Withdrawing from fentanyl but still using several other pain meds

[SargeG]

I am voluntarily weaning myself off of fentanyl. I've been on 100mg patch for around 5 years. I've had two spinal fusions resulting in a 9 level fusion with augmentation - titanium bars from mid back to my tailbone anchored to my pelvis. I also take methadone, vicodin, neurontin, and Ativan.  I've felt over-medicated for a while and decided to start with the eliminating the patch because it tends to fall off when I exercise.
I went from 100 to 75 without any problem. After a month at 75, I cut down to 50. I've been miserably I'll ever since with headaches, nausea, severe incapacitating dizziness, insomnia, chills, depression, and now pain throughout my body. I've been at 50 for 6 days. I'm about to give up and go back up to 75 because I feel so horrible and can't function.
Any suggestions?  The "cocktail" I've been on does keep the pain at bay, but leaves me feeling exhausted all the time.

[vereena132]

Congrats on your decision to to stick with it and I know its a tough one. You know its time to be free from addiction and start feeling good about yourself.I decided to get off the breakkthrough meds first because they would be easier than the Fentanyl. I think your fighting the worst demon now and will still get so much clarity even with the vicodin. But you cant stop there!! I actually took 2 steps backward yesterday I think caused by lack of sleep and drinking too many beers but slept 6 hrs. straight last night and am feeling back to myself today. The last to go for me is the anxiety,sweating and and ability to sleep. Today will be my last day of xanax and feel some anxiety about it but have cut myself to 1/2 mg for the past 10 days which I think wont be so hard to quit. I just cant belive how my whole thinking process and feelings have changed. Fentanyl really deceives you as you will find out very soon after quitting. It changes you and you dont even know it while using. I have been praying for your compleat recovery and to give you the strength to quit. I never before put much faith in God until I was desperate and it is so great to feel I can put myself in his hands and have faith. Emotions run wild and I still occasionally cry listening  to music and reading the posts from others here who are suffering. I am pulling so hard for you with tears in my eyes and and think you will keep the strength to stop. Please dont let you changed thoughts keep you from getting clean.YOU CAD DO IT!!!      

[SargeG]

I'm getting excited about lowering my fentanyl again!  I might have stopped at this point without everyone's support I'm going to email my pain doctor now and tell him it's time to go down another 12.5 mcg.  Thanks.

[vereena132]

  I thought my pain was out of control but found out it was caused mostly by the use of Fentanyl!!! Please research "opioid hyperalgesia" and you might find like me the pain can be caused by pain meds. I still have pain but nothing I cant control with OTC meds.. After being off since Jan.21st I am getting my desire to do the things I always loved to do,no more ED problems,no worry about refills,clarity,and realize my responsibilities to protect and care for my wife and grown children. Today I told my wife that if I felt any more euphoria I can accomplish anything.Things have turned around in my mind and am feeling at peace with myself. Just having control and having true feelings and clarity gives me the strength to NEVER let drugs take control of me ever again. I always acted on impulses that were crazy like buying a new deluxe truck on my way from work.I was fortunate that I was able to return for a full refund after several days later. My marirage is now great , and realize that protecting and caring for my wife and grown children are what is what matters the most to me. I still have intense feelings of withdrawal,sweating,anxiety, but know they will pass within a hour or so. Thing do get better quicker than you expect and will change your whole life and feelings. I also was under much pressure owning a restaurant and all the responsibility of 30+ employees which made me feel I am out of control with the pressure. I now am retired and have just started to enjoy life again. Clarity started after about 3 weeks and every day I felt better I took 2 steps backwards but now everyday is a huge improvement. Just dont give up hope and know things will get sooo much better and you CAN have peace in your mind from worry about being drugged. Wishing the best for you.          

[SargeG]

I am soooo looking forward to clarity. I was a VP of a large media company with 60 producers sending me reports and messages all day. Now I can't fill out a simple form. My brain is mush.

[SargeG]

I have heard of this from my doctor and I sure hope that's the case. The pain has increased as I cut back the drugs but I need to get off everything before I'll know where I really stand. Right now the medical option is to have wires inserted in my spine with a controller placed in my hip under the skin. Yech. Not going there until I can't walk without it!

[vereena132]

One other thing I forgot to mention is to read about "opioid hyperalgesia" in which opiates can cause more pain than with the use of  Fentanyl !!

