Getting of Fentynal...do you hate how it makes you feel??

[timetogetbetter]

I have had two failed back surgeries, spinal stenosis, degenerative disc disease and some bulging discs. I've been on the Fentynal Patch since 2003.  Started off at 50mcg and was on that dosage for three years and then in 2006, I was put on  100 mcg.  Also prescribed percocet 10, and Klonopin and a antidepressant.  I want to get off the patches.  For one thing, I don't know where I can go from here.  I've been on the same dosage for over four years and for some time now, it really hasn't  helped  like it used to.  The first day of changing the patch is good but by the end of second day and all of the third, I feel like crap and that I'm having withdrawl symptoms.  I hate how they make me feel.  I feel depressed ALL the time I feel so helpless and alone. I feel lost and just unhappy. I feel like the world is passing me by and I just wonder if the patch especially is making me feel this way.. The meds I'm on for depression don't seem to work and I think it's because I can not FEEL anything with all the narcotics that I am on.  I want OFF!!! I am contemplating just doing it cold turkey and having my family help me get through the three or four days of hell that I know I'm going to endure.  I don't know how bad it is going to be buy  I know that by  the third day of needing to change my patch,  withdrawls are bad such as the sleeplessness and the restless legs and I even get restless arms.  Then sometimes I feel like i just want to shake my entire body!!  I'm scared to death.  I just feel like I don't have a life. Almost ten years of this and I am just TIRED.  I don't even know what my pain really feels like because not a day goes by that I'm not treating it. So how am I truly supposed to know what my pain is now???  I do not misuse my meds.  I don't take them early, I don't change my patch early, I don't take too much infact, I only take percocet if I truly need it. Now I feel like I am rambling.  I just feel like I'm living in a fog and I am so unhappy.  Does anyone else know this feeling??

[CiscoF]

My wife is up against a wall right now as well.  She has been on 100 patches for last 4 years from the 50 patch she started with 3 years prior.  The issue that crushes me is trying to keep her spirits up and support her through this.  

In the coming  weeks we are suppose to reduce her to 50 and then off completely.  The biggest issue I have (apart from the obvious nightmares of withdrawals and all that comes along with them) is understanding what to offer for hope to her regarding her pain.  Her pain is real at whatever level.  She had a total disc replacement 4 years ago and a fusion last June.  They want to do another fusion through the from and back in or around June.  The pain she experiences is real, so how do you manage it besides chewing on leaves from so far away mountainside?  I am so lost and feel trapped with her, and she is only 32 dealing with this since age 24.  

My name is Frank

[timetogetbetter]

So wonderful that you are. Cancer free!! I start my weaning off this junk right after Jan. 1. I know that I am going to be able to do this because I've been praying and with God, all things are possible!! My family is behind me 100 percent behind me (after having a family meeting) I can not wait to feel  "alive" again!! Please keep in touch!! Hope you add me as a friend...can always use a new friend! :)

[wildog]

    I was never on fentynal any where's near that long and only 7 weeks on 75's but my breathing was so shallow I was concerned and then 1 night I started hyperventalating and almost called 911 but didn't and then my breathing got better. The next day I called my doctor and asked if I could just stop using the patch and what to do if I felt W/Ds starting. He told me to use my lortab( I was on a feeding tube after cancer surgery) if I felt W/Ds coming on. Lucky, for some reason I had no W/Ds which I consider a miracle and am now weaning myself off of morphine that I have been using for pain and sleep. It was well over a year after quiting the fentynal that I starting using the morphine and so far the weaning has not been to bad but I know I won't be as lucky this time since I tried CT and on the 4th day all heck broke loose and I took some to stop the symptoms. My doctor would probably give me the prescription due to my cancer and the trauma it has done to my body ( I am cancer free at the time) but I think I would rather just be clean of heavy drugs. Aloha,Wildog

[timetogetbetter]

Thanks for your comments and your words of encouragement. Let me be clear, I may have only mentioned prayer once but I pray every day and night.  The Lord has been so good to me and my family and without him, this ordeal I am going through would be so much worse. I never thought about it....confirming just how much I have missed but you know, I know that I will and It will be a sad day but even now, I do realize how little I listen when I'm being spoken to. I hate that too.  I can not wait to get off of this stuff. I have my questions and concerns ready for my Doctor.  Hope he is supportive and helpful in this endeavor.  Thanks again and for the scripture.

