Posted , 13 users are following.
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?
0 likes, 120 replies
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Pointer99 melissa7471
Posted
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.
melissa7471 Pointer99
Posted
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, (;
Pointer99 melissa7471
Posted
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.
melissa7471 Pointer99
Posted
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..,
melissa7471 Pointer99
Posted
Hey Mark -
Just checking in. Things are getting better but inconsistently. Still having restless leg issues, not sleeping well but better, anxiety is still an issue and sometimes I feel like a thousand mosquitos are biting my arms at once. I haven't heard from Actiq in a while and I'm a little concerned, but I know he's in the middle of a 12 week course of PT. I've written to him a couple of times with no response and that's very unusual. Anyway, I am sleeping better but my legs have kept me up all night tonight. It's 4:45am here and not a wink of sleep BUT I slept last night and over the weekend. The anxiety is still very disconcerting. My whole body still vibrates from time to time and I can't stand to be in the car for any length of time. I'm telling you - I want to IMPLORE people to stay away from Fentanyl! As you know withdrawal is nothing short of brutal. The people in this group have been my lifeline. I don't know what I would do or have done without all of you here. I'm looking forward to the day when I can say it's finally over, but how much longer will it take? I'm around 7 weeks(?) completely off.
Anyway, I hope you are doing well and had a nice holiday!
Take care,
Melissa
carol77581 melissa7471
Posted
Hi Melissa and so we continue to trudge forward trying to get to some normal means of life without jumping out of our skin. My restless legs are a little better. It's not constant and I found that non of the restless meds work. I don't sleep but some anxiety meds with a unisome at least let's me rest comfortably even if not really asleep.
Problem is I then drag the next daySwitching to a computer to continue conversations. Back shortly. Carol
carol77581 melissa7471
Posted
50mcg patch for 18 years and on 11/3/16 I went cold turkey while out on medical leave for a class 3 ankle sprain with torn ligaments and tendons. I thought while on percocet and vicoprofen (vicodin but with ibuprofen) I could get off the patch as they had given me a walkign boot and though all wold be good. What was I thinking.
1. Sleeplessness, agitation, restless legs, severe pain in both legs and basically nerves firing all over the place so I never knew what hurt the most.
2. Was put on anti-depressents, anti anxiety and roprinole for the restless legs. Nothing worked except a combo of both Perc and Vics alternating every 2 hours.
At about 8 weeks I found the restless legs became only a 2-3 time a day occurrent until my other meds kicked in. At least it was not all the time. The stomach pains subsided as did the diarrhea.
Next came tiny fluid filled blisters all over my body. they would itch and then break open. They reminded me of tiny chicken pox. I believe Melissa and I had the same experience.
Desperate and searching I found a few things that helped. I have a pepperment and eucalyptus spray, homeopathic, for joint pain and it helped my legs. Not sure if it was through diversion or really worked. I also use ice on my feet. I did notice that hot baths, although they feel good, really set off my restless legs beyond help. Now if I have to soak for my back, the original cuase of fent, I now hang my legs over the side of the tub.
As far as sleeplessness, you need to exercize. I realize this is difficult for many of us have the underlying cause of using fent to now deal with but no matter how little, you will get stronger. As you get stronger do more and you might find yourself getting 2-3 hours of deep sleep. Not a lot but enough to keep you from going crazy. I tend to sleep between 10 - 2 for 2 hours. Then I can dose again with the help of sleeping pills.
Magnesium and CoQ10 help rid the toxins and take that multivitamin for the energy.
Everyone is doing such an amazing job with determination. As I made progress I decided to make this more challenging. I quit smoking. I know that effects sleep so I thought I had to try one more thing and try to get healthy. Please keep sharing your thoughts and know we are all praying and thinking of each other. Virtual hugs are here for each of you every day.
melissa7471 carol77581
Posted
Carol,
I am soooo glad to hear from you! This has been and continues to be quite the journey. I'm really concerned about Actiq though. Haven't heard from him even though I've written. He's been with me since July. Hope he's ok. Anyway, like I said, things are inconsistently getting better. My stomach has straightened out and I am no longer getting the sores but they've left me scarred
My biggest issues are the RLS, and anxiety caused by feeling like things are crawling all over my arms and legs. I'm taking homeopathic stuff for the anxiety as well as sneezing! Still sneezing and running nose several times a day! Sheesh! Did not sleep at all last night and my legs are STILL going (almost 14 hours straight) and this makes the pain worse. Also, I've just started chair yoga ( I love yoga but can't get on the floor right now), so I'm hoping that will help. Let's try to stay in touch. I still need this forum.....
Big hugs!
Melissa
carol77581 melissa7471
Posted
Good for you. I'm happy to hear you are doing something to help you. I also found that lots and lots of stretching helps with the legs. I use a belt and sit on the bed to stretch those calfs and feet. It's a problem for me with the separate ankle issue.
I wonder why Actiq is not responding. I know he was going into a pain management program and hopefully he did not have to go into a rehab facility. It really sounded like had kicked this but as I have found, the original pains returned and now have to figure out how to deal with that.
One thing I know is I have to move every hour and take a walk. My employer doesn't like it but it's what I have to do or I'm frozen and in agony and I have over an hour drive home at the end of the day.
If you ever start the pain management, I'd love to hear what they suggest.
Best to you, Carol
melissa7471 carol77581
Posted
Yes, Actiq was to start a 12 wk course of PT so I'm thinking he's just busy with that. I see the pain specialist for the first time on the 30th so I'll let you know how that goes. I just saw my PCP and he put me on Hydrocyzine for the creep crawly's and anxiety issues from that. I wasn't able to do much yoga today because I couldn't sit still. Will con't to try. Yes I'm up and down and everything in between. Sometimes I can't sit, lay down or stand up so it's awful. The only thing I can do is get in our jacuzzi if I'm not already on fire. Sometimes it works, sometimes it doesn't. We won a basket at our local health food store and in it is something called Sedalia for hypersensitivity, anxiety and nervousness. I've been taking those and again, sometimes it helps sometimes not. So I guess the main theme for my journey right now is inconsistency. I will say this - there are times when I really want to go throw a patch on but I don't and will never again, but your mind plays games with you and you think this could all be over if I would just go put a patch on but I know that's definitely not the answer. Thank you for your responses it's good to know somebody's still out there and I really appreciate it.
M
carol77581 melissa7471
Posted
I had a big turning point at 5 weeks and then again at 10 weeks. Maybe by 15 I'll be normal. One can only hope.
melissa7471 carol77581
Posted
Fingers crossed for all of us. I've been awake since Wed morning....
susan56123 melissa7471
Posted
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
melissa7471 susan56123
Posted
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
thisismylife melissa7471
Posted
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.
melissa7471 thisismylife
Posted
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!!!