[luv2bmomjen]

You can do it slowly with little to no w/d symptoms.  I have dropped 60mg of OxyContin in just three months time and with little to no real w/d's.  The thing that gets me to keep going is the clarity.  I look forward every week to my next drop because I know I will be more clear and focused.  Best part is it only takes about three days at small drops for my body to get use to the new amount and I honestly have LESS pain now than ever.  It is crazy.  I also weaned off of fentanyl about a year and a half ago.  I dropped from 82mg (two different dose patches switched daily) to 40 mg of OxyContin.  The Oxy was about half the narcotic as the fentanyl I was taking but it was an easy switch.  Now that I am off the OxyContin all I have left is short acting meds and those will be much easier.  You will get there but please be careful and take your time.  Remember it took you years to get where you are on the meds and it can take as long as you need to get off them.  There is no reason to do it so fast and be so hard on your body.  I'll be praying for you.  

[vereena132]

   I didnt think I would be able to do cold turkey either but was soo miserable since getteng below 100mcg.and after the 25 mcg cut each month getting below 75mcg I just couldnt stand anymore. Yesterday I felt almost euphoric without any for weeks and know I will NEVER use it ever again. I am retired and on disability also or I wouldnt have not been been able to work for the last couple months.Now I feel better daily but still have the occasional intense feelings of withdrawal but they are  happening less often and last maby only less than a hour. My last dose was Jan. 21st. Sleep is getting so much better but the sweating and anxiety are still very bothersome. I actually feel better than I have felt for years with my pain level. The biggest change has been in my thinking and attitude. Cold turkey is severe hell but makes recovery much faster. If the tapering works for you I would do it at 12.5 at a time not 25 as that was more than I could handle.Good luck and know feeling better happens faster than expected. Good luck!!!

[SargeG]

I don't think I can do cold turkey but I think I'll get there eventually. I can relate to every one of your symptoms. All I want to do is lie in bed and sleep. I'm recently retired because of disability so I can sleep all day if I want to. That makes it harder.
Thanks for all the helpful comments.

[SargeG]

Hi. I do have a pain management doctor now and he's helpful when he's available!  I'm in an HMO that is generally excellent but they only have one "harm reduction" doc who helps with withdrawals. I was in a 5-day a week pain mgmt program when I got off morphine and methadone. It was very helpful but there are lots of folks waiting for an open slot and I've already been once.
My next step is to 37.5 mcg. I'll probably start that next month.  
I take 10 mg Vicodin five times a day for breakthrough pain.  That will be the last one to go.
I do exercise regularly at least. I have 3 dogs and we climb the mountain trails for 3 miles every other day.  They are my little lifesavers.
Good luck with your 25mcg jump. I'll get there some day I hope.

[SargeG]

My next step down will very from 50 to 37.5. I was so sick last time that I've put it off for the last couple months. I definitely will do it in 12.5 increments from now on.  
Thanks for caring.

[cin333]

Hi SargeG..I just finished reading your post from under the pain management forum.  I also am in the process of titrating off of the monster medication Fentanyl.  I was to scared to try this myself so I went to a pain management doc. I have been on Fentanyl for approx. 4 years, and I just told myself..I just have to get off of this. My family doc wanted me to try and titrate down..and he suggested to go from 100mcg to 75, then 50 and the 25 and 12 mcg.  That just is too much medicine withdrawl from your body,..so I went to a pain management doc. I was on 100mcg then I went to 87 mcg then 75mcg then 62mcg then 50 then 37mcg. I did experience some withdrawls like anxiety, profuse sweating and legs feeling very heavy. It is not a pretty site. You need to go down or titrate down very slowly. Some people are different from others as they experience different withdrawl. I would like to encourage you to drink enough fluids and try to do some exercises at your own level..but just don't sit around..try and go for walks. Tonight I will be starting my 25mcg patch..Yes I do get apprehensive every time I change dosages. Please don't give up! Your life will be better. Are you taking anything for b/t pain? I am taking Dilaudid 4 mg four times a day. I wish you much success on your taper. Please keep in contact..all these people are very knowledgeable on this site. Hug/Smiles and God Bless  Cindi

[horselip]

Maybe you could do a 12.5 drop next on the Patch? Slow can be little less shocking to the system. a thought.
Horselip

[vereena132]

