Fentanyl withdrawal is inhumane

it is a shame that in your country the government and powers that be will not open their minds to the definite beneficial properties from medicinal marijuana products.  Here in Toronto it has been decriminalized but not legalized unless you are on the federal government program but even that program has now been put on hold. Fortunately in our big city the police do not hassle anyone who goes to the medicinal marijuana clinic and they do not hassle the clinic. There are specific rules we must abide by and as long as we do, we remain members in good standing and the police all of us alone. I'm so sorry that your country is not doing more to promote safe medicinal marijuana programs.

Hello Janet and Rafa,

I live in the UK. It frustrates the HELL out of me that our government is so afraid of losing votes among the "respectable" middle-upper classes, that they wont even discuss the medicinal aspects of cannabis.  Unbelievable. And we are meant to be an intelligent, compassionate first-world nation, like Canada etc. It is simply about the fear of losing votes among the "important" sections of society, much the same way that the US cannot implement gun control laws, because of the loss of votes and financial support from the powerful groups such as the NRA that vote for them and contribute huge finances to them. Its a disgrace, the misery of people suffering long-term chronic pain is not even considered. Ok sorry for my political rant, but now its out of my system!

I do NOT advocate the use of drugs, especially harder drugs, for recreational purposes. But take heroin for example, the "worst, hardest" street drug of them all.  Got to any hospital in the UK, and they re-name it "Diacetylmorphine", the chemical name for heroin, and it is used to relieve very bad pain such as heart attck, traffic accidents, etc. Why can cannabis not be the same? Still criminal to carry, deal etc for recreation, but legal people in chronic pain, and of course, far, far less harmful and addictive than heroin.

I have had chronic pain all my life, due to my condition. When I was young (up to about age 25) it was not too bad, but even back then I had many aches and pains. At university, I was very innocent about drugs. I have never smoked (cigarettes i mean). Yet I remember being "stoned through passive smoking" the first time. Yes, inhaling smoke is very bad, yes now smoking is much more limited. But i still remember thinking, "hey, all my aches and pains have gone" it wasn't until it happened again at another party, that i figured out what was going on!! It worked wonders, and i got friend who were regular potheads (nearly everyone was, on campus!) to make me some 'space cakes', and they worked a treat. But after leaving Uni, i lost touch and didn't know anyone with access to cannabis (or knowledge of baking!!). What a shame our government is so messed up!!!

I personally went off fentanyl because it was only working one of the two days and I would start with withdrawal symptoms. I went on fentanyl originally so o would not have the ups and downs of other pain killers. It was recommended to me for s more around the clock chronic pain management. I don't know about others. I was on fentanyl for 16 years. Stopped 11/4 and still dealing with major RLS like Melissa

16 years on Fentanyl .. Wow that's got to be some sort of record.

Same for me though Carol with regards the withdrawls... I ended up on 100mcg's of Fentanyl and started getting the withdrawls after about 48 hours... Having to wait another 24hrs before I could have my next patch wasn't great at all. 

I did think that Fentanyl would be the worst to come off after about 6 months but for me Dihydrocodine withdrawl was far worse :o

I'm still on Vicodin and take 3-4a day. My biggest complaint at this point is the RLS and aching legs. Never sleep much but I can deal with that. The original back pain problems are very minor. There are so many worse off than me so o should be counting my blessings. I do go to work every day and can walk shop go out and do things. It's when I sit still o feel o will jump out of my skin. I just hope this forum can help others get through it like it did me. People on here saved me from suicide when o thought o could not cope but each day is a little better. Hope you can find relief to enjoy life every day.

