Ok so here I am. I've gotten from 100mcg to about 20mcg but this last 25 is killing me! I'm going crazy, not sleeping, anxiety and God the restless legs every.single.night! I'm sleep deprived and the pain is more intense. I'm going crazy!!!! My legs will not stop! Nauseated etc I can handle but not this jumping all the time. Does it EVER go away?
Hello Melissa7471!
First up, WELL DONE!!!!
I don't know your background and time-frame (you may have put it in another post, so sorry if I missed it. I've been a bit slack lately about reading all posts...).
But however you got to this point, going from 100mcg/hr to 20 or 25mcg/hr is (and I'm sure I don't need to tell you this!) very, very hard work, time consuming, painful in every sense (physical, emotional, etc etc) and, above all IMHO, Brave. It is a scary thing to do, especially at the outset.
One of the big issues, is that, withdrawal is so different for nearly every one. Sure, there are the "standard" symptoms to expect (mainly, nausea, vomiting, upset stomach, sleep dep, shivers, aches, pains), but of course, those alone wouldn't be bad enough, would they, so we need more symptoms (sorry, enough sarcasm!). Many of these seem to vary from person to person, some people not getting them at all (I'm not a doctor. I speak from personal experience and the many, many accounts I have heard, read, seen and been told.)
For example I had Real bad jaw-ache, which a few other people I heard had, but not all. So in short, to answer your question (anyone, please feel free to add or disagree with me if you have different experiences) I cannot answer it! (At least, not accurately.) I had leg shakes and jerky nighttime movements for about 3 months (I went from 150mcg to zero). But the last 4-5 weeks they were very mild. I was sleeping a bit again by the, and it barely woke me. But someone else I know, the leg movements went on for a year, and I believe, are still going a bit.
I don't mean to scare you or put you off trying, but I see zero point in sugar-coating things, it only leads to upset and disappointments later down the line.
So I hope my answer was, even slightly, helpful! Please keep posting. Everyone's experiences are different, and help us all build better knowledge of what's going on.
So keep posting, keep going, keep strong, you CAN do it!!!
Mark.
If it wasn't for support I have found here, I wouldn't be where I am today. I've learned so much (the most important is PATCH taping lol), but the support from people like you has been incredible. I started tapering on July 18th and while it was hard, the first 75mcg wasn't as difficult as this last 25. It's so frustrating and I'm beginning to think that if I'm going to go through all this I might as well just take the patch off altogether and be done with it! I've lost quite a bit of weight which I needed to do anyway, and like I said, I can deal with the stomach issues, the shakes, the anxiety, etc but this restless legs and arms are about to do me in. Thank you for responding. Believe when I say I appreciate it. Like you said, (;
HI Melissa. I am one that went from 125 to zero but over a years time. When my withdrawal was bad I just stayed at the same level for about two to three months. It is a big nasty change to get off this med. but I am so thankful that I did. There is meds for restless leg syndrome that you can take that I hear helps. My worst was the lack of sleep and being tired. I still am tired and have been off since July. I used a lot of physical therapy to get me thru which they really worked on my muscle spasms. I thank God for my therapist.
I am am very proud and happy for you to have come this far. Best advise I can share is listen to your body and do what you need each individual day. We don't have to die to get over fentynal but sometimes it does feel that way. You have a lot of courage, be strong on the patience side also. This will pass. I am finally sleeping at night again but it was a journey.
i am praying for you. We are a large group that practicing medicine has throw a hurdle at us while trying to help. You can do it. Keep us updated daily if you like. It helped me to know people cared and I was not alone. IN his love, Susan
Thank you Susan. I feel guilty because I've been tapering since July and my dr wants me off before Christmas preferably and no later than JAN 1. He won't prescribe after the 1st. I'm trying to decide now if since I'm already so miserable if I should just stop and cold turkey the last 20-25mcg. I'm on Requip for my restless legs and arms but it isn't working. My Mom takes Mirapex so after careful research I tried one of hers but it didn't work either.
Thank you for responding. I feel encouraged when I see people who have conquered this battle. I'm so happy you're on the upside now.