[calebsrme2]

The "time to get better", has already started. The upcoming meeting with your doctor is the next important step, organize your thoughts and questions in a written format that he or she can understand; take 2 copies of the list so that both of you can review it together. Also take a copy of all these postings, It may help the doctor to see the comments from other people with similar experiences. If if you feel your doctor doesn't get it, think about making a change. In a recent post you said "Today has been a sad day for me. I feel like the last 8 years has gone by and I missed nearly all of it. It's scary for me because I don't feel like my family is behind me in this. Not that they don't care or don't love me but they don't know what I'm going through...especially the depression so they do not know what to do.  Scared to death."  Has your family read these posts? It may help if they do. Keep an open mind to checking in at a rehab center, if you detox at home your family needs to know what you are going through and how to help you. Can they tolerate the stress and do they have the time to give you the caring support you will need? Another advantage with a Rehab center is that you will be able to stop several drugs at once.
Jaybay addresses Klonopin.{that group of anxiety drugs,} they are extremely habit forming and difficult to stop. If you decide do the detox at home, just stop one drug at a time. The Klonopin might actually relieve some of the anxiety while weaning of the Fentanyl..  
When you break through, you will confirm just how much you have missed during the 8 years. You will find that because of your current preoccupations, frame of body and mind, you rarely listened when spoken to. When humans go through what we have, we are not themselves, not even close. After you cross back to life again, you will definitely enjoy more alertness, awareness and sensitivity. you might be surprised how less pain medication you will need. Let us know how it goes with your doctor.
Jaybay did indeed send you a beautiful poem. I read all the postings on this page, you have a very good support base that you communicate well with. Thank you your words of appreciation. If my recollection is correct, you mention Prayer at least once. You might enjoy reading 2 Corinthians 4: 6-18. This link takes there
{http://kjv.us/2_corinthians/4.htm}
                                      .Keep the Faith.
  

[timetogetbetter]

Thanks for the poem!! That is so awesome and rings so true!!  Today has been a fairly good day for me.  As for the Klonopin...I only take one if I truly need it.  If I took 3 a day I would be a zombie so no, I don't think it's that.  I feel really bad on the last day before it's time to change my patch.  I feel depressed all of the time and have no ambition but on that day, it is a zillion times worse. I just think my body is so used to it...I've been on the same dosage for almost five years.  Just so sick of it.  I know I have legitimate pain but I honestly don't know how it feels without being on something to help the pain.  I feel forgetful and distracted and weepy a lot too.  I cry about everything.  I have had some bad stuff happen with my family.  Lost my dad almost two years ago.  My mom has Alzheimer's,  My financial situation is changing for the worst.  mental illness runs in my family so I think I'm getting hit from both directions.  I pray alot.  I have a good husband and my family is supportive but they just don't know what I'm going through.   I am going to try to live in the moment and I'm just waiting for the day that I am off of Fentanyl for good!!!  Thanks again. Please keep in touch.

[Toooldforthisstuff]

I love that poem!

Timetogetbetter, I was on Fentanyl for 6-7 years, 75mcg.  My story is so much like yours that it's weird!  I hated the way I was and didn't even know if i still hurt anymore.  I got fed up and decided to drop from 75mcg to 25.  That was the hardest part, I didn't sleep fer crap for 4 nights and had hamstring cramps waking me up at night when I could doze.  I prayed that i wouldn't get the pukes (I can live with the *****, that's what Imodium is for! lol)  God was good, I was mildly nauseous, but it helped if I kept something in my stomach.  And Benedryl helped me sleep.  The last part, the 25 mcg was the easiest.  I was exhausted and felt like crap for 3-4 days, but it wasn't anything i couldn't handle.  The part i hated the most was afterwards...I had no motivation to do ANYTHING.  Reading everyone's posts on here helped me enormously.  I knew if I just hung in there, it would get better.  And it has.  It's been 6 weeks now and my motivation is coming back good just in the past week!  But the best thing is...I feel more like ME!  And I've been able to handle any pain with Therma Care patches and Aleve.  It is SO worth it, you can do it!!

