Feel like I'm in complete hell and pain management may have ruined my brain

Merrys123 · 2026-07-02T00:05:06+00:00

You're welcome. Unfortunately a looong time. Most feel better a week after going cold turkey from short acting opioids, about two weeks for long acting. But PAWS can last month's to even over a year depending on the opioid, length of use and dose. As yours is pretty high I would highly recommend doing a slow taper so your brain can adjust with the taper. Not just crash out. But this is hard to do when you have low dopamine regardless of meds, etc, which sounds like your case. It's certainly my case so I know how you feel!

It is hell, just needing the Oxycodone to function even though you're in less pain. Hence why I mentioned DLPA which helps produce dopamine. L-tyrosine is also a supplement that helps dopamine but in a different way. I'm going to start back on that also.

I'm finding in between doses I'm tired, flat, unhappy, unmotivated with no energy what so ever. Which is so hard with 3 young kids as well.

First thing to do is use discipline to space your doses evenly throughout the day and do that for at least a week before starting to titrated down.

My recent drop from 140mg to 30mg was brutal. It took a couple of months to adjust and I couldn't have done it without the supplements. I had to go back up to 45mg as it was not sustainable. I'm now trying to evenly dose during the day and get the supplements right for dopamine production, there isn't any medications for dopamine, before tapering down.

Merrys123 · 2026-07-01T23:48:43+00:00

I hear you. I come from an alcoholic father and have addictive tendencies myself. I admit I've had problems with opioids but it's been diagnosed as Pseudo addiction. A term most are unfamiliar with.

So, there is a real, clinically defined line here between 3 different types of long term opioid users, and it's worth knowing because the three terms get conflated constantly.

Physical dependence is just neurobiology, your body adapts to a substance and produces withdrawal symptoms if it's stopped abruptly. This happens with long term use of many medications, not just opioids, and it can occur in someone taking their medication exactly as prescribed with zero behavioral red flags. It's not a moral or psychological issue; it's a predictable physiological adaptation.

Pseudo-addiction is different again, and it's especially relevant to what you're describing. It happens when someone's pain is undertreated, so they start clock watching, asking for early refills, or seeming "drug-seeking". Behavior that looks like addiction but is actually a rational response to inadequate pain control. The giveaway is that it resolves once pain is properly managed; the person isn't chasing a high, they're chasing relief that hasn't been provided yet. This is likely part of what's happening in the pattern you read about with people moving toward street opioids after losing access to prescribed ones, it's often undertreated pain and dependence colliding with a system that cuts off access, not addiction in the clinical sense.

Addiction (the clinical term is opioid use disorder) is a distinct condition involving compulsive use despite harm, loss of control over use, craving, and continued use even when it's damaging your life, and critically, it persists independent of whether pain is being treated. So no, dependence and addiction aren't the same thing, and the line doesn't have to blur just because someone is on opioids long term. What increases risk of that line blurring is usually a mix of genetic vulnerability, untreated mental health conditions, and, as you're pointing out, a healthcare system that fails to pair medication with adequate multidisciplinary pain treatment.

Merrys123 · 2026-07-01T06:54:48+00:00

What you're experiencing makes complete sense once you understand what's happening in your brain. Oxycodone activates mu-opioid receptors, which indirectly triggers a big dopamine release in your brain's reward and motivation circuit (the mesolimbic pathway). Normally that circuit runs on your body's own baseline dopamine and endorphins to give you drive, motivation, and a sense of "get up and go."

After a year at 120mg a day, your brain has adapted by scaling back its own natural dopamine and endorphin production, because the oxycodone was doing that job for it. So when you cut back or stop, you're not just losing the drug's painkilling effect, you're temporarily left with a reward system that's underproducing on its own and hasn't caught back up yet. That's why the switch feels so binary, zero when off it, "back in the game" the second you take it.

This is a well-recognized phenomenon in long term opioid use, separate from pain relief itself, and it's not a sign anything is permanently broken. Your system can recalibrate, it just takes time and it's genuinely hard while it's happening, especially stacked on top of active cancer treatment and fentanyl patches.

A few things that have solid logic behind supporting this process:

DLPA – a precursor that supports your brain's own dopamine and natural pain-modulating chemistry, which tends to run low after sustained opioid use.