Hi Michelle,

I wanted to jump in here because I was on Fent 12 years and the reason I had to stop was because my doctor decided he was going to stop prescribing any narcotics to any one for any reason, as are a LOT of physicians in FL. He did not help me or give me a plan. I've been on this journey going into my 8th month and I've been completely patch free for 13 wks and 4 days and still having restless leg issues. I rarely sleep, I found a neurologist who put me on Requip in the strongest dose extended release and it's not working. Until 4 wks ago, I had anxiety, I felt like things were crawling all over me and I had severe nerve pain. But, I was able to start seeing a pain management dr and he prescribed Cymbalta which has helped with those symptoms. I only have occasional anxiety (maybe once a week), but the nerve pain and creepy crawl T's are gone. The RLS remains though and it's pretty horrible. Carol can tell you that I also had sores break out all over my body too. If it wasn't for this forum or what I call my support group, I absolutely could not have gone through this. I had ZERO support from my dr. My family has been there but not knowing what to do. I don't know where you are in your own journey or if you're just here for info but this is the place to be. I will always be here for others too. There are too many people to name but Actiq, Leigh who hasn't been around for a while), Carol, Tom, Hope - I couldn't have done it without their advise and encouragement.

Take care and let us know if you need anything. The journey continues.....

Peace & Hugs!

Melissa

It's good to hear you're having better days Carol.. Although RLS and leg pain are not good.. Perhaps you could ask for some gabapentin (Neurontin) etc which may help with that?

I have a similar thing with regards leg pain.. Apart from my spine problems I actually sit on a pelvic bone tumour, this it cuts the blood flow off to my right leg and foot, which is freezing sometimes.

There are lots like us these days, I used to self harm a lot years ago & still have suicidal thoughts quite a lot.. I lost my Dad too almost 3 years ago now and things just aren't  the same anymore without him. He was my best friend.

With regards the drugs I'm on 200mg Marol (Tramadol) every day now along with Morphine, anti inflamatories (Celebrex,) Paracetamol, Losec etc etc.. To be honest even that doesn't touch the spinal/hip/leg pain most of the time.

Take care

Sorry to hear about your dad. I lost my mom at ten but it's easier for kids. I know if I lost my sister now it would be crushing. Just remember you have your own personal guardian angel. That's how o think of my mom

I wonder if the leg pain will ever go away I'm trying to deal with just the Vicodin. I want off all the drugs. As I say this I just went back on anti anxiety and anti depressants. How ironic.

I'm not even sure why I have the Leg pain. I have a stage 3 ankle sprain and they say another 8 months before it will be healed so I hopeful this is partially the leg pain.

We just need to all hang together her for support and share our stories so we know we are not alone and that the symptoms are real and shared by others. The healthy don't understand. This place truly saved me and hopefully we can help make your dismal days bright and hopeful. Stay strong. Carol

Orb,

Is there any way to surgically remove the tumor off the pelvic bone? Also, it concerns me that you still have suicidal thoughts. I lost my Dad when I was young too. He was everything to me and I still miss him everyday and after he died unexpectedly I didn't think I was going to make it but I have and in fact I feel like I've matured in ways that I may not have if he was still around for me to rely on. It concerns me that maybe you should ask for an antidepressant and if you're already on one then maybe it needs to be changed or made stronger. We are here for you and PLEASE seek help or come here if you start having suicidal ideations. We are doctors, but we are people who care about each other deeply. And I, personally tried to commit suicide 38 years ago and ended up in Critical Care Unit for a week. Believe me, it's not worth it. You've got too much going for you - you're here for a purpose. If you think no one cares you're wrong because I KNOW I can speak for Carol that WE care and we'll be here for you. Hang in there!!! Stay tough. Things WILL get better.

Peace & Big virtual Hugs!

Melissa

My leg pain has been off the charts. I even started crying again this afternoon. That's SO unlike me but seems to be happening quite a bit lately. I really hope this upcoming injections will help. I still haven't slept either! I can deal with that but not the constant movement. I've lost track of how many days it's been since I've slept! At least the anxiety is better! Any little thing is encouraging!

Hi Carol.. Thank you for your concern.. I am also sorry to hear of your Mum's passing especially at such a young age. The guardian angel is a good thought you have there and I will try and implement it myself. I do believe in God too though and just TRUST that everything will be ok in the end, and hopefully we'll all be together again and happy. Hopefully without pain/anxiety/frustration etc too.

