and 13years ago I was very lucky to come across some news about Procain trigger point therapy, it saved my life!

After this my pain was reduced and I considered for the first time seriously reducing or coming off the fentanyl. Coincidentally ran into a nurse who worked at b drug support centre here in Perth where the only doctor in Australia was treating with Naltrexone implants.

I've had two sessions of that, each treatment can last 12 to 18 months.

Finally I had to get back on the same fentanyl but at a much lower dose now, I am considering Palexia recommended by my doctor.

Withdrawing from such high doses on your own can be very very difficult especially if you are still suffering so much pain. The Naltrexone implants are tiny incision in your belly it works immediately and washes the drug from your system and cuts off the receptors that force you wanting the drug.

I found the hardest thing was the pain in my legs which is often associated with long term use of synthetic drugs. I found it difficult to stand up for three days, difficult to walk for 3 weeks and for about 6 months found it difficult to stand up with out some support as your legs appear to become so weak. This can be reduced and helped bye having Epsom salts bath and drinking tonic water as the Quinny helps the cramps.

I hope this information helps you please let me know if you need more details take care regards Bob