Health Organization for Pudendal Education

Hi everyone.
I am tirtrating very slowly down off Methadone. The pain doc wouldn't me on another oral med as them seem to really swear by methadone a s good drug for neuropathic pain. At each visit I expressed my desire to be off this drug which hasn't helped much and is not worth the severe battle with constipation and laxative use , constipatioin, then diarrhrea etc. ...a nightmare. (almost as bad the pain and no good for the PN and the bladder issue... as I try to express. but it falls on deaf ears...
I have gone halfway down and am at 20mg now. My pain doc wants to me stay at that level until the next step in my pain relief journey.. Possible pump trial which is over a month away (I hope!) i am new with this doc; he has no clue of the 6 year pain battle etc.
My constipation battle was so severe this week esp yesterday (I spend every day agonizing about how much laxatives to take as I keep having to up the amount of stimlulants to poop, even tho I ve added dietary things ,lifestyle changes etc.. as recommended by my extensive research on managing opiod induced constipation .. but still am miserable.
So I decided last night to go down a small increment (2.5 mg) to a total of 17.5 daily. due to the above.
I figured if the pain worsens I will go back up this small amount again..
The pain pump doc has been unresponsive to my request for advice on a laxative plan to manage my bowels while I am on this med,
so hubby and I made this decision..
I have done it all long --originally at 40mg and slowly dropping to 20..Docs have generally mentioned guidelines on going down slowly etc.
I have kept my pelvic pain gyn aware regularly but she no longer manages pains meds. I know she really wants me off this med as she feels its making my pain worse I think she would approve and I have emailed her.
Is this small change safe at this point? I can always go back up 2.5 mg if neccasary but want to be safe. I truly hate this drug and can't wait to be off it.
I am very upset and scared, so I respectfully ask not to post the negative stuff about opiods, especially methadone as I know, and thats why I want off! (i tend to worry myself sick as its my nature and currently I am pretty overwhelmed.
Thx kindly for any advice about the above ...its always appreciated.!

Kathy

Katy, From what my pain doc saig it seems titration is not an exact science so he gave me guidance and then said it would depend on what happened and how I felt for getting off fentenayl patch using 5mg oxycodones 4 per day equaled the patch and suggested going down over two week period and if I had withdrawal problems before my next dose then take it at that point and not wait. Like you I want off and it is okay for the nerve pain but I am having nerve pains in my toes! Both the little toes and one next to it on left foot are feeling like someone is stabbing needles in and it is mostly when I walk especially wirh shoes on, big toe also some of my reguler chronic toe pain. I am trying to tough it out and see if acupuncture (more needles) can help to reolve ths. Just went two 2 pills per day and will stay at that. Generally I iuld try to go with what the doc says but you may be okay with your change but keep track and watch for any side affects, of course I am not the doctor! Good luck
Janet

Thx Janet for your reply
sorry you're having nerve pain. hope things get better and that you can get off the med as soon as possible.
I seem to note increased anal pain at certain times but unsure yet cuz at wither level 20mg or the 17.5 the pain is bad so hard to tell. Can;t even

Im going down more mainly due to bowel issues which seem the same or worse thus far/
Maybe it could be that a subtle increase in nerve pain is angering the nerve and the nerves are making me feel backed up sensation...Can;t even tell you if its nerve pain, none of the typical nerve issues ---only throbbing and now pressure in bowel and of course bladdr
Hate this guesswork
Oh for a doc who would be committed to helping a patinet manage both the meds and the side effects...They shouldnt be pain mgmnt docs if they don;t want to bother with a patinet in pain!
Thx again
Kathy

Kathy,
Thanks for the sympathies. I finally thought about searching for "exercises for toe pain" and found a list that I did last night and this morning and may be helping a bit. We went grocery shopping and I thought I would just grin and bear it but it was so cold my feet ended up in partial numb and other pain. We will see how it goes today. I hope you can find a real pain guy that covers everything. We seem to have such a hard time with just getting PN help you would think the other docs could at least help with their pieces. My story is clearly not as bad as yours just some bumps in the road as I am getting much better but you need real help and wish I had a name or place to reccomend. You are in my thoughts and I wish you better days ahead.
Janet

Thanks Janet
If ifs not one thing its another, right.
But I do hope you feel better soon.
My husband and I are keeping the faith that something will help soon.
We've both worked so hard to find answers, root cause etc.. but now just a good level of pain relief is my first goal.

thanks for your support1
Kathy

Kathy,
I am slowly getting better then on the feet too long and reaggravating it. Maybe by next week it will actually clear up. I saw your other post on another drug/combo that might be less constipating and still help with pain, that would be great! Hope you can try it and get some relief. Many a challenge but I know I am getting somewhere and almost at my 2 year post surgery, time I am sure has healed me. Hang in there your turn should be coming around.
Janet