I hope your leg pain will go away for you.. People just don't realise just how dibilitating pain actaully is.. It's not just the sadness it brings each day, but also the restriction in doing the things that you want to do is very frustrating indeed.

In my case though due to my circumstances.. I still live with my Mum even though I'm 49, we get on fine and are now here for each other after my Dad's passing, my Mum's taken it really bad too though and at 71, even though she's a young 71 is only just showing signs of improvment.  What I'm getting at here is that there are jobs to be done around the house so I happily do them when I can, however I only get literally 5 minutes to do each one as my back/hip/leg pain kicks off in that time, so I have to stop.. That's the frustrating bit.

Try not to worry too much about your leg pains as it really does make things worse.. I can tell you first hand that with joint/bone issue etc you can get all sorts of related pains ranging from shooting pains in the whole limb, to longer chronic type pain that actually feels like something all on it's own, but it's not.. It's the injury related pain.

Thank you again Carol and take care

John 

Hi Melissa..

I am sorry to hear of your loss also, It seems we are all in a similar boat here.

I am happy to hear that you are getting through day by day though. Geeez that sounds so simple when I say it like that, please believe me though I really do understand how you feel.. I can't say that about the suicide part though Melissa but I do hope and pray you won;t do anything like that again... We need you here

Thank you again for your concern in this dept Melissa.. Although I have actually been on many different anti-depressants previosuly and on all sorts of doses too.. The problem I have (another one!) is that I can't have some tricyclic drugs like Amitriptyline etc, as they make me have full blown epileptic fits and I've ended up in hospital before due to this.

To be honest I try to steer clear of anti depressants now as the ones I can have just cloud my already pretty clouded days due to the other drugs.

Regarding the bone tumour... I have had major surgery for that in which they do try to cut the tumour from the bone, but even 3 specialist surgeons at the Royal Orthopaedic Hospital in Birmingham couldn't remove it all as it's in such an awkward position, being attached to my hip/pelvis but trapped between major blood vessels etc... The remaining tumour was described after surgery by the surgeons as being like a rats nest in an electrical box

Thanks Melissa.. You take care too

John

No worries Mel.. I understood what you meant

John

Yes lean on your angel. You know your mum needs you and having a purpose make getting up each day a little easier. I am sure you have researched as much as you can about your condition but keep looking. Medical prpcedirs change every day and tomorrow may come with an answer

Also think about water therapy. This might be of some relief. There is also acupuncture. You get to the point you should try anything that is non evasive with potential benefit. Melissa found relief with a hot bath but only while in the bath but it's a small break

Keep a positive attitude and be greatful you have your mum and not loving alone. We can always find something positive and that is where you need your head while you search for soliution

Always reach out when you need to vent or share. Thinking of you. Carol

Go back to some of the other remedies. Hot bath with legs out of water. Cool compresses peppermint oil. You said the bath helped so you need to get some periods of relief or you will get batty.

What about water therapy. This is my newest try for a relief tactic. You also need to stretch as much as possible. The less you do the worse the pain of the tends start shrinking. Geez I'm racking my brain with ideas. Hell try them all at once. Maybe some acupressure. Search online for some of the trigger points

I wish I could be there to give you some trials of relief. It's so cold here today I think it is making my legs ache more than usual but it's bearable

Praying you get a break and real soon. Carol

Hi...I am currently tapering off fentanyl patches for the same reason as you stated above. I was on 75mcg every 48 hours but the patches were only lasting about 30-36 hours at best...then the remaining hours were just pure hell. I asked my pain management doctor to take me off of fentanyl so I'm tapering off slowly. But it's worse than I thought it would be....the patches don't last 48 hours...and now my dose is lower...so I only get maybe 24 hours that feel ok then the last 24 I'm in bed...pain is worse...fatigue is terrible...I just wish I could get this over with!!!! It's basically a 60 day tapering down process...I wish I could cut that in half!! But...I Guess when I read your comment above I related to it because you were experiencing the same thing with the fentanyl,...how Long have you been off?? And are you still feeling withdrawal??