Melissa
Hi again Melissa,
I just wanted to add (and Please keep in mind, I am NOT a dr. I speak from my own experiences and those of people I know, or know of...) i do think, and I'm happy to stand corrected, since as I said, everyone is different, that going "cold turkey" on the las 25mcg may not be a good idea. It sound to me, that your tapering method has served you well so far (I mean in relative terms. I'm sure it has not been 'any fun' and cold turkey, even at this point, could be even more unpleasant for you.
You have just over a month left - until Jan 1st - so if you've come this far, why not do the same for just one more month? You could taper, for example, the last 25mcg into four, one-week increments; this is quite a 'steep' curve, but maybe it will be better than stopping 'cold turkey' ? Just something to consider.
Please don't feel you have to answer if there are personal reasons, but I asked myself, why is you dr so fixed on stopping you, right on 1st Jan? They should know these things take time!
Do think about this. Or maybe you could keep some final 25's in reserve, try cold turkey, and return to tapering the 25s if things get too heavy? These are just my thoughts. Whatever happens, as other people have already said, do keep posting, every day if you need/want to, and listen to your body. This is a @&£@! to get off of completely, but it can be done, stick with it!
Mark.
Hi Melissa
I was on Fentanyl for 18 years. The last part is the hardest. There is a 12 mcg. I'm in horrible withdrawl from fentanyl, Lexapro and Klonopin all so not sure which is which but I'm completely bedridden suffering with excruciating symptoms. Hang in there and go as slow as possible.
Hi Melissa WELL DONE You have put up with so much and supported me when I came off. I hate to say it but I would suggest one of 2 drastic actions.
1. Quick taper to 18mg-12.5mg-6mg off at each change
2. Take it off completely.
Which ever you choose, get something better for the restless legs and some valium or a sedative but only a small prescription of say 12 tablets. You will be off in time to enjoy Christmas.
You are in protracted withdawal which is HELL. I had that and it was why I tapered my patch quickly over 10 days after the longer withdrawals off the tablets and ongoing withdrawals. The worst symptoms mprove after day 3. Make sure you have plenty of Loperamide and stay hydrated. I noticed a big difference by day 10 and can honestly say it was a mental thing of wanting a" feel good factor". I know everyone is different. I didn't want the protracted withdrawals MY CHOICE that's why I jumped so quickly and with hindsight I would have done much earlier. Why didn't I ? Because I didn't get enough support and reading everyones exerience including yours, neither have you had the support you need.
It's difficult, it's tough but it's do able. You have set your mind to do it so you will get through this. I was surprised at how quickly the withdrawals do go once I was off completely. At the time I though the first 30 day went slowly because was so aware of it and wanted to do so much. Lack of sleep was the biggest issue but it does resolve. My Oncologist was furious at me being taken off Fentanyl as my pain is for life due to radiation damage. He seemed to be the only one aware of cutting the appropriate patch. My drug councillor at my last meeting wanted to know why I refused to go back on Fetanyl when offered it !!!!!!!!! Simple I am not putting myself in that position again. Everyone who is put on Fentanyl has pain for life. I am now going to start a 12 week course for pain management.
I appreciate everyone is an individual. My solution may not work for everyone. It is only one view point. It it is not neccesarly the correct one. The one thing I am correct in is that Doctors are not doing the best by their patients, they lack insight and knowledge of Fentayl withdrawal and do ot give enought support to patients doing his. Either psychological or phyical support. Patiets undergoing detox from Fentanyl should be offered the opportunity for inpatient treatment. Individuals on Fentanyl often have complex heath problems and require ongoing support.
I wish you well Melissa and anyone else battling this demond drug. Let us know how others are doing who were trying to get of this drug in the summer. It seems the best support comes from this site.
