FENTANYL PATCH WITHDRAWAL CANNOT COPE

Treatment and medication
1

Hi, Can anyone help and advise me please, I am desperate, I am not coping with a fentanyl patch withdrawal from 50 mcg to 37 mcg 11 days ago. I have been on the fentanyl patch for just over 5 years but my reason for a reduction was because my severe pain and muscle spasms were getting so much worse on the day of changing the patch and all that night. I'm now suffering from this small withdrawal. I'm having more pain, muscle spasms and cramps, they have multiplied, I have a continuous headache, my body and my joints are so painful. My flesh is hurting me, like I'm bruised. I feel sick, I've been sick. I've no appetite, I'm exhausted. I'm emotional, depressed and have negative thoughts. I had a failed major spinal operation a few years ago, I've been in constant pain for several years, that's why I'm on fentanyl. Can anyone help me please to understand the withdrawal and how long will I feel like this for, and how long will it take to completely come off of the 50 mcg patch. Are there clinics that can help me with the withdrawal. I just don't know which way to turn.

Im 62 years of age. I also have fibromyalgia, and I am in constant pain, and suffer from dreadful muscle spasms and cramps, which I take other medication for. Thanks to all.

2

I can't respond tonight but maybe tomorrow.  This will be one of the hardest things you ever do, but I promise you, you can do it, and you'll be a new person when this is all over,  Hang in there.  I'll try to respond tomorrow.

Virtual hugs!

Melissa

 

3

Hi Melissa, thank you for your lovely words of hope and reassurance, i am grateful for your support. Thanking you Vicky

4

Hi, I am in the process of withdrawing from 50mcg to 37mcg could anyone please tell me how long these dreadful symptoms of withdrawal are going to last, along with awful pain and muscle spasms. I do suffer ordinarily with muscle spasms and severe pain due to a failed major spinal surgery, but I'm so much worse now. When do you consider the next reduction, it's frightening because it's obvious my body is not coping with this initial reduction but I want to get this dreadful fentanyl out of my body. Thanks to anyone who can advise me.

5

Hey Vicky~

I hope you are hanging in there.  I was on the Fent Patch 100mcg for over 12 years and out of the blue, my dr decided he wasn't going to prescribe narcotics anymore to anyone.  I started my freedom journey last July 17th.  So, a year next month.  Been totally off since Nov.  It was the most difficult physical challenge I've ever been through.  Sweats, nausea, vomiting, diarrhea, pain, restless legs, anxiety, feeling like things were crawling on me, stinging me, etc.  I don't want to scare you but I want you to know that once you're done with this, you'll feel more awake, more alive, more engaged than you have in a long time.  If it wasn't for this support group I couldn't have done it.  Most people are under the heading Fentanyl Withdrawal is Inhumane or something like that, so you might find more support there.  But I promise, you can do this!   What most of us did was tape small bits of the patch instead of drastic reductions, because it's already harsh enough.  The symptoms will last several days - the nausea, vomiting, etc., the more acute withdrawal symptoms.  I'm STILL having trouble with restless legs and it's horrible.  Like i said, I started detoxing a year ago. But even with everything I've been through, it was definitely worth it.  I feel alive again and I love it.  Keep hanging in there!

Melissa

6

Hi Melissa, thank you for your reply, advice, and kind words of support. It's great news that your off the evil patch, sorry though that you are still having trouble with restless legs. May be with time this will go. To be honest I'm really frightened and scared as I feel so ill in myself, not coping with all this extra pain and extra spasms. Doctors don't understand about the withdrawal. I'm just scared that the added pain and spasms aren't going to reduce. Melissa is it not dangerous to fold the patch, I'm on matrifen, a bit different to fentanyl but the same family!! How much would you fold it by? Would you wait a few weeks until the pain and spasms ease slightly before doing this. I have many other health problems, I am not a well lady. Thank you for replying to me. All the best Vicky

7

If you are getting off the patch, what are you using to help the pain from the botched spinal surgery?  You must still have pain from that?  I am just asking because I have a bulging disk they said that will always be there.  So, I am trying to get off the patch but am currently in Physical Therapy (traction) trying to improve the bulge in the disk enough to be out of pain so I can get off of the patch. 

