I have been on Fentanyl for pain of cancer treatment side effects & have been reducing from 400mcg & down to 25 mcg without any side effects. 300 x 4, 250 x 5, 225 x 3, 200 x 1, 175 x 3, 150 x 1, 125 x 5, 100 x 2, 75 x 1, 50 x 2 & 25 x 1. After 48 hours of last dose have been having involuntary leg movements first on left for 12 hours, a little relief & upon eating & taking normal meds, vomiting & involuntary leg movements on right side. Are these withdrawal symptoms? Do I need to go in to a doctor? I have no small dose Fentanyl left to take. Only 100 mcg doses.

Sent you e mail, but unless the leg twitches are sopainful you can't stand it, I would just tough it out. It may take awhile, but it is something you will have to get through at some point. At one point in time they used to prescribe quinine for the leg problems - but that is not a drug in favour any longer. Hang in there.

Donna

Scott,


Brotha I've been there! When I weened myself off of Fentanyl I did it old school and went up to my parents cabin on the side of a mountain. I had movies, my mom and 5mg oxycodone tabs and prepared myself for the worst. Every time I felt bad withdrawal symptoms I'd pop a 5mg oxy tab and let it dissolve under my tongue and it would relieve the symptoms. After 3 days of having watching movies and BSing with my mom I came off the hill and was fine.

I had one more surgery a few weeks later, two weeks after that Dec. 17th 2009 I was opiate free. Coming off the oxy took longer then coming off the Fentanyl. I would cut my 5mg oxycoDONE(never split or crush OxycoNTIN or Oxycodone HCI, the time released as it is deadly) into halves and quarters and I would put off taking a "taste" as long as I could but make sure the dosage kept going down. It helped me with the severe withdrawal symptoms.

Hope that helps brotha, it's a b!tch but you can get through it! I had to take an opiate in one form or another for 23 months, with 200mcg of fentanyl being my highest dosage. The painkillers are a necessary evil but with help and strategy they can be kicked.

Keep your chin up soldier!

Eric

Scott,

The leg movements and vomiting are withdrawal symptoms and you should be weening off under supervision. My mom was a CNA and had dealt with an opiate dependency due a back injury which is why I had her with me just in case things took a turn for the worst. So make sure your Dr is on board and don't be alone during this, be safe with it.

Eric

I agree with Eric. Your doctor should be notified and can advise you on titration, although it does sound like it's a done deal. Ropinirole (Requip) a prescription med was helpful for my involuntary leg movement as I withdrew from Fentanyl.

Completely off the Fentanyl for over a month now. Only on 3600 mg gabapentin/day, .5 ml of 20mg oxycodone as needed & Lidocaine topical as needed. I rub a small amount of lidocaine on site of surgery quite frequently & don't use oxy a lot. I have found a little relief using ibuprofen at 400-600 a pop but don't want to end up with stomach problems. Now the doc want me to go on methadone & get off the oxy. They have not figured out why the pain is persisting. Some days are not bad while others are really bad. They say the radiation is still leaving my body. Is that still possible 8 months after radiation? Won't methadone be just as bad as oxy as needed?

Scott, Im happy to hear you are doing so well. Keep up the good work! What a difference a year can make! You could have some nerve damage from some of the surgeries.

Im far from being an expert on the meds. Ive never taken methadone but have heard good things about it. I dont know if it is as addicting ad oxy can be. I used to find relief with taking the liquid gabapentin (neuronton). It was very expensive without insurance so for financial reasons I went off of it but it did work very well. I had used lortab for a while before I was changed to liquid oxy. I cant swallow pills so my options arent as many as what you have. The lidocain topical sounds like it could be something that might help me. I am interested in hearing how you make out with your medication changes.

Please continue to come back and give updates, it can help many others going thru something similar.

Hi, Scott.

Congrats on weaning off the Fentanyl! I'm sorry that you are still in pain. Are you being followed by a pain management specialist? There are other options out there to manage pain that don't involve opiates. I'm guessing that your doctor wants you to take methadone in order to safely taper off oxycodone. As Eric said earlier in this thread, the withdrawal process is hell, but it can also be very dangerous, even when done correctly. You will be at increased risk of seizures and cardiac issues, among other things. I am not an expert either, but I know a little bit about pain management.

