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4mg hydromorphone every 4 hours, celebrex (don't remember how much), 150mg daily Lyrica, and 1000mg Tylenol every 6 hours. It never brought me down below a 7 except for one day.
8 hour plane to a different province so I have to go local.
Hydromorphone is a strong drug for most people, but not everyone reacts to painkillers in the same way and it looks like you need to try something else. It may take a few tries to find something that works, so I hope you have access to good doctors who are prepared to try.
I've tried tramadol, codeine, oxycodone, and hydromorphone so far. IM hydromorphone has done the most for me so far, brought from a 10 to a 4. But they only let me have it once, and they didn't send me home with any. It's literally in my file that it's the only thing that worked and they still wouldn't give it more than once.
I know for a fact that buprenorphine works 100% because I had it when I had my ffs and it worked really well. But nobody will give me even that. I look like a drug seeker and I'm not it's just nothing works for me
I think those are all opiates. It’s not just how strong they are, there’s other types of drugs. You may have a genetic immunity to them.
Some doctors, and entire countries, are really bad with pain control.
Canada lol. Doc said I can't take anti inflammatories, and Tylenol did nothing, Lyrica is minimal, so opioids are all that's left. Thank you
Yeah, another name for it is Dilaudid. (Recovering opiate addict speaking.) Its a highly potent painkiller but not particularly long lasting. OP might do better with something with extended release. I hope they help her.
Fellow extreme pain sufferer here, though it seems you may have me beat. I’m so sorry, I wish I could give you a hug... and some painkillers :( Here’s the best advice I can offer from over a decade of trial-and-error across SRS, FFS and BA:
Have you tried hydrocodone / Vicodin? Only common opioid you didn’t mention. You said you’re in Canada which means cannabis/THC is widely and legally available. THC stacked with opioids is known to amplify the painkilling effects of opioids, even though it isn’t a great painkiller on its own. Also reduces opioid nausea and might make it easier to sleep (hydromorphone can mess with sleep).
I don’t understand why they’d say no anti-inflammatories till later; I’ve never encountered a surgeon, for SRS or otherwise, saying no to drugs like ibuprofen early postop unless you have a medical contraindication like ulcers. It sounds like you’re severely in harm-reduction territory here; a few hundred milligrams of ibuprofen a day isn’t going to hurt anything, but can help take a small edge off the inflammatory component of the pain.
You’ll likely encounter resistance from doctors to taking opioids for as long as you actually need them; I needed opioids for weeks after my FFS for the chin pain and had some nail-biter moments on getting more opioids to be able to handle it. The pain will likely switch from more “inflammatory” to “nerve” over the coming weeks; a doc unwilling to prescribe more opioids may instead be willing to prescribe a nerve pain drug like gabapentin. Note: not safe to mix with opioids.
Numbing cream like EMLA is prescription-only but otherwise should be fairly easily available from most doctors. Lidocaine-only is useless, don’t bother. It has to have lidocaine and prilocaine. Give it “infinite” time to sink in, as in 2+ hours. Put it on super thick, it isn’t sunscreen. It’s not a miracle on its own, but it’ll greatly dial down the pain in the first few millimeters of tissue it’s in contact with. It can help with dilation if it’s unbearable otherwise ( with caution , because you can’t feel what you’re doing) and could be applied over incisions to make them “burn” less.
Above all else, please make sure you don’t overdose on acetaminophen / paracetamol; the limit of 4000 mg/day already starts to be quite a load in your liver if you continue it for weeks, and the safety margin becomes quite narrow. Get some N-acetyl cysteine (NAC), an OTC supplement, which is the antidote for acetaminophen poisoning.
Feel free to DM me or ask further questions here. I really hope it becomes more bearable soon. <3
They wouldn't let me try Vicodin unfortunately.
I regularly take THC but was told no smoking for 1 month... Edibles give me intense chest pain. I have a vape but that can still mess with things afaik.
I already take Lyrica (gabapentinoid) and mix it with my hydromorphone with success. I woke up with incision/surgical pain and nerve shocks right when I woke up. If I take 4mg Hydromorphone, 50mg lyrica, 1000mg Tylenol, and 400mg ibuprofen all at once, I can bring my pain down to a 4 or 5 🙃🙃
I have emla cream, I can just put it on my dilator/incision?
That’s a good painkiller cocktail… does that make it completely bearable for the first couple hours after dosing, and then drop off from there? Or is the peak painkiller effect still not enough?
Definitely avoid vaping. Have you tried CBD edibles? At tens of milligrams it may help.
I’d try asking again, if possible. I’ve literally gotten to where I was begging for opioids through gritted teeth and tears and becoming incoherent before they gave me any. Unfortunately the opioid addiction fears now have doctors so risk-averse that they basically need to see genuine suffering with their own eyes before they’ll prescribe them.
Local anesthetics should ideally be avoided since they interfere with blood flow (albeit temporarily), but if we’re in harm reduction territory and doctors are refusing to help you, so I’d apply it whenever the pain becomes unbearable. Note that EMLA’s absorbed dramatically more effectively on mucosal and broken skin (thus all the warnings about only applying it to unbroken skin), so if applying it to a dilator we’re talking a pea-sized amount and letting it spread everywhere.
Definitely be on your surgeon’s case every day about this. It may be “rare” but it isn’t zero people with pain like this, and doctors/surgeons need to know that their procedures are for some people dramatically more painful than they think they are.
The peak still isn't enough, but enough for me to fall asleep if it lasts long enough.
I'm already home so I can't get more unless I ask my family doctor, who isn't available until Tuesday.
I didn't know it was rare to have pain like this... I wonder why. It was like this with FFS too, ironically buprenorphine is the only thing that worked then (ironic because it's used in opioid addicted people, and I don't touch them other than codeine once in a while for migraines)
Yes, it’s rare. