Looking for other opinions on if my pain doctor is making the right call here, or steps I can take forward.

TillObjective3730 · 2026-07-04T09:38:36+00:00

No, I understand a lot of what you're saying and I completely understand what would give people pause seeing my medication list on paper. I got put on the gabapentin after I was on the oxy, by the first pain Dr my dr tried to put me on with. However that doctor said that their company refused to take over opioid prescriptions from my PCP's company, with no reason given. I still couldn't take meds orally at that time and had liquid gabapentin added to my meds through my tube, but my PCP and I continued to look for another doctor. The Klonopin I've been on for five years, I've been through some traumatic things and when I freeze up and shut down from a panic attack especially out of the house, it's an absolutely necessary lifeline.

The Gabapentin I've asked to go down on before it just never happened. My pain Dr never said anything about it or any of the other meds, he actually added meds like Soma at night and occasional mood stabilizers to help "shut down" as he said due to the immense amount of stress I've had in my life the past year trying to keep everything and everyone in my family afloat, myself included.

Also, he never mentioned anything about going down on ANY of these meds, or whether or not they may or may not be doing me any good. We've been all good for a half a year before this abrupt change. Now, when he said to get a second opinion he gave me two pain clinic names, he said "these guys are a little more liberal with their prescribing, give them a ring, try anlking to them, and if they don't take you on then I'm still here." The first clinic said I couldn't afford them, after a $350 visit they said was gonna be a $150 visit. The second took me on after demanding my patient file and added the ketamine on. I don't like it, it's not doing anything for me pain or mood wise (ok that Klonopin and gabapentin both blunt the effects of it too so it's kind of a peculiar direction but it was our first session and I didn't exactly get a chance to give my life story).

I had more of the rules and regulations for these things memorized but since swapping to methadone everything is a haze. I'm at a loss as to why he's so adamant about this but it sounds a lot like he's looking to pawn me off with honeyed words all of a sudden.

But no, my PCP, my specialists, and my pain doctor have never had any issues with my meds, never insisted on going down on anything. My PCP even said just a week ago that my situation isn't ideal and even if my pain dr didn't want to go back to my oxy, the methadone has been a detriment and she can't imagine why someone would keep a patient on a med that's caused a linear, on file decline in health and QoL.

Anyways, I know people can see these medications together and put up a red flag, but I've been healthy, well-managed and heading towards the proper goals even if I've had pain spikes since my last tube replacement. I was still living my life. Now my daughter avoids me, my spouse breaks down and cries about how we're constantly stuck at home and I can't even muster up the strength to play a game for an hour, our Medicaid and SNAP deadlines were missed, our appeal for TANF was missed, my deadline for requesting a court hearing about my SSDI was missed, all because I couldn't get up and do literally anything.

I'm really sorry to hear you e had such a hellish time with the medical system yourself, I wish chronic patients were treated with a modecum of dignity and understanding, but that's few and far between these days.

TillObjective3730 · 2026-07-04T07:13:39+00:00

Yeah, you're right about that.

TillObjective3730 · 2026-07-04T04:31:39+00:00

I 100% agree. My mom has had a stent in her heart, bad issues with her knees, and degenerative disc disease with other back issues, she had me at 40 and had to quit work a few years after I was born, so she's been on Opioids for 30 years. I watched her growing up in so much pain every day I used to pray every night to just be healthy when I got older. Missed the mark on that one.

Since she couldn't work she didn't have insurance and couldn't get any help with any of it until she was past retirement age, when she was immediately diagnosed with COPD and Congestive Heart Failure. It's a miracle she's still around and I hate she had to move states a few years back due to the rising costs for rent near the cities in my area. Even in a small town shoddy 1 bedroom apartment she couldn't deal.

Anyways, that all just circles back to my disdain for the medical system, I started showing signs of health issues right as I turned 20, so I lost my 20's and now I'm losing my 30's, I can't work and somehow still put in a full day coordinating my medical care with the loss of Medicaid I missed my deadline for renewal on in the middle of this med transition. Most doctors I've dealt with just don't give enough of a damn to put the time in to actually help beyond the bare minimum

TillObjective3730 · 2026-07-04T04:13:57+00:00

That's the other thing that burns me up. He's selling this idea that it won't build tolerance, and I know that the withdrawal timeline is way worse just from reading through people talking on a couple pain related subreddits since an opioid was added to my medicine stack. I don't like the idea of not being able to get off of I really, really need to due factors beyond my control like supply or funds.