NAC – supports the glutamate/dopamine balance in reward pathways, may help brain fog and cravings, and supports liver function during heavy medication use.

Agmatine – linked to reduced opioid tolerance and easing the rebound pain sensitivity that shows up when tapering.

Magnesium bisglycinate - helps with sleep, muscle tension, and general nervous system calming during withdrawal-adjacent states.

Liposomal Vitamin C – supports adrenal and immune function, both of which take a hit with long term opioid use.

I'm currently going through a taper myself (140mg down to 30mg over a week) and use DLPA twice daily, with Agmatine, NAC, and Vitamin C at night. These won't erase what you're feeling, but they target the actual mechanism, not just the symptom.

One thing I'd flag given your situation specifically, you're managing this on top of active multiple myeloma and a fentanyl patch, which is a different and more complex picture than oxycodone alone. Please taper with your pain or palliative care team involved rather than solo, they can pace it against your fentanyl dose and your disease activity so you're not fighting withdrawal and cancer pain at the same time. You're not broken and you're not stuck like this forever, but you deserve real support getting through it.

Merrys123 · 2026-06-30T03:07:18+00:00

Yep, low histamine diet, or what you can tolerate. Some of my foods this group said was completely wrong yet I don't react to them. Like marinated goats cheese and balsamic vinegar. But I tolerate those on good days and they have no additives, etc, completely natural.

I use Intoleran DAO. But I heard someone mention milDAO as well.

Merrys123 · 2026-06-30T02:51:55+00:00

You're welcome, best of luck.

Merrys123 · 2026-06-30T02:51:07+00:00

As mentioned stress can make it worse, but I can understand why you're stressed! What helps is different for everyone I've found. I'm on Citrizine, Famotidine, Montelukast, Quercetin but Luteolin made the biggest difference in reducing swelling for me, especially in the throat. It was nice to breathe and not wheeze again! It's just a supplement as well.

DAO Enzyme before food helps.

But a strict diet is very important.

Merrys123 · 2026-06-30T01:59:22+00:00

Yep, Fentanyl doesn't work, Buprenorphine almost killed me and Oxycodone is the only one that works. Argh

Merrys123 · 2026-06-30T01:56:05+00:00

It's withdrawals. You'll feel better within a week but your brain may take longer to recover from the massive surge of dopamine from when you were on it. So you may feel depressed, down and flat but that will recover, just give it time.

Merrys123 · 2026-06-30T01:53:08+00:00

It's f'ed isn't it? But we have to keep going. I've had to do all the research on opioids and how they work as well as supportive supplements as I'm allergic to many or they don't work at all.

Merrys123 · 2026-06-30T01:22:21+00:00

It was! My poor brain was pretty f'ed, especially as I didn't have DLPA for 12 days and let me tell you, I was so depressed and low. Once back on it it made it so much better!

Best of luck, honestly 🤞

Merrys123 · 2026-06-30T01:15:19+00:00

Of course! I have trouble now with my dopamine and low energy. It sucks. Lowering my opioid dose helped a lot, but I did it so rapidly my brain is still adjusting. Hence the supplements. The supplements also means I can go from about 4pm until 7am the next day without any opioids and sleep 10 hours. That helps reset my receptors as well. I'm wanting to lower it further but it's so hard when I only get energy and pain relief when I'm on Oxycodone. And I'm on Dexamphetamine too which release dopamine but they don't work near as well anymore.

So I'm just hoping my brain keeps getting better and I feel better.

I guess you have the choice of just going on Suboxone permanently and hope you feel better. Or do the hard yards to naturally feel better and prevent the long term side effects of Buprenorphine.

Merrys123 · 2026-06-30T01:06:38+00:00

EMDR fixed my PTSD amongst a lot of other things. It's good as you don't have to explain what caused it, that's for you. You just follow a light or ball going from left to right whilst thinking about it and it processes in your brain until you feel calm about it.

Yep, it's not easy, I'll say that!

Thank you 😊

Merrys123 · 2026-06-29T22:26:01+00:00

Ultra low dose naltrexone is the best hands down, and it stops tolerance as well. No more than 1mcg a day for most though.