8

Hi, I'm currently on oramorph, diazepam, pregablin, duloxtine and a few others medications, plus 37 mcg fentanyl every 72 hours. I'm still struggling badly with severe pain in my spine, and all my body, spasms and all the other withdrawal symptoms. Not sure if this severe pain is because of the failed spinal surgery which the patch was suppressing slightly or partly due to the withdrawal. It's now nearly 3 weeks since I started to reduce and I'm struggling big time. Yesterday I was in bed all day. Sorry about your bulging disc. I am hoping and praying when I'm fentanyl free, I will have a better standard of life.

9

I will keep you in my prayers!!  It is hard to know if the pain is from the withdrawal or the injury so I hope it is from the withdrawal and once you have it out of your system that you will be pain free!!

10

I was on Fentanyl patch for over 15 years, prescribed by my pain mgmt dr for my Juvenile Rheumatoid Arthritis and many joint replacement surgeries.

I decided to go off of Fentanyl 16 months, managed by a pain dr and it was brutal!!!! It takes 2 years.

I remember when someone told me that when I was one month into detox, I wanted to cry!

The first 6 months brutal, up to a year very hard.

I'm still experiencing some symptoms with anxiety and heart racing, but so much better the last 2 months, my energy is returning. It's was a very long year. I wish I could say it was easy, but NO, definitely worth it though

I take dilaudid for pain and it holds me well enough.

Yes....Huge Fatigue, and so much more. Let me know if you have any questions? Others helped me so much, it made such a difference to know what I was facing was expected. It's scary not knowing and drs don't know. It's frustrating.

Hang in there. I know it's the toughest thing you'll ever go through, but worth it!!

I'm still looking forward to the 2 year point, that's how long it takes for your receptors to return to your normal. I'm still experiencing some heart racing and internal anxiety.

((((Hugs)))). It's so hard, but you can do this!!!

11

Agree 100%. It's was so difficult and I had all the same symptoms. I have been off fentanyl now for 16 months. I was on 75mcg to 200mcg for JRA and joint replacement surgeries for over 15 years.

It does take 2 years for your receptors to return to your normal.

Even though I'm having some symptoms still, I feel so much better then when I was on Fentanyl. Such a freedom!!!

I'm feeling so much clearer in the head and not so angry, I'm a calmer person as well.

Stay strong, I have been where you are and it's so worth it!! You can do this!!

Karen

12

Hi Karen, congrats for being fentanyl free, that is amazing well done. Oh wow thank you for your response, and taking the time out to help and encourage me, you have touched me and lifted my spirits just knowing you are out there and have been through what I'm now going through, and I'm able to ask you questions, thank you. In my life I've been very close to death on a few occasions, having meningitis twice but this comes very close to that horrendous hell. But this just keeps going on and on, and I can't see any light at the end of the tunnel. Ive only reduced by 13 mcg and have another 37 mcg to go. But there is no way I can even begin thinking about that reduction now. In fact I think when the time comes, I will tape a thin section at a time. If it takes me a year then let it be. I've been up most of the night with spasms and my body jumping, which was ongoing from before because of the failed surgery and fibromyalgia but so much worse now. Bruising and severe pain, tummy cramps, headache, feeling sick it's goes on and on, every bone hurts me. I'm now taking extra morphine. Karen how long did it take for these withdrawals to ease off and how did you manage to withdraw from this poison. Thanking you so much. Vicky

13

Thank you for your lovely kind words. I pray the majority of the pain is due to withdrawals, but I have big doubts. Good luck and all the best when you start your withdrawal. Hope all goes well for you. Let's all pray for each other. X

14

I'm really sorry you're feeling so awful. Fentanyl is such a hard thing to be on and to get off of. My pain dr tapered me off of Fentanyl too fast. I was on for 15 years and he had me off in 30 days ...

Looking back I would go so much slower with taper . I was on dilaudid with the Fentanyl and have stayed on the Dilaudid for pain.

My dr had me on 3 different medications to help the withdrawal symptoms , they helped a little. Once I knew it would take 2 years to get through this, the first year being the worst, it gave me a timeline, which helped my mind at least. I knew it would be a very slow process and I had no options but to move forward.

I was at 75-50-25, then 12.5 and went off it completely from there. I talked to my dr and he informed me afterwards that there is a medical detox where you're asleep for 24 hrs and they detox your body while you're out. Still have withdrawals but the intense first month is suppose to be easier?