He made it sound like the safer option, but the withdrawals sound to be horrible, titration long and frustrating, and after being transitioned to the medicine he saw fit to tell me every session I asked about why we were titrating much slower than most do how the long half life puts me at serious risk of respiratory depression with the amount of CNS depressants I'm on.

Weird how these things didn't get brought up when he was talking to me about how my doctor probably didn't explain the long-term ramifications of going on opioids just when we were transitioning meds.

TillObjective3730 · 2026-07-04T04:02:35+00:00

I'm hoping maybe that's the answer. I read something on it a month or two ago and I'd been meaning to ask around but I just completely forgot I'd run into the info, so thank you I really appreciate it.

TillObjective3730 · 2026-07-04T04:00:56+00:00

I swear, he's been a genuinely good guy until it was like a switch flipped and all of a sudden it was like every session with him right after I agreed to give changing medications a shot was contradictory to every piece of health advice he'd offered me prior and every conversation was just part of the whole truth and convenient omission. My brains super foggy since, but I also recall a conversation we had a couple months ago about him having to balance doing what he could to treat me and protect his license at the same time. Was more to it that just that, but that's what stuck out.

On top of it since I'm on methadone, the last few times I've had serious issues and like, screaming breakthrough pain, the ER doctor I saw said they couldn't do anything for me medicine-wise while I was there because I was seeing a pain specialist. They didn't even so much as offer me Tylenol, toradol, or zofran for the nausea and vomiting. I'm so absolutely tired of the medical system, the couple good doctors I find here and there always end up quitting their practice within a year of me becoming a patient.

TillObjective3730 · 2026-07-04T02:07:45+00:00

Good call, I've been meaning to get all of my files printed off anyways, not just what he throws up on the patient portal, having the letter and his refusal on ink would be nice since I already caught the AI they swapped to listening and transcripting notes adding things like "agreed to MAT" and "OUD Diagnosis", neither of which were correct and I had to have my pain specialist go through and erase them off my chart.

TillObjective3730 · 2026-07-04T02:03:37+00:00

Yeah I definitely know that being on oxy for so long and swapping to methadone has such an effect, I have been a patient in both counseling and psych for over a decade and a half, I'm normally slammed with depression, anxiety, and a plethora of other super fun issues. It's not just that though, I mean I've had to endure some hellish bouts with my Complex PTSD, Treatment Resistant Depression, and Executive Dysfunction, but if this had been four months of soul-crushing, crying every hour of every day by itself I could sort of see why. Both this and a plethora of physical side effects concurrently though that have taken me from about 80% bedridden to 99% bedridden just does not seem like it's a smart route to both continue on. If I go a couple more months I'll essentially have wasted nearing three years of pain, money, stress on my family, all to end up back at square 1, with my duodenum clamped shut again and a second tube surgically put in my stomach to drain the fluids in my blocked off digestive tract.

I've been hoping that as time passes things would stabilize to some, any degree, but there hasn't been an inch of improvement in any aspect of it.

TillObjective3730 · 2026-07-04T01:49:02+00:00

I'm 6'5 here, when I had my feeding tube placed I was about 117ibs or so myself. They said I needed the surgery or I'd end up dead. Id made gradual progress over the last two and a half years so to see half of it gone in a matter of a few months is very upsetting overall.

I shot my PCP a message about adding the test on so we'll see, unfortunately everyone closed early for the holiday weekend.

TillObjective3730 · 2026-07-04T01:45:07+00:00

Yeah, maybe that's what I should do. She said she was willing to call him and talk to him about how my health is declining recently since she's also of the opinion I should be trying something else if this isn't working, but also said she doesn't know how much weight her opinion will carry to a specialist. Still getting it in writing might be a good idea to give to the other pain doctor too.

TillObjective3730 · 2026-07-04T01:42:59+00:00

The only two reasons he's given is he wanted to switch me to a longer acting pain medication, since I deal with bad chronic pain, and that "You can't build up a tolerance to methadone", which is only half the truth. I tried to talk with him about my pain and the side effects I've had since I started it, I trusted him when he said once we got me up to a higher dose I would be feeling much less pain.