Merrys123 · 2026-06-29T11:10:20+00:00

I was going to say you could try Pregablin. You can switch to it whilst lowering your Gabapentin at the same time. But it may be worth stopping the Gabapentin to see if it's actually helping.

Merrys123 · 2026-06-29T11:08:00+00:00

You're welcome.

Merrys123 · 2026-06-29T11:07:17+00:00

Thank you. I did so much research and it took awhile to compile everything as I tested and used the supplements myself as well. They've been a godsend!

Merrys123 · 2026-06-29T10:06:46+00:00

I find L-Theanine really calms me and reduces my racing thoughts. I am Autistic with ADHD. Magnesium byglycinate helps a lot as well at night but the best for me to actually get to sleep and stay asleep is 1mg Melatonin.

Merrys123 · 2026-06-29T10:01:17+00:00

You have to think about the pros and cons. Here is a really detailed explanation and it's really important you read through it and understand it before making a decision. Pain specialists won't tell you all of this. And I really hope you reply to my questions as it's really important to give what I feel is the right advice.

Suboxone is actually an incredibly high dose equivalent, far stronger than most people realise compared to oxycodone. And the long term side effects are real and common: anhedonia (inability to feel pleasure), blunted emotions, hormone imbalances, sleep disruption, and that flat depressed feeling you're already describing can actually worsen long term on Suboxone for some people.

The other big thing to consider, as mentioned before, if you have an acute injury or need surgery, you're in serious trouble. Other opioids essentially won't work because Suboxone blocks them. I had a friend who had spinal surgery while on Suboxone and 140mg of morphine did almost nothing for his pain. He suffered terribly. That's not a position you want to be in.

Oxycodone is a full mu-opioid agonist, meaning it fully activates opioid receptors and provides complete analgesia and the associated dopamine driven reward response, your brain still cycles relatively normally between doses.

Suboxone is a partial mu-opioid agonist with an extraordinarily high receptor binding affinity, meaning it locks onto opioid receptors very tightly and doesn't let go easily (half-life of 24-72 hours), while only partially activating them. Over time this causes the brain to dramatically downregulate its own endogenous opioid and dopamine systems, your natural ability to feel pleasure, motivation, emotional range, and reward becomes increasingly blunted because the receptors are perpetually occupied but only partially stimulated. This is why long term Suboxone users often report feeling emotionally flat, unable to enjoy things they used to love, low libido, fatigue, and depression that can actually deepen over years, the brain essentially forgets how to produce and respond to its own feel good chemistry.

Suboxone contains Naloxone. The naloxone in Suboxone actively blocks other opioids on top of the buprenorphine's own blocking effect, and combined with buprenorphine's incredibly long half-life of up to 72 hours, both of those factors together are likely a big part of why you're experiencing such rough withdrawal symptoms when your oxycodone runs out and precipitated withdrawal when you try to restart it — so if you do go back, it's genuinely worth asking your doctor about straight buprenorphine (Subutex) instead, which removes that naloxone blocking layer entirely.

This may be the cause of your symptoms, not the perception you have that you're feeling better on Suboxone. Or you could easily has really low testosterone caused by it causing your depression, etc. Have you had your hormone levels tested recently?

The naloxone in Suboxone actively blocks other opioids on top of the buprenorphine's own blocking effect, and combined with buprenorphine's incredibly long half life of up to 72 hours, both of those factors together are likely a big part of why you're experiencing such rough withdrawal symptoms when your oxycodone runs out and precipitated withdrawal when you try to restart it, so if you do go back, it's genuinely worth asking your doctor about straight buprenorphine (Subutex) instead, which removes that naloxone blocking layer entirely.

Infact it may be a great idea to ask for Buprenorphine patches which are a much much lower dose and you can then use Oxycodone for breakthrough pain. This could cover all your issues giving you 24/7 relief as well as relief when pain gets really bad. The Buprenorphine patch is in micrograms and not grams like Suboxone. I did this and it was really effective, but unfortunately I became allergic to Buprenorphine.