Christy

[Jaybay]

You know, I'm wondering if it's actually the fentanyl that is causing the worst of your trouble.  Klonopin may be the real problem here.  It's a benzodiazapine drug like xanax and valium, and a pretty darn stout one.  Klonopin is used to treat anxiety and seizures.  Some of the listed side effects are depression and unusual thoughts or behavior.  You may be in a vicious cycle of the klonopin causing depression and anxiety, so you take more to try to calm it down.  The more you take, the more anxious you get and so on.   Have you been taking it for the same length of time as the fentanyl patch?  It's something to think about anyway.  You have to wean off klonopin very slowly, so make sure you talk to your doctor about it.

I know it's not easy, but for now you need to live in the moment.  Try not to stress out on the past and try not to forecast what you think your future will be and make it a self-fulfilling prophecy.  You can't change the past, so there's no point in worrying about it.  If you take care of today, tomorrow will take care of itself.   Try to make time your friend instead of your enemy.  This reminds me of an ancient Sanskri poem that I find to be very wise:

Look to this day
for it is life
the very life of life.

In its brief course lie all
the realities and truths of existence
the joy of growth
the splendor of action
the glory of power.

For yesterday is but a memory
And tomorrow is only a vision.
But today well lived
makes every yesterday a memory
of happiness
and every tomorrow a vision of hope.

Look well, therefore, to this day.

[timetogetbetter]

I am still on my patches. I go see my doctor next week.  I am going to tell him that I want to get off of the patch and see what he suggests. Today I feel as if I am the only person in the world feeling this. I hate that I have zero energy. I don't care to get up and do anything. It seems like everything I do almost is a struggle just to do it.  I have legitimate pain and I am scared of what I'm going to feel like with out anything to help.  But the way I feel on the Fentynal has to be worse. I could sleep all day and then all night.  I cry. A lot.  I just wonder if I will ever feel like getting up off my rear and doing something...anything.  I feel really alone. Today has been a sad day for me. I feel like the last 8 years has went by and I missed nearly all of it. It's scarey for me because I don't feel like my family is behind me in this. Not that they don't care or don't love me but they don't know what I'm going through...especially the depression so they do not know what to do.  Scared to death.  It's like I'm waiting for my life.

[calebsrme2]

