First time posting here -- and really quite relieved to have a place to speak openly - at least I hope. There aren't a lot of places one can speak about their narcotics use and not be judged. To top it off, not a lot of folks can hang in there with you if you speak about cancer, cancer treatments, the resulting damage and coping with that -- along with living with a chronic form of cancer that at this time isn't curable. Okay, so now that I've laid it all on the table - here's what brings me here to you kind souls traveling in similar boats as mine down a similar river - uh, minus the cancer shit hopefully - but then, y'all probably have other shit that's just as challenging - cuz everybody's got something, right?
9 yrs ago was my initial cancer treatment for lymphoma that left me with some severe neuropathy that gradually grew worse until by a few years later I was a mess. I found a doc who specialized in post-treatment cancer patients with pain issues. Ding-ding-ding-ding! We were a match - or so i thought. Let's just say she turned out to be the MOST demoralizing, cruel, egocentric, shaming doctor I've ever met. But she gave me initial relief. Relief through methadone and neurontin. I wasn't thrilled, but I was desperate - trusted her and found relief. Short term - she and the meds gave me my life back -- with function.
Five yrs later, I'm attempting to wean off methadone. I've been steadily on 15 mg/daily for the pain and weakness from neuropathy. I attempted once before - with disastrous results. I had been steadily asking the doc, "Could I begin to taper off?" Each time I asked infuriated her, I guess because it questioned her. Frustrated with me she said, "Okay, why don't you try that? Go and cut it by half." I did. The only thing I learned was that I didn't have a life worth living without methadone cushioning it for me. It took me many more months, reading on the internet from others, and really learning about methadone and how to titrate it to learn how cruel her little experiment with me was - just to prove herself 'right.' Now I'm with a different doc - and have wanted to try again. After reading on line forums such as this and advice to titrate incredibly slowly if you want success, I've started trying again since last Sept. - so I guess it's been 6 months and I've gone from 15 mg down to 6 mg. The lower I've gone, the more symptoms seem to arise, but tolerable, and dependable like clockwork. It just concerns me as it's shifted into a longer stretch of some of the discomforts between stepdowns. So far, the neuropathy isn't flaring any worse and I'm introducing some other new non-drug treatments for that so hopefully I'll have other scaffolding in place as I slowly remove the methadone scaffold.
Reading some of the reality here for others -- the challenges, the fact that methadone is the hardest of all to kick in many folks' opinion -- it all kind of freaks me out. Once upon a time I had to accept the fact I'd probably be a life-long narcotics user out of 'quality of life' necessity. That took some work in my brain having never been there before. Now I'm going the other way, having never been here before, balancing tapering with withdrawal symptoms with life after cancer treatment - which easily I may have to face again [I've had two relapses and 3 rounds of treatment total, getting checked regularly for any further relapse which then would entail future treatment and the potential of further leg damage. But I'm encouraged at the moment with a steady improvement rather than any sliding backwards - but it's a slippery slope.
All to say, I'm looking for any assistance with keeping my footing on this slippery slope. Any suggestions? Thank you.