For me Vicky the first 3 months were the hardest, then at six month I felt much better, it seemed every 3 months I got a little better. I did notice I was very, very sensitive to touch and sounds at 3 months

I did have a severe racing heart and anxiety at 6 months, I was diagnosed with Silent Reflux. I was told fentanyl can cause reflux, or it could have been a separate issue.

At 3 months you should notice less symptoms, that was my first mark of improvement. The fatigue was really bad, one year mark I did notice more energy.

Im 16 months fentanyl free now and I'm still having a few things with my nervous system. I feel better then when I was on the drug that's for sure!!!!

I do not work and cannot imagine having to work while all this is happening.

All the symptoms you explain I had too. It's so hard. I feel for you, you will start to feel better slowly. Keep your eye on each month you'll feel better and better once your off the fentanyl completely. You might look up medical detox, I would it I would have known about the option. Any questions, please ask?

Keep me updated. I'll be thinking of you!!

Karen

15

Hi Karen, you have taken time to explain to me, I want to thank you for that, I really do appreciate it, and it your support is helping me to continue. I've been in bed most of the day, my friend is looking after me, and helping me do this reply to you. I'm in despair but getting a little comfort from knowing that this is all part of the withdrawal symptoms. Karen, do you live in the UK. Thank you for explaining to me. Could I just ask you please, when do you think these severe withdrawals will start to subside, bearing in mind I will not be reducing again for some weeks. It will be 3 weeks this Friday that I started a 13 mcg reduction. Karen when do you suggest I start reducing very slowly again, beating in mind I do not have good health. Thanking you. Vicky xx

16

Cleo are you taking medications to help your withdrawal symptoms? It helped me get through the days, even though I still had the withdrawal symptoms, the body pulling, headaches, legs moving, hot flashes, chills, constantly moving my body, bones hurting, just miserable I was on a combo of 3-4 different drugs, and they helped, but made me very sleepy, most of my fatigue at 6 months of withdrawal were the drugs, but easily stopped them when I was ready.

I live in the US, Scottsdale, AZ. We did live in Washington state but moved to help my JRA pain.

You just have to take it one day at a time and if you can't get out of bed that's okay. For a year I went from bed, to shower, to a chair then back to bed. I mentally allowed myself the time I needed. You will get through this, I hope a pain/withdrawal dr is helping you, If not please find one. You can do a medical detox, I wasn't informed it was an option until I was through the worst of it, but so wish I could have.

I went from 75mcg every 48 hrs for 15 years, sometimes I was up to 200mcg every 48hrs if I was recovering from a surgery. When I was going off the fentanyl I was at

75mcg to 50mcg stayed on 50mcg for 3 months then my pain mgmt dr took me too 25mcg for 2 weeks, the 12.5 for 2 weeks then off completely. I also took Dilaudud for pain and stayed on that and, taking 4-8 mgs every 4-6 hrs and that helped pain JRA pain and lessened withdrawal symptoms a little.

I had 3 months of awful withdrawal once your totally off of the Fentanyl. A lot of your pain you could be having, at least for me was the detox process.

I would never go back on fentanyl unless I was terminal.

It's a very tough process, be patient, I know that's hard to even imagine, but there is no choice if you want off this terrible drug.

Once off I talked to others and it helped me mentally mark small improvements and know i would get to the end it was h

Just going to take months. I tried not to looo to far in the future, just month to month and soon i was at 3 months, then 6, a year now I'm at 17 months.

You can do this, lean on friends and if you can see a specialist. If medical detox is a option go for it.

I'm here if you need help. Thinking and praying for you!!! Hang in there you got this!!! Karen

17

Hi,how are you coping now Cleo? I'm just starting out on weaning myself off the l patch. I had a bad case of acute sciatica but was given heaps of drugs including the patch. However, was very sick and couldn't keep water down and then had a phone consultation with my gp who told me to come off them. Never felt so ill orange no.2s, goosebumps then sweating like a pig. Very weak not much appetite, family getting worried and stressed. Any advice gratefully received x

18

Cleo2017 how are you feeling? I too was ween down from 50mcg to 37 then after 6mo of 37 down to 25mcg. Ive noticed my hydrocodone has increased with reduction from 50 to 25. Evidently it was a Kaiser across the board reducing all Fentanyl patients dosage or at least thats what my Kaiser Dr swears by. Winter time, season changes and rain throw me into Fibro flare and pain sky rockets. Hope you are doing better...Prayers & Healing