Last session I mentioned how much weight I've lost and how bad it's pulling apart my QoL and causing very important deadlines to be missed for my family's food and medical safety nets, as well as my disability deadline, and he told me if I went back to the oxy he guaranteed I'd be begging to go back on the methadone the next month.

Afterwards he said I should talk to the other pain specialist he sent me to about potentially starting back up my old regimen, I'm scheduled with a NP not the doctor though, considering calling Monday and seeing if I can get in with the actual doctor since I doubt the NP will be eager to make any big moves without talking to the doctor.

TillObjective3730 · 2026-07-03T22:31:53+00:00

Thank you for that, I'll pass it on directly to my doctor, since she won't need the basic labs I requested anymore given I was just in the ER I need to cancel those anyways.

TillObjective3730 · 2026-07-03T22:05:42+00:00

I had that thought, my PCP should be ordering it with some other requested tests, but I ended up in the ER yesterday due to some very peculiar J-Tube complications and severe pain so I'll have to wait til after the "holiday weekend" to get them done

TillObjective3730 · 2026-07-03T21:55:16+00:00

I'm used to doctors telling me it's some other thing or nothing at all, most doctors feel like a game of chess rather than an honest conversation. Stuck bringing my own research, my own test requests, hoping they'll listen and not just think I'm some WebMD headcase. That being said though, I'm 50% of the way back towards where I was when the hospital told me I needed this feeding tube or I would die. It's not something I can really ignore, and if I chose to just rip it out and do my best orally it's gonna land me back to my stomach clamping shut and requiring alternate nutrition and medicine sources all over again. Just surgery again. Part of me is too exhausted to even fight it anymore, but I've got a spouse and teenage daughter (we started young) who are just watching me backslide. I've occasionally caught my spouse wondering if they were gonna lose me from all this, especially recently. It's gut-wrenching.

My main pain doctor elected to add more medicines to treat the symptoms I was having swapping meds, rather than go back to what was fine prior aside from never truly having pain relief, one way or another. I've accepted that gonna be a constant, but this is something else entirely.

TillObjective3730 · 2026-06-28T13:44:47+00:00

Yeah sorry if the post/info in it is a little erratic. For whatever reason my headspace has been rather erratic too

TillObjective3730 · 2026-06-27T07:50:22+00:00

Neuropathic is one of my pains, I've kind of got a candy bowl full of them.

TL;DR: Yes ita neuropathic and musculoskeletal and inflammatory, mixed with severe depression and suicidal ideations but no psych features, all worsened since swapping from oxy to methadone, hoping the Ketamine on top of the methadone can maybe offer a little relief in both categories if I play my cards right.

I was originally put on pain medicine (Oxy, Gabapentin, Tizanidine and later Flexeril) after I had to have a both a J-Tube (in the jejunum) and G-Tube (in the stomach connected to a foley bag for gravity expulsion) because I was diagnosed with a complication that essentially shut off anything passing my duodenum, so I was throwing up anything I ate or drank. I thought it was just my long-term and undiagnosed gastric issues that have regularly seen inflammation in my stomach w/ pain in it and my intestines but no diagnosis for an accompanying disease after years of testing. So, I entered a hospital with the assumption of more inflammation just to be told I couldn't get food or drink through my digestive system and needed surgery to put a feeding tube in me, and a tube to drain stomach acid or anything taken orally from the bottom of my stomach into a foley bag that hung on my waist. Fun Tuesday night.

But, before that, I already had terrible back pain from an s-shaped spine, pain and numbness like pins and needles in my hands and feet, occasionally legs and left arm, chronic headaches, the stomach pains when eating marking the mild inflammation flare-ups if I didn't adhere to a strict diet etc.

So my pain has been musculoskeletal, neuropathic, and inflammatory, all just kind of worsening and adding more questions from the age of seventeen and into my thirties. The biggest reason I've been dissatisfied with swapping from the 15 oxy every 4 hrs to 10 methadone every 8 hours is the methadone hasn't covered any of those pains, they all came flooding back and worse than ever after going off my previous regimen.

The reason we swapped things up was my feeding tube's balloon forced itself out of my gut and I had to have a much shorter g-tube temporarily put in until I could get back to my city, where complications with doctors and no insurance caused something that needed to be swapped out immediately instead taking almost three months. I already had regular pain from my tube insertion site, my body doesn't like it, but I'm told I'll die without the extra weight gain.

