Fentanyl withdrawal is inhumane

Emms, you do what you think is best for you.  If you think you are on the easy side of the withdrawal, then go for it, but make sure you are given enough drugs to keep you out of the emergency room with the withdrawal symptoms.  It is a very hard drug to come off, as all of us here will attest to.  It is the hardest thing I have ever tried to do, and wishing won't help a thing, but I wish like heck I had never started the drug over 15 years ago.  The withdrawal symptoms I have are just awful awful leg cramps that are just from hell, and they scare me so much, I have been up all night with them before screaming until I had no voice left.  I am glad you are doing this with medical supervision.

Please stay in touch, you are in the right place with people who care and have gone thru or are going thru the same thing you are, and you can help every one of us with your experience.  We need to stick together here, we are the face of fentanyl withdrawal and I hope someone is paying attention to how very hard it is.  People have died trying to get off of it on their own.  I am sure I will need to be hospitalized to completely come off.  I have gone thru valium and vicoden withdrawal and they were a walk in the park compared to fentanyl, because of the physical symptoms that your body displays when the dose is lowered.  I have gone so far as to put an old patch on my hand to rush the drug into my system when withdrawal starts. I would NEVER suggest to do this with a fresh patch, as you can easily fall asleep and never wake up.  Perhaps I should never have mentioned this method.  I have kept just about every patch I have taken off over the years just because I have always been so afraid of the withdrawal after I experienced it the first time, when I had first started the patch, I decided I did not like how I was acting, I was alone, camping in the mountains, and that is the night I screamed, my legs were cramping so badly, I cannot fully do it justice in words.  I slapped a patch back on, giving up, and here I am 15 years later.  Actually one of the reasons I stayed on the patch after that experience was that my doc was so convinced that the patch was the answer  to my neurogenic pain in my legs due to MS.  I know at the time he had the best of intentions and I don't believe anyone knew at that time how hard it was to stop the patch.  All the best to you, please stay in touch and let us all know how you are doing.

Leigh

Hi Leigh! Once again, great advice, as always in theae rooms.

Something you said speaks to what Im trying to find out. You mentioned "starting withdrawals after 'the first time you STARTED the patch". Im trying to find out if after ONLY 1 month on the patch, then stopping, is enough to have bad withdrawals?

Im very aware im at a huge "life decision turning point" . Iv just had my 1st referral from my Neuro & GP, to a pain mngmt Dr. to possibly see about getting on the Fentynal patch. Im VERY aware of what this can/will mean for me! Although my justification is, I want to have (& need) the CONTINUOUSE pain relief, compared to taking 4 Hydro 10's a day. (Neck problems) I am SOO curiouse about this patch stuff and LONG for being able to not have excruciating pain the minute a pill wears off! However, that being said, we are a 12 step family......iv got a daughter in Recovery and Im a Alanon momma. So im hugely aware plus iv gone thru opiate withdrawals from Hydros. SOO, I am believing everyone here that says Fent (i can NOT spell that atm) is the worst with that.

My question is.......do you think after just 1 nonth of me using one will create this Hell yall speak of, if discontinued? Even stepping down to lower doseage, etc. Im sure your thinking along with myself....yea right, sheel only use it for a month!Trust me, I know! The reason i say this......i have very high tolerance. Also Ive tryed Oxys, over my Hydrocodones & found it didnt help as well as Hydros, oddly, but thats my personal opinion. Of course my Hydros dont take away the pain really, but im in so much pain now, iv GOT to decide......do I want to do the Fentynal roller coaster of life, or make the decision NOW, to not even TRY it! Im very aware if I do, im looking at hospitalization to get off it at some point in my life IF i ever DO!

Which goes to my original question......when you said, your withdrawal symptoms in the beginning, did you mean, in between patches........its that bad??? Ugh

Ty! And sorry for rambling, Im mobile typing this up.

Thoughts? Comments?

Hello Kimmi:

Yes, during the time I took fentanyl (4 yrs), I went through withdrawal between patches far more often than not. Trouble is, I had no idea that is what was happening until I began my retreat downward from 100mcg/hr to 12mcg/hr patches. I thought it was par for the course of being on fentanyl. It's been 2-3 wks since the last patch was removed and I am still in full blown withdrawal. I will say that fentanyl did wonders for my pain, and was the only thing that seemed to work for my neck injury. The cost was just too high. I pushed away everyone who cared about me, became a totally different person, gained a ton of weight, and became a lazy couch potato. I used to be the exact opposite. I don't believe any other pain med can be so life altering. Withdrawals definitely happen if you're not right on the hr. with changing the patch, and if one out of the hundreds of variables are not met, like timing, where you put it, if your skin is completely clean, etc. and the withdrawals are just as bad over the 4 yr. journey as they were/are when i quit all together. Remember, it is 100x more powerful than heroin, and although I've never done it, I know that old users are only using To avoid withdrawals. Fentanyl has proven to me that there are definitely drugs out there I cannot take or handle for pain. I have dropped 5 lbs just by my body detoxing, and am thinking clearly now that the fog has lifted a little - unfortunately it's made it all the more clear that at least 4 yrs of my life seem unaccounted for. I hope everything has worked out for you, and that you have found pain relief that works well for you. What works for one may not work for another. Take care!