I hope you get the help that you need and an appropriate treatment plan. Remember that knowledge is power. Write down all of your questions/concerns and take them to your doctor. Find out your options and the risk-to-benefit ratio of each type of treatment.

Best of luck and please keep us posted.

Kerri

Hello Scotty!


Wow, I just read the words "only" and 3600mg of gabapentin in the same sentence, that doesn't happen often. That's typically the highest dose they'll dish out on that drug as a FYI.

Methadone...now there is a topic. Methadone is a stronger analgesic than oxycodone, and is becoming increasingly popular among physicians for chronic pain treatment. I have experience with just about every opiate pain medication out there ranging from hydrocodone to 200mcg's of fentanyl/hr, but I've never used methadone. I did have a local cancer patient I helped that was prescribed it shortly after going into hospice care and she wasn't a fan. It definitely should be respected though, On November 29, 2006, the U.S. Food and Drug Administration issued a Public Health Advisory about methadone titled "Methadone Use for Pain Control May Result in Death and Life-Threatening Changes in Breathing and Heart Beat.". This was the results of a study done between 1999-2004 where deaths attributed to prescribed Methadone use skyrocketed from around 800 in 1999 to around 3000 in 2004. The issue lies in that unlike oxy and the other popular pain medications is it's more difficult to regulate the levels in the blood.

Now my question would be the same as your Dr's, "why" are you having so much pain this far out of treatment? If it's neuropathy (nerve pain) which is generally what gapapentin is prescribed for, then methadone (or any opiate really) isn't going to help much either as they aren't effective in treating that condition. Neuropathy (pain resulting from nerve damage) is difficult to treat really, antiseizure meds, like gabapentin, or low dose tricyclic antidepressants show the best results however those are weak at best, which is why the lidocaine is often used topically and offers a short reprieve in turning off the nerve.

Neuropathy in the Head and Neck region is generally very difficult to treat as a number of the nerves in your face terminate in the same area (trigeminal nucleus) in the brain, which results in "cross talk" if you will. When one of the nerves activates pain it can activate the other nerves, it's the reason when you have a bad toothache your entire face feels like it's going to fall off. It's also the reason "Trigeminal Neuropathy" or TN, (the trigeminal nerve is your C-5 or Cranial Nerve 5) is considered to be one of the most painful conditions known, and also very difficult to treat.

My 7th Cranial Nerve (C-7, responsible for facial motor function) was damaged during my mandiblectomy and I suffer from chronic nerve pain due to this issue. It did lessen considerably when I had my C-12/C-7 facial nerve graft done a few years ago in an effort to restore function to my face. The operation failed to restore function however did have a positive side effect in lessening the pain. This is also the reason I know so much about this crap

If I were you I'd see what the Mayo Clinic has to say as you are in MN. Most of the answers I found during my search was from their website and I continue to use the site today when I need to look something up. I'd also say that I would look into depression as your body "amplifies" pain when in a depressed state (which opiates can contribute to as how they work on your system), here is a link to a Neuropathy.org's newsletter http://www.neuropathy.org/site/DocServer/Issue_31_Sept08_.pdf?docID=1661 that maybe helpful. Skip to pages 8-9, which detail what I mentioned above.

Personally I use "alternative" methods in dealing with my chronic pain so I'm not pumped full of prescriptions. Nutrition and exercise, breathing techniques, meditation (part of biofeedback routine), natural anti inflammatory foods like tumeric, ginger (watch dosage) among others. As a last resort I'll use cannabis (vaporized, never smoked) if I can't "get my head wrapped around it", which shuts my facial nerve down every time and eases the pain in the donor leg where my fibula and tissue was taken to repair my jaw and face. I try not to use it much however as with any drug it has it's own set of side effects (mild paranoia, memory loss etc...) the biggest however is always the effects it has on my waist line.

Sorry for the book, from someone who's been there and understands, I'm sorry you are having these issues. I was on pain meds for a total of 23 months and haven't touched them in over 2 years, I hope you find answers my friend.

Keep your chin up, we are here to support in anyway we can!


Eric