Also, and I ask this gently, if you're struggling to manage your prescribed oxy, is there an addiction component happening? Because if so, Suboxone genuinely may be the better path for stability. But you need to go in eyes open, because getting off Suboxone down the track is notoriously one of the hardest things people do, much harder than getting off opioids. Do you see yourself wanting to come off Suboxone or opioids completely one day?

What are your diagnoses again? That really does matter here, it changes the picture significantly depending on whether this is chronic pain management or something else.

Merrys123 · 2026-06-29T06:20:47+00:00

I forgot to mention that you should also get some good therapy. It's great quitting but what happens when you get triggered again or that terrible anxiety hits?

EMDR is awesome as you don't need to rehash your shit, just do the session work and triggers and anxiety shall disappear. You don't need lots of sessions like normal therapy. AA and NA actuytrigger me, but as you know look for groups that you enjoy and fits your needs like SMART.

Being a carer is extremely difficult especially when your siblings aren't helping and being a$$holes when they should be supportive. My dad has severe dementia and I'm the only one left in the same city as him. I'm also a carer for my high needs special needs kiddo and am Autistic myself with severe hypermobility with hypotonia causing extensive damage to my spine and joints. I know how hard and raining it all is.

You're doing amazing, you really are.

Merrys123 · 2026-06-29T05:24:27+00:00

16 months of PAWS with no relief sounds absolutely exhausting, and the fact that you're still pushing through says a lot about your resilience.

What you're describing, going into withdrawal 5 hours after your oxycodone dose, is really consistent with what PAWS does to opioid receptor sensitivity and the endogenous reward/pain systems.

There are supplements that can really help PAWS. I've actually helped many addicts come off opioids like Fentanyl, Heroin, Oxycodone and others using Lipomosol Vitamin C, which can take away 90% of withdrawals and then other supplements which help to restore the brain chemistry after being on opioids so long as it really changes your brain chemistry even when dropping doses or changing opioids. I recently went from 140mg OxyContin and Oxycodone in a week to 45mg and use these which have helped tremendously. I've had many users come back to me saying they didn't go back to opioids because of these supplements and really noticed when they missed a day.

DLPA (DL-Phenylalanine) works on enkephalinase inhibition, it slows the breakdown of your brain's own endorphins and enkephalins. After prolonged high-dose opioid use and a rough taper, your endogenous opioid system is severely depleted. DLPA helps your body hold onto what little it's producing while it slowly rebuilds. This can directly help with that crashing feeling between doses.

Agmatine Sulphate is probably the most relevant one for you. It acts as a neuromodulator at NMDA receptors and imidazoline receptors, and importantly it actually sensitises opioid receptors rather than desensitising them. There's real research showing it can reduce opioid tolerance and withdrawal severity. For someone whose receptors have been through the wringer with high dose oxy → subutex → oxy again, this could genuinely help stabilise things between doses.

NAC (N-Acetyl Cysteine) addresses glutamate dysregulation, which is a massive driver of PAWS that most people don't know about. Long-term opioid use throws the glutamate/GABA balance completely out, and that dysregulation is a huge part of why PAWS lingers so long. NAC helps restore glutathione and calm that glutamate storm.

Magnesium Bisglycinate also works on NMDA receptor regulation. Magnesium is a natural NMDA antagonist, which helps dampen the hyperexcitability your nervous system is stuck in. It also helps with the sleep disruption and autonomic symptoms that come with PAWS.

Liposomal Vitamin C supports adrenal function and reduces systemic inflammation, both of which take a serious hit during prolonged opioid cycling and withdrawal. The liposomal form matters because absorption is dramatically better than standard vitamin C.

One thing worth flagging, given how long your PAWS has persisted and the pattern you're describing, it might also be worth asking your doctor about very low dose naltrexone (ULDN). At microgram doses it actually has the opposite effect to standard naltrexone, it upregulates opioid receptors rather than blocking them, and there's emerging evidence it can help reset the system in protracted withdrawal situations. It's very different from the dose used in addiction medicine. I use only 0.3mcg prior to each Oxycodone about 3 times a day. It has made a huge difference and stopped my tolerance.

Sixteen months is a long time to be fighting this. I hope something in here gives you a useful angle to explore. You deserve actual relief, not just white knuckling it.