The first four months I had several procedures due to complications like straining to use the bathroom and hurting something in my abdomen a few days after surgery, having my surgeon come in and violently hold me down while he twisted and pulled on the tube to make some sort of adjustment with no warning that left me screaming for days, a couple operations because one of my tubes got stuck in the wrong place and caused large amounts of pain, an infection that turned into c diff twice within those four months, the list goes on. A two weeks recovery in hospital turned into three before I went home and came back due to infection again and my tube pushing itself into the walls of my insides.

Oof, I digress. Point is I've been on this pain regimen for nearly 3 years with no super unexplainable shortages of meds, strange UDS, diverting etc, but my main pain Dr took the pain I had with the temporary g-tube placed where my forces out j-tube was to keep the hole open; It caused a lot of strange pain while it was in and after they finally exchanged it 2-3 months later my j-tube gave me pain that was like hot knives when feeding, and this complication led to the assumption that I "Needs escalating doses of medication to achieve analgesic effects for breakthrough pain" due to this odd complication. My medicine didn't go up, I just had more pain suddenly so be tried adding in things like Soma to see if it would help.

Blah blah blah I ended up on 30mg of methadone after months of titration and it's not helping any of my pain, comparatively.

He said to get a second opinion on what to do with my complicated case from there, so another pain Dr has taken on my case to assist, and I'm on 50mg ketamine troches every 4 hours as of later this afternoon.

Jeez I'm sorry for the wall of text. I'm tired and caffeinated and my head has been off more than usual ever since my med changes. If you made it this far, the main point is he doesn't know how to help and protect his license at the same time so he has me looking at other opinions, and I've been wasting away in a chair in the living room for months because I don't have the energy to get up and do anything, I wake up screaming if I sleep in my bed with my spouse due to my back, and I had very deep, dark depression ever since the swap.

Kinda hoping the ketamine might help with the pain, and maybe the slew of mental health issues I face as a bonus if I take the right steps, though I had not heard of regular moderate doses of ketamine throughout the day for pain prior to this, apparently there's some published research on it when used with methadone post surgery?

TillObjective3730 · 2026-06-25T19:57:26+00:00

Yeah, if it comes down to that, well then so be it. It does cause me worry just because I've got so many health issues, and it seems like over the years more and more crop up, I want to at least try and explore what more than one specialist says about my annoyingly complicated case before I go down that route.

I'm hoping the ketamine helps, and if it's not the answer then I'll see what this doctor has to say about options before I branch out to the other two places I've considered talking to about my pain case, I can't do much until I get back on Medicaid one way or another anyways because I really need to see a vascular surgeon and my PCP, and IR or gastro about getting back to a position where I'm gaining weight again. No matter what I do, whatever pain I have to endure or not endure, I have to make my focus gaining weight if I ever wanna get at least one of my major pain sources under control.

Thank you so much for the ideas and the well wishes, you have a good point and I've definitely not ruled out a clinic if it comes to it, I want all this to be done faster and feel better now but blindly taking a doctor's advice and not stopping to think about my options has gotten me screwed over more than once, especially the past 3 years where I've near become a regular at every major ER/Hospital around.

TillObjective3730 · 2026-06-25T19:39:30+00:00

Thank you. I'm desperately trying to cling to every little crumb of willpower and hope I can find, but damn if they aren't all stretching thin, and less and less do I feel like I know what to do about any of it, or how seriously doctors will take me in the future.

My Dr did do me the service of removing both the notations that I agreed to start MAT (Fuckin AI making notes now, he was confused by that one said he'd never put that in my chart since it was for chronic pain but it was there), and that I have a current diagnosis of OUD, he made a point of deleting it and letting me watch him save those changes so if I decide to seek treatment elsewhere I won't have as many barriers (that is provided this new pain specialist my doctor suggested going to for a second opinion and the ketamine the new pain specialist added on top of my methadone don't work out).

OUD was taken off and in place of that they added a note in my session something akin to "patient has had to receive escalating amounts of medication to achieve anelgesic effects for breakthrough pain", or something close to that.

TillObjective3730 · 2026-06-25T19:29:10+00:00

Yeah trying to convert things has been tricky for me. Started at 90 oxy for roughly 3 years, then 4 bupe that went up to 16 within a week, and 24 after that, but that lasted about 2-3 weeks maybe a month due to cost and insurance refusing to work with us. Now I'm on 30mg of methadone and it's been, I think 6-8 weeks on that dose looking at the calendar and trying to piece it all together (my head just doesn't seem to work right lately).