I went off oct 4 so it's been five months. The initial withdrawal is supposedly 3 days but then you get all the pain back and if you have been on it for a long time your brain has to learn how to make dolpamine. My worste complaints are still the aching restless legs. If that would go away I would be great. The back pain is tolerable with minimal meds. Cutting down works for some. I was on 50mcg and just went cold turkey. I was also suffering from a major stage 3 sprain so it was probably not the best time

Just be sure you have backup meds. They can't just take you off with nothing for the pain. It's not easy but now I can say better than being on fentanyl and every other day being crappy

Your story sounds exactly like mine to a tee. I had tried a morphine pump and every med out there. I did not want to be a slave to the pills , the morphone pump malfunctioned and I thought I was going to die. At the time 16 years ag  it seemed reasonable that I could put on a patch and no worries for 3 days. But after 6 years on 25mg my tolerance flat lined. MY dr upped me to 50 mg that lasted 6 months so she upped me to 75 mg thats when hell started. It has been a roller coaster. Day 1 is too much day 2 I am exhausted because I can not sleep because I am wired from day one & 2 day 3 There is nothing left in the patch so I sleep for 24. It is a nightmare. So I had my dr order me the matrix patch last week and I am now cutting the 75 into 3 - 25 mg strips so I get a fresh patch each day. It has thrown me into withdrawal, but my mental clarity is coming back and the rollercoaster ride is gone. I am sleeping better. I feel calmer in a odd way despite the withdrawal. In a month or so I will cut the daily patch down to 12.5 which would be 6 pieces per patch. Be careful how you cut so that you can still easily remove the patch from the clear backing. I am doing all of this with a big cheer from my doctor . She said I was a pretty smart cookie to have figured it out as she could not write a script for a 2 day patch wear. Praying I am off this some day.soon. I have Deg Disk Disease, DISH, Chronic Fatigue Syn, Fibro, Chronic PAin Syn . I just want my life back and pray there is a quality of life left when I get there.

It does get better. I still have some issues but for the most part am over the worst. I don't sleep without unison and still in three Vicodin a day but able to work and basically have a normal life if there is such a thing. Just be ready for plan b when you are off the patch because you now of to deal with all the pain that sent you to the patch. Work on some plan of action before you are off. You are clearly on the right track and will be routing for you

Hey Carol!

I hope you are still getting better.  We have been through so much together, haven't we?  I'm STILL having RLS - BUT, I saw the pain dr Friday and they put me on Baclofen (?sp).  It has been knocking me out and I haven't had RLS in 2 nights! Yea ME!  I started getting charlie horses and muscle spasms from the pain of kicking all the time and my arms too.  But thank God for the last 2 nights.  I'm going to stay on it for now, I was thinking about doing it every other night but not just yet.

Bren - I was on Fent patch for 12 years. I've been withdrawing for the past 9 months.  Believe me when I say it's the hardest but most rewarding thing I've ever done in my life.  I didn't think I was going to make it so many times but I'm living proof that you CAN get off this poison.  I'm so much more alive, aware and able to do more things than I have in a long time.  This support group is key.  If not for them, I could not have done it.  Carol and Actiq have been my rocks for sure.  Hang in there and if you need anything we'll be here.

BIG HUGS CAROL ALWAYS!!!