A great big virtal hug to you all. xxx
PS Mellisa, If you suffering at the last hurdle of this protracted withdrawal, blog here daily, everyone will give you the support you need to see you through this. Everyone will have their own unique experiences that will help. No one is right or wrong. We will support you every step of the way, whatever you do. You have a deadline to make, not off your own choosing ( Dr Dictator's) and need all the support that is empathetically given here from the heart of fellow sufferers. xxx
It's SO good to hear from you! I've wondered how you've been doing. I'm so glad you're totally off and doing well. It gives me hope. I have been thinking of just not putting on another patch, in fact, it's due today. Being already in hell, it seems logical but I'm soooo scared Actiq. I need to make the decision today. I do have good news - I was able to sleep for about 7 hours last night. It makes me feel like I'm ready to continue the fight. Earlier last night and yesterday I was ready to throw in the towel. My MAIN problem is restless legs and it also affects my arms. My Mom suffers from this and after watching her I've developed almost a phobia. And now, here I am. I've always said (in jest) - "if I ever get RLS just give me a gun." Again, here I am. And what it's doing is making my Lupus joint pain really really bad. I have 9 Lortabs to last me the rest of my life and I'm trying not to use them - BUT - the last few days I couldn't stand the pain!!!!! SEVERE joint pain and jerking! Like I said, I can deal with vomiting, diahhrea, no sleep, anxiety and the rest, but not RLS. I do have Requip my dr gave me but it's not working. I've increased the dose slowly but still not working. How much worse can this get Actiq? Be honest with me. I need to make a decision today....
BIG HUGS!!!!
Melissa
To my knowledge, there aren't any drs on here LOL! If there are, they haven't the guts to show themselves. I know for a fact that I could not do this without the support I find here. I haven't posted for a couple of months til now, but it's been so bad. My dr wanted me to do a taper like, 100 to 75 to 50 to 25 and off in a monthly basis!!!! Thank God I found the people here and came up with a better plan and was able to convince him!!!! BUT he wants it done by the first. After this is over, I do plan to find another physician. It's sad really because I've been with the same group for 30 years. My doctors and have and gone (this is dr #3 for the past 10 years), but I've stayed with this practice. But what I'm looking for I may not be able to find - a dr that treats EVERYTHING and doesn't farm you out to specialists. I already have a Rheumatologist, Podiatrist, Infectious Disease, Eye dr, Dermatology, Neurology. Now, he wants me to see a pain dr. The list keeps growing. I'm thinking, why the heck do I see him for then???? My Mom's dr treats everything but he's also getting ready to retire...
I'm sorry - just venting. I've been chatting with Actiq - we go back a ways and he's suggesting a quick taper or just taking it off. I need to make a decision today. So I'll keep y'all posted.
Thanks for everything..,
It sounds like we're in the same condition. I'm already on Clonapin but never heard of Lexapro (just looked it up). Can I ask why you're coming off Fent? Whatever the reason, we have to find a way to keep going.....and we will!!!
HEY 7 HOURS SLEEP IS WONDERFULL, I haven't had that in 4 years. Well done. You get hyperanalgesia initially and the pain will settle. Don't be fulled by your brain that this pain level will stay or all the aches you feel will remain. It's your brain wanting more Fentanyl. Yes we are all DEPENDENT, not addicted, and it's the brain being dependent on Fentanyl filling the feel good receptors in our brain, but they will be empty till you start to ptoduce your own again. I can honestly say my pain is only a little worse without the Fentanyl and bearable, so the Fentanyl was not wonderfull, it just made me feel good and made me feel I had energy. You shouldn't get much worse. Make you decision today to stop.
I was at the stage you were at which was why I cold turkeyed from the oral fentanyl 4x day then did the super quick patch taper. Keep the last patch on for a week (Someone here advised that so I did or till it falls off) or keep your current patch on. Surprisingly apart from the gross diarrheoa, sweats and not sleeping it didn't get any worse. Honestly. Stay at home the first 3 days in bed on the sofa with blankets, watch comedy movies, again advice on here which I took. It's comedy to make you laugh, to raise your setonin level and fill these feel good brain receptors. After day 3 it gets better. So it's either put up with your current state for a lot longer or just jump now and what you are suffering will end sooner. It's the fear of the unknown that holds us back. The fear of will we cope? With hindsight I would have jumped a lot sooner to get it over and done with. For me the final jump was not the worst, it was cold turkeying the oral Fentanyl/Actiq. The only other thing that happens and will probably surprise you is in the 2nd/3rd week I had 2 bouts of weeping. Real crying for a few hours, what was I crying for I do not know. I was just so sad then like the switch that turned it on turned it off just as quickly. I had been warned about this by a drug councillor and it did surprise me.
Do I feel like its only 3 months ? No, it seems much longer, so no I don't miss it and I have had the opportunity to have it again. Do I want it again? No.