   Please Please dont lose your will and desire. You badly want the change and know it is the only way you will get your life back and see the world in a different light!!  Withdrawal is hell for sure but only a small portion of your life for the change of a lifetime of happiness and peace in your mind. We all hit low points and think its not possible for me but YOU CAN DO IT!!!! Withdrawal is a long misery and thats why I finally went cold turkey. After a time during withdrawal and notice the slightest improvement it will give you more strength than you can imagine! You have been suffering way too long and need to get it over with as soon as possible. I am still very uncomfortable but still feel much better than the worry of  constant refills,worry of running out early, cash and mental anguish etc..Make the change you so badly want and and get your life back.I was scared as hell as are you but  know its possible now and have only a desire to feel good about my life and have the freedom from the constant misery and worry. I hope and pray for your recovery. DO IT!!!!      

[SargeG]

Since my last post in August I've weaned myself off methadone and morphine. I'm still at 50 on Fentanyl and maintaining. I'm afraid of the next drop though. I'm still at the same level of Vicodin. It will be the last to go.
I'm losing all my motivation to get off the drugs. I sleep most of the time, or at least lay in bed. My legs hurt all the time. I still think reducing the opiates might give me my life back but I'm no longer sure. My meds are so delicately balanced that even being a couple hours late will put me in withdrawal. Now I'm just rambling! Thanks for all the support everyone.

[vereena132]

Hi, I have been on Fentanyl for aprox 8 yrs. and decided to give it up after several yrs.@ 150 mcg. because I have been mild withdrawals even at the prescribed dose. I started a taper of 25 mcg a mo. and was sooo miserable at 50mcg I decided to cold turkey it. Its been aprox 2 mos.since and still cant sleep more than 3hrs at a time,runny nose, anxiety. It has been hell but much better than the first 2 weeks which were hard to even walk. This drug changes your life and thinking and you dont even know it. I quit enjoying things I always enjoyed,became a lazy slob and only looked forward to sleeping. It has been 2 mos. and still feel like crap but have some clarity which gives me more strength. This drug actually seemed to cause more pain than I really had but couldnt tell it until I was off about 6 weeks. After being off my pain is acceptable and feel some real clarity finally. Yes I thought I was going to die with pounding heart,high heart rate,etc. Still sneeze, runny nose,and sleep problems but things DO get much better after the severe withdrawal for about 3 wks. Just let the feeling happen and have faith that your life and attitude will change. Stay strong and if I can do it anyone with a true desire can. I will be praying for you and prayer has helped me so much. Good luck!!!

[sprich3]

I also voluntarily tapered off of my pain meds, and at times, it was horrid.  Some tapers are easier than others, and you just have to take it slow like the above post says.  I had tapers that took 2 weeks for the symptoms of withdrawal to abate, and it's very hard, particularly pain and anxiety-wise

If you go to the group here called the Chronic Pain Couch, you can find members who have also tapered off of Fentanyl, and I think they can better help you.

[philnoir]

Sarge,
Sounds like opiate withdrawal to me. Other symptoms are a runny nose, nausea, restless legs, and watery stools.

You are weaning too fast. Please get some medical advice, and to reverse the withdrawal symptoms, go back to the 75ug patch.

Opiate induced fatigue and somnolence can be treated with non-amphetamine medications provigil and nuvigil, or with an amphetamine. Personally, I've been using Ritalin for about 14 years now to combat the effects of my pain medications. Before Ritalin, I slept 16 hours a day and still felt tired all the time.

[itmc]

I have been on some kind of pain medication since I was 21 years old now I am 55 if I had to do it all over again I would have said no at the start of the rat race.I am on 100 mg fentanyl patch now it's a good medication if you have cancer or something you can die from. The doctor can pull these pills or patch out from you anytime he wants and if your on medicare or medicade because of the way Obama care is.Its a bunch of **** and you will be going through withdraw alone and if you are not in very good shape you can die. please ,don't get yourself started on this junk. Just because the doctor says it will take the pain away, he will not be there for you when he pulls the pills out from under you.
It sounds great catching a buzz with you doctors  permission. But  in the long run you will be happy to jump of a bridge , before going through withdraw.........In Christ's Love Eddie Jury.....Please ,if your a Christian please PRAY for me as I try to wien myself of all the junk the doctors have me on from zanax to oxycodone to the monster 100 mg fentanyl. I know it will take over a year,but I will be free from a demen that I myself have no control over , but I know Jesus is much stronger.....