Melissa

Glad to hear you are making such good progress. I think o have sciatic pain and trying to figure out what exercises are best. I can't seem to get off the ten pounds I gained and it's making me feel down. My legs just ache constantly and my hips hurt whenever I stand or walk. Guess it's always going to be something. Just staying positive and always looking for remedies. I am so thrilled to hear you have had a few good nights. We have come such a long way. Thinking back severalkmths ago. I'm great now. I have to keep remembering it's going to be a lifetime change of trials but we'll get there. Big sleepy wonderful hugs to you

Yes, I am definitely having pain too, but I honestly think its mostly from my legs moving so much, the sciatica, the cyst on my spine, muscle spasms in my legs, fibro, my weight, (I've gained being on the Cymbalta.  I lost a lot during detox but I've gained it back UGH!), lupus is pretty controlled right now so that's good.  But Fent-wise, things are good right now.  The pain doctor said I would con't having withdrawals for a while, i.e., RLS mostly and that it's definitely Fent related.  I'm thankful that she prescribed the Baclofen because this would be a totally different note to you. When I saw her Friday, I had lost track (and still don't know) of how many days I had not slept.   But 2 nights in a row? Wow!  It feels great!  My question is, do I continue to take it every night? Or, do I make it every other night? Or wait til I haven't slept in a few nights, then take it?  I don't know, but the issue is it makes me drowsy during the day, however, I've not had time to adjust to it either.  I've only had 2 doses.  What would you do????

Big hugs to you my friend!!!!!

PART II ~

PS: Wasn't that a powerful documentary?!

I would try every other day or if you can cut in half. You may have to play with it a bit so you sleep but not all the time As far as the weight we just have to start today and go forward. No sense looking back. I just start s tracking everything I eat today and then later start planning better meals. lol I already ate more than I burned today. I'll try to get some waking done tonight and get back on the negative side. I still have not seen a pain management dr. I just keep dealing and taking the meds prescribed. This cold weather makes it worse I'm always cold. Oh where is spring

Scary since Vicodin is an opioid so I'm still on bad drugs but better than fent. Hoping the RLS eventually goes away.

My neighbors daughter was just like the show. Started with pot and then off she went until she was stealing lying etc. after ten tries got clean and then slipped and od'd. Just like the show. So sad and such a horrible addiction. We understand though how pain can make you desperate regardless of how it starts

I had incidents of RLS last night so for now, leaving the Baclofen alone - just take it as is.

It makes me kinda drowsy so I'll stop here and write more later

I wanted to tell you my reasons. I had been on a pain pump that failed. And opted to not have it replaced. The was put on morphine sulphate.  Remembering to take it was hard sometimes so I always felt like I was in and out of mini withdrawals. It was psycholigically a disaster. So my primary said that the patch would end all of that. That 3 days of not remembering would be a perk. And in the beginning it was till I discovered that my body burned thru the patch within 36-48 hours. And no one as far as I have ever heard will prescribe , nor will insurance pay for 48 hour replacement. So every 3rd day I was in withdrawal and every second day was beginning the burnout. By the time I voluntarily withdrew I was on 75 mg and did not even know that I was actually high on day one. What a mistake switching was. Now I am just trying to get by with OTC's and lifestyle changes. I want a quality of life back but feel fentanyl has robbed me of that as now 4 weeks into being free of it I still have zero energy and I am praying it comes back some day.

Been on heavy heavy doze of opiods since 1980,now I ham chewing 100mcgh of fentanyl every day for the last 5 years but was on it since 1999 when they took me off oxycontin the pain is still there and I am sick and tired of all the BS so I have to stop the fentanyl cold turkey today,My Dr retired and I have no more patch or any type of meds other than about 100 lirica and a few sleeping pills,I think it may be easier to just kill myself,so sad the hell i put my wife through the last 10 years or so I tried to quit in 2012 I had a sizure after about 12 hour of f but I was in a detox center at the time but not this time No Doctor no meds ne center nothing and I live way up north no way I can get help so I have to do this on my own and the help of my wife,we are both petryfide of what is going to happen,I dont know what to do or please tell me what I should do Its at home no Doctor no clinic just me and my best friend my wife???????

You really need to be careful coming off that much medication on your own.  In fact, it’s downright dangerous!  You may have to travel to an ER or someplace like that when it starts getting bad, and you know it will.   PLEASE SEEK HELP!  Did someone take over your doctor’s practice?  If so, can you see them?  You HAVE to do something to get help with this.  Please let me know what’s going on.

Melissa