When I read your post, I thought I was reading my story, it so similar, even the detail about the failed cervical surgery.
YOU CAN AND WILL DO IT! I MADE IT AND SO CAN YOU, WITH THE SUPPORT OF YOUR FAMILY, DOCTOR AND OUR HEAVENLY FATHER
You have better control than I did, I was taking 1-100, 1-75, plus max dosage of Vicodin, Cymbalta and xanex. I went to replacing the patches from 3 to 2 days and eventually from 2 to 1 day. I had to stop the train, I had been to the emergency room twice with no detectable pulse, the second time I knew I had to detox NOW. It was too late for me to do it at home; I went to a detox center. Going to your doctor and implementing your plan makes good sense for you.
I am attaching my story, it might help. It feels good to have a clear mind, free of all the side effects. Your family will very happy to have you back. Keep hoping and cling on to your faith.
====================================================================
ANYONE EXPERIENCING WITHDRAWALS FROM OR ABOUT TO START ON FENTANYL
10/30/2010
As I read through these postings, it reminds me of my own experiences. Multiple major surgeries, an MRSA infection and more, were the reasons that I found myself taking all this pain control medications. I also went through the various stages they lived. From when about 8 yrs ago, when my doctor suggested Fentanyl patches to augment the Vicodin, to  years later when I was taking 1-100 and 1-75 Fentanyl patches every 3 days, 2-750 Vicodin every 6 hours, and I mg of xanex every 4 hrs .
I reached a point when it was not the pain, but the dependency that led me to start taking the Fentanyl every 2 days, then every day. If I did not wear the patches, Spasms, seizures, and severe anxiety would set in. I would also get cold sweats, heat flashes and my face would get distorted and get flushed. My pulse rate would get very low. My wife and anyone that happened to be present became alarmed at what they saw. I saw the frightened look in my wife; her eyes as if she was horrified. Several times I had to be transported by ambulance to the ER, once my pulse dropped so low and it could not be detected. They called a code blue {or red, I am not sure}. I finally realized that I had zero control and that instead the drugs had control over me. I decided to go to a detox clinic after release from the ER. I stopped taking Vicodin, xanex and Fentanyl.
Six days in rehab is not near enough time. As difficult as it was to be there, you need to stay longer or have a counselor or a mentor to help you get control of your emotions.
Once you check into rehab, no one from the outside can visit you. Take a pair of inexpensive but warm gloves. {You may need to cut off some of the glove fingers}, a sweater might be needed. Take all the medications in their bottles; they will give you some of the meds, such as blood pressure and others that you need to live.
During rehab you will go through a roller-coaster ride, both mentally and physically. You may go through chill spells then hot spells. Take a pair of inexpensive but warm gloves. {You may need to cut off some of the glove fingers}, a sweater might be needed.
Nausea and dry heaves, spasms and seizures will be part of it. The mind goes on a unreal unpleasant cycle; from reaching places in your mind that you forgot were there, yes even suicide. Those Thoughts went through my mind more than once.  After 6 days I went to a Rehab clinic for cervical spine therapy and general strengthening exercises. The side effects from withdrawing took weeks to substantially subside.
As you recover you will notice increased clarity and alertness. You will be more in touch with your inner self.  The only pain medication I take is Tramadol. Have someone gather and dispose all the medication you withdrew from. Early on, in desperation I may have taken a xanex if it had been available. Don’t take a chance, get rid of them. Our daughter got rid of mine before I came home
If you have not started taking Fentanyl, don’t start, if you just started, [few months} you should be able to wean off it. Develop a plan with your doctor to gradually withdraw. It is likely you may experience some of the side effects. If you are experiencing symptoms similar to mine, you need help; you more than likely need to check into a behavior modification center.
What I wrote is a rendition of my personal experience, yours might less severe. I wrote because I see some readers going through the stages I went through, some thinking of starting, some excited because the Fentanyl does ease the pain so well, others are already experiencing side effects and wanting to stop.  Stop and read all postings here and other sources. Whatever you do, proceed with extreme caution you have the benefit of having read the experiences of all the postings.
Without the love and support from our Lord, faith hope and from my family, there is no way that I could have survived what I went through. Thank you Jesus!
                              

[timetogetbetter]

Thanks so much for your words of encouragement and all the great information!  I am going to take your advice and when I go to my next Doctor appt., I am going to tell him I want him to take me off of this stuff gradually.  I am so scared of being sick but I keep telling myself that I can do this.  I am on the pouches with the gel so whenever I get a lower dose or whatever my doc decides what to do to get me off of this stuff, I will ask for the Mylan patches.  I have had them before and it seems like they did last the whole three days in retrospect.  I just hate the way I feel.  The depression and anxiety is the worst part and I think it is this patch that my antidepressant doesn't work for me.  I could be wrong.  I know it isn't the entire reason I have the depression.  Mental Illness is a genetic trait in my family.  I wish it would all just disappear. I wish I could turn back time and tell the doc that I don't want the patches....hind sight huh??  Well thank you for everything!! I hope that you keep in touch.  This site has really been very good for me.  It's nice to know that I'm not the only one out there and that there are people who care enough to write to me.  Glad we are friends!

[Jaybay]

PLEASE do not cold turkey off the fentanyl patch.  I am in pain management, on the patch, and currently tapering off.  I do think that the lack of energy and motivation you're experiencing is due to the drugs.  Don't worry.  You're still in there and the real you will be back.