Try to have someone with you. I was on my own as my partner had died the previous year. It's much better to have someone look after you and give you a cuddle when you need it.
Wishing you well whatever your decision is. Only you can make that decision and keep in touch daily to let us all know how you are doing. What you are doing will inspire others too and help them too.
I would go back to your Dr to get something for the RLS and something like diazepam to help with the final jump off Fentanyl. This is not an unreasonable request for 12 tablets to use as required not for regular use. I went to my Dr with a long list of what I wanted and the only thing I didn't get was Clonidine. Do not appologise for requesting drugs. It's the Drs who put us in this situation.
Remember its like saying good bye to an old friend. Fentanyl has been part of your life for a long time, you'll miss it to start with, but as your life improves it will dissapear into the background and suddenly one day you'll realise its out of your life for good.
An enormous virtual hug and warm wishes xx
Yes, I'm not planning to put on another one. If I'm going to be this sick I might as well go for it. Another thing that's happening is I've developed a bunch of sores on my chest, stomach and one on my arm. And they're leaving scars. My wife and I are thinking that it's just another way the toxins are coming out. I also sneeze a lot. But have you heard of the sores? They start as pimples but stay red til they dry out and scar.
Hi Melissa, Well Done. Stck with it> I never heard of sores, but my hair has thinned dreadfully, one other person on this site also had hair falling out . Yes I got sneezing, but mainly if I ran short of oral Fentanyl. It was strange sneezing where I would sneeze about 7 times in a row uncontrollably then it would stop. Are the sores where the patches were?
Hello Actiquser AND Melissa,
Just though I would add, I had sneezing in a BIG way. Like, 5, 6 or 7 or more at a time, and they were 'dry' and stinging. Sometimes the sneezing woul actually wake me up (if I got, like, 30 min sleep that is...) this is very normal and will pass.
I didn't get the sores, but, like Actiquser I did notice a thinning of my hair (and I don't think it's just that I was reaching 40 yrs LOL).
Lastly, as mentioned already, I had slightly different symptoms if I was running low on patches, rather than completely without. Of course, if I was completely without, they were worse, but also just different. Weird... we are all different and unique human beings!
Melissa you are BRAVE and will do this. Keep going. Keep posting. And GOOD LUCK.
You have awesome support on these forums.
Mark.
Hello Actiquser AND Melissa,
Just though I would add, I had sneezing in a BIG way. Like, 5, 6 or 7 at a time, and they were 'dry' and stinging. Sometimes the sneezing woul actually wake me up (if I got, like, 30 min sleep that is...) this is very normal and will pass.
I didn't get the sores, but, like Actiquser I did notice a thinning of my hair (and I don't think it's just that I was reaching 40 yrs LOL).
Lastly, as mentioned already, I had slightly different symptoms if I was running low on patches, rather than completely without. Of course, if I was completely without, they were worse, but also just different. Weird... we are all different and unique human beings!
Melissa you are BRAVE and will do this. Keep going. Keep posting. And GOOD LUCK.
You have awesome support on these forums.
Mark.
Melissa,
I was just looking at the issue you mentioned about sores. Apparently some people have had rashes and similar in fent withdrawal. I think what you and your wife said about toxins may be spot one.
One thing: make sure these are not the start of"pressure sores" where perhaps you have been lying or sitting still, as they are nasty. But these only usually happen at the point of contact between skin and say, bed or couch (elbows, thighs buttock area etc.) hope you don't mind me being blunt, but as I said before, sugar-coating, and mincing words, and I don not get on!
Best wishes again.
Thank you! No, it's nothing like bed sores. I can't stay still long enough because of restless legs and arms 24/7. It's that bad. BUT today is better with that symptom. I'm just pukey today and a little restless legs. Plus, the sores are all over my upper chest, shoulders, flanks and stomach. They aren't real big. But I'm thinking again it's just toxins screaming to get out.
Actiq & Mark -
Don't know what I would do without you guys! Actiq started this journey with me in July so we've been at it a while...but now that I'm down to the wire you all are my rocks! Thank you so much. Also a girl started a new thread RE depression. Let's keep her positive. Today for me is good! Not too many problems except I'm probably the only one in the U.S. who lost weight over the holiday!