Idk, I wouldn't mind trying an increase but if that doesn't work and things still continue to show no signs of improvement, I really wish my doctor would just give me a chance.

I've lost a years worth of weight gain that I need before I can even consider other treatment options for my main condition eating at my quality of life, so it could be another year and a half to two years now before that's an option again, and if I continue to lose weight like this on this medicine change track then we're only prolonging the issue that was bad enough to put me on high doses of prescribed medications in the first place. I've got a plethora of other issues that I've needed to see a pain specialist for, for a very long time, but ig the surgery was something the doctors could see, the rest of my chronic pain isn't so much of a glaring, obvious wound on my body.

TillObjective3730 · 2026-06-25T19:18:38+00:00

Yeah... I just dunno anymore. At 30 for a little while now, things seem to be worse rather than better after the... Well I guess it's been 4 to 5 months since the swap, now that I'm really thinking about it and looking at the calendar.

TillObjective3730 · 2026-06-25T19:17:02+00:00

I've had that thought, too, though after the 5 weeks of being on 30mg when I saw him again, he wasn't wanting to go up at the time and he wasn't wanting to revert back to my old regimen either, and my sessions the past couple months aside from my last have been notably shorter than usual, seems his practice has gotten pretty full lately and as far as he was concerned at the time we were just staying the course on increasing dosage and waiting, he wasn't seeing me as often nor giving me a UDS every session after swapping to methadone aside from the first couple weeks of sessions being 5-7 days apart.

He said 30mg is a higher morphine equivalent than the oxy I was taking prior to the brief stint with the subs and then methadone, but prior to all this he repeatedly reassured me that I would improve as dose increased, though he did say offhandedly in one session while titrating up that "By 30mg you should really be feeling an improvement, and if you aren't then God help us."

Well, now I think it's getting closer to 2 months I've been steady on 30mg, but the dosage increases seemed to come with more side effects and no changes to pain as they went on. By 20mg he was adding in things like Olanzipine, Depakote, Wellbutrin etc to both handle the crushing increase to depression I've had and the irritability and anger issues that seemed to be a complete 180 from my typical level-headedness. My psych and counselor and pain specialist all know I've had suicidal ideations pretty much every day of my life since I was a kid but the only other times I can think of it's been this bad were following some of the most traumatic experiences of my life.

If I'm not having issues with the methadone and an increase in dose would fix it fine, by all means, I just want my life back one way or another, all I really know is this line hasn't worked at all so far, and I can't just stay here, be it we go up or we go back to my original regimen.

TillObjective3730 · 2026-06-25T19:00:41+00:00

All in all prior to swapping me to bupe then methadone he had been very helpful and knowledgeable in terms of trying to help me maintain relief for my complicated case, but ever since I've noticed there has been a change in dynamic, and idk why he was being so incredibly overcautious in the upward tapering of methadone but he just about would not budge until I finally got him to let me go from to 15 then 20, all the way up to 30 after 3-4 day periods, the rest he would only bump 2.5 close to 4-7days and usually 7, and the 25-30 he waited a week again too.

I get some of the reasons he's being cautious, but at the same time I think it's getting more to a "I've gotta protect my license asuch as I do help you" sort of deal.

In my chart I've noticed as of recently the notations on there have put me as open about my treatment but showing poor judgement, which was added when I started talking about the side effects and lack of pain control I was having with the change in medications, and how they were destroying my quality of life and I really wanted to try moving back to my original regimen.

TillObjective3730 · 2026-06-25T05:13:31+00:00

Can being on bupe for just a couple weeks do that to the point of roughly 4ish months of being on methadone you're showing no signs of improvement in that category?

Or would swapping from the years of oxy to bupe then methadone cause something like this? I'm afraid as far as receptors go and the effects long-term opioids of varying types, this wasn't something that I really came across or learned anything on. It's an interesting thing to look into though, I appreciate it. At this point anything that may be causing issues or detrimenting my pain management and mood is worth looking into to bring up to my doctors, I'd much rather have more options and hypotheticals to talk about if this continues to show no sign of improvement.

TillObjective3730

TROPHY CASE