The highest dose I was at was 75 mcg about 3 years ago.  Like you, I said, "to hell with this" and asked to drop to 50 mcg.  It was pretty darned ugly.  I've never barfed so much in my life and RLS doesn't begin to describe what happened to every muscle in my body.  I stuck it out though, and stayed on the 50's.  I finally screwed up the courage to drop again, and I'm now down to 25's.

Are you using the patches that have the gel pouch?  If so, that may be why you are experiencing withdrawal by day three.  I had the same problem with that kind of patch.  Worked fine on day 1, started wearing off on day 2, and started withdrawal on day 3.  It was always worse in the summer months.  Heat makes them dispense faster, which is why you don't want to do something like sit in a jacuzzi for a long time with the patch on.

Check pharmacies in your area for the Mylan generic.  The fentanyl is embedded in the adhesive, and it just looks like a clear piece of tape.  For me, it sticks better and actually lasts the full three days.  I think you'll start feeling better if you can get off the roller coaster ride of withdrawal.  Depression and anxiety come with the territory where withdrawal is concerned.

One last thing, I don't consider you an addict.  Yes, you are physically dependent on opiates.  That's a normal part of opiate therapy.  Addiction is a completely different animal where the patient abuses medication in spite of negative consequences.  From what you write, you are not abusing your medication, nor are you displaying addictive behavior.  Please talk to your doctor about all this and ask him to help you slowly taper off your meds.  You may be surprised to find that you really don't need it anymore.  After so many years of everything being masked by pain meds, it's difficult to say exactly where your pain levels are at.  Just do it slowly and with your doctor's help.  Good luck!

[livngr8ful]

I was on the duragesic patch after my first fusion.  It to me is the worst drug possible.  It made me feel like he!! when I was on it.  Adn the wd's were the worst I have been through.  If ya want off of them maybe talk to your doctor about a different medication, that would be an easier taper.  Or one that the wd's are a bit less.

[timetogetbetter]

So you think I'm right and the meds are making me feel so bad?? I feel like I'm just going through the motions. I do only what I have to. I have no get up and go. Will this change?? I hope so. All I can do is cry. I truly have no life. I don't go anywhere, do anything (not very often) the patch along with some other things that are going on in my family have got me beat down.  Will I feel like living again once I'm off of this junk? Granted, I do have legitimate pain but I can't go through life like this anymore. I'll have to deal with that when it comes I suppose. I'm 41 years old and I have no life. Pathetic. I'm not trying to have a pity party but I am speaking the truth. I actually got a great job a few years ago and gave it up because I was tooworried about my meds. Like, when it's almost time for me to go to my doc appt. And get refills, it's all I think about. What if he doesn't give them etc. I want to enjoy living!! I'm dieing in the state I am in now. I feel like I've been robbed of the last 7 1/2 years. I am addicted..,and my doctor did this to me. I thought I was doing whats best for me and he was too but now I don't think he cares what happens to me. I'm not getting off one drug just to get on another either. That is pointless. Maybe once I'm off the patches, my antidepressants will really work and I'll really want to live again??????  

[gnarly_1]

HI....I spent 16 1/2 yrs on pain meds so I can relate your absolutely right about what they are doing to you also....and im here to tell you if I can kick anyone can my last detox was off 150ml of methadone.....lets just say it wasn't pritty....once you get to a certain point
and your feed up or should I say sick of being sick...you can give it up....fentynal is  not an ez withdrawal but nether was methadone but it was necessary...the # 1 thing you need is a positive attitude....this is 1/3 physical and 2/3 mental be ready to fight on both fronts
look on the lower right of the screen and look up the thomas recipe pick up the stuff it suggests this will make you a little bit more comfortable get comfortable with the saying
''you just got to be ok without being ok for a wile...you will understand this as you go threw this...lots of hot baths....they really do eaze the symptoms pick up some movies to watch your probably not going to sleep much..read the post and post often for support
fentynal is no fun detoxing but we have had several members make it to the other side
good luck and God bless.....Gnarly