Hi

after 19 years i am fighting to get off with no paon pills nothbing to help me at all i started cold turkey off 100 mg almost died no one told me how had it would be my brother did not make it he hung himself last year at first i could not understand why he took his life but now i know why i am at my end i though as days go by i would feel better but no i am still as sick now as when i started to get off 

dose it get better? this is not life i feel like a zombie all i think about is  finging a way out to end this nightmare but i dont want to burn in hell 

i am so so sorry for all who have to live this hell may god help us all 

dose anyone have pins and needles and feelo so so cold forget things not know if your coming or going ?? 

if anyone can help please do after 19 years of 100mg to nothing not even  anytrhing for pain i have bars plates screws in my neck and spine and was told i needed pain patch 24/7 now i went from 24/7 patch to nothing at all i feel after 19 years i will never be free of this poison  i feel i only have one way out :}}} 

please forgive my typeing i am out of it 

Hello billytom,

First of all, I may sound like I'm repeating myself as I say this often in cases like you, but....19 years is a heck of long run of use to come off the patches. Can you give some background?

Why are you coming off? Is it through choice, or are you forced to, or other reason?

What was the time-span involved? I mean, from your usual dosage, you cut down by a half. Then for how many days/weeks did you go, before cutting down again by half, etc?? This is really important, because, (especially without the help of some short-term substitute, like another weaker opiate or a benzo just for a while) that is a very steep reduction. After 19 years, many people cut down at much more gradual pace.

The short answer to your main question is, YES, virtually everyone gets out alive ( there are a few reported cases of tragic deaths, but I don't know the proportion. I'm pretty sure it is very, very low.) I, like many others I'm sure will agree, OFTEN wanted to die while coming off, or even just if I run out, or ran low, for some reason. But it is so important to hang in there and see it through. It DOES get better. If you relent, and put a patch back on, you may have come a long way for nothing! You may even be near the end of the withdrawal, and put yourself back to step one! That's  why it's important to know how long you've been doing this.

As a minimum, follow the basics that get repeated over and over here : stay hydrated!! Many people find cola and other fizzy drinks are best as the sugar helps. Try some excercise, no matter how light. Try and distract yourself with funny books, movies etc. And perhaps most important, have someone with you, through this. If not someone physically there, then keep posting these forums. Post updates, questions, anything. Many people here will reply to try and help. And if things are intolerable, or you think you are really, very unwell then always consider the emergency room.

I hope this helps even a little! Please post again, to update, and say how you're doing!

Hi Leigh

I know your post is older but I'm 2 weeks off 50 fentanyl cold turkey and my biggest complaint is the leg pains. The initial back pain that sent me to the patch is very tolerable. These nasty creepy painful restless legs are the worse. I keep hoping one day will be better. I'm taking vicoprofen for the leg pains when is was prescribed for breakthroughs back pain while on the patch. I feel like I have had the flu for a week but I got the symptoms right after a massage. Maybe that wasn't a bright move sending all the normal toxins through my body. I wish I had a definite date when I would feel normal. My head is always foggy like a head cold.

Support and people who have been through this is the best therapy. Wish I could find a live support group. My family doesn't really get the pain and I know they are sick of hearing me talk about my research and feelings

Wow, Emma, this sounds really strange, it sure sounds like it must be some kind of strange kick-back withdrawal, but I am certainly no expert on it.  I hope someone with some experience answers you.  Sounds like you are doing the right thing by taking the oramorph when you need it, and having things on hand just in case.  Please stay in touch, you are awesome!!!  Leigh

I forgot to add my doctor gave me Percocet for breakthrough pain but I've never taken them I just stuck with the patches. Don't give up your fight no matter how hard it gets, quit making the doctors and drug companies rich stand strong you can beat this!!!

Kimmi

When I read the rather incoherant nature of my original post I realise i still was not quite myself after many weeks. The truth is that the really brutal withdrawal is about 48hours. Zero opiates.. full on noradrenaline (bad) and after this your body will start to wake its natural hormone production again. This is hell , so bad you will not remember most of it... on day 4 I got into my car and crashed it in the first 100 yards narrowly escaping my death and gof forbid anyone elses. I was out of it. After a week its bearable but cravings are massive if only not to be so tired. This is better after a couple of months and i would say it takes a full year to feel yourself again. This is my experience.

After 2 years I am in the gym 5 days a week and as fit as a butchers dog.

Hope this helps