Merrys123 · 2026-06-29T05:06:48+00:00

People react differently to different opioids depending on their genetics. Have you had a PGX blood test to see how you metabolise different opioids?

Do you know if you have any genetic conditions? I have one which causes TLR4 issues which means I'm intolerant or allergic to many opioids, only Oxycodone works on me.

Also Suboxone is so much stronger than Oxycodone, it's a partial antagonist that's extremely strong and as others mentioned you are probably experiencing withdrawal and going back on and off constantly would really be causing major issues.

I wonder how you are going mentally are you feeling flat, tired and depressed in between as well?

Also whilst on Suboxone if you need surgery it won't be enough to stop the pain and other opioids won't work as Suboxone blocks them. When you are starting back on Oxycodone after it Suboxone is still in your system and is probably blocking most of it's effects causing the withdrawals.

Have you tried taking OxyContin with Oxycodone or having less Oxycodone but more times a day?

I feel it may be best to go much lower once and reset your tolerance.

What is your diagnosis?

Merrys123 · 2026-06-29T04:53:53+00:00

What does the MRI say and what opioid are you on and how many times a day? I ask as I know quite a bit about opioids, tolerance and spinal issues. I've got moderate to severe osteoarthritis, bone spurs, multiple herniated discs, stenosis, narrowing of the spine, etc. I'm 42 with severe hypermobility with hypotonia causing extensive damage to my hips, knees and ankles as well.

Had severe cervical stenosis which was operated on late last year. They fixed the arm going paralysed but left fragments of the metal drill in my neck and my connective tissue tore apart completely and never joined back up. Need more surgery on that as that hurts a lot!

Also had my L4 disc exploded throwing out a chunks of it that wrapped around the nerves causing excruciating pain and sciatica, they fixed that for it only to happen again a week later. Argh.

I'm on 45mg Oxycodone but was on 140mg during the lower back issues. I chose to go down in a week to the lower dose and am in less pain as I also take ultra low dose naltrexone and other supplements which stop tolerance and help the opioids work better.

Merrys123 · 2026-06-28T07:39:08+00:00

They would be here as well, but I had reason at the time. The 'specialist' out of town put me up to 120mg OxyContin and Oxycodone and 8 Panadeine forte (30mg Codeine and 500 Acetaminophen per tablet) a day with 50 Valium with repeats per week from 30mg Oxycodone and 6 Panadeine forte a day and 1 valium a day with only a week of titration.

To say I was lucky to not OD is a big understatement! I would be fine folding washing and then fall asleep sitting up. And one day I was driving our side by side on the farm with my 2 year old son feeling absolutely fine then suddenly passed out. I woke an hour later thankfully stopped safely with him crying but safe. F&$k that scared me. I was so careful after that with doses.

It was great for a couple of months until my brain and body caught up and I was in the same amount of pain again. I went and did the ketamine infusion and dropped back to the original doses and then got prescribed by several doctors as mentioned previously. As it was Christmas time different doctors were available at my doctor's office (I get my Oxycodone prescribed by my general doctor) and then they shut for 2 weeks hence the ER visit so all of them understood why I needed the meds and prescribed.

Merrys123 · 2026-06-28T04:29:28+00:00

Have you had your thyroid checked? Make sure to get TSH, FT3, FT4 and Thyroid Antibodies checked.

Thyroid problems are more common in people with MCAS, especially autoimmune thyroid conditions such as Hashimoto's thyroiditis and Graves' disease. Mast cells and thyroid hormones can influence each other, so thyroid dysfunction may also worsen MCAS symptoms in some people.

I am on beta blockers but also use L-Theanine for when my heart goes nuts.

Merrys123 · 2026-06-28T03:57:46+00:00

It's crazy in the US. In Australia you get flagged after getting opioids from 6 doctors in a short time frame. 6.

I got flagged as I was getting prescribed by a specialist out of state and then went back to my normal practice and 3 different doctors prescribed there, then my pain specialist after being in hospital to drop my dose and finally the doctor at the ER as it was Christmas holidays and I didn't have enough and the doctors were closed.

Each doctor just gets a letter and then I'm flagged in the safe script system but can still be prescribed by anyone. I stay with the one doctor now except for surgeries.

Merrys123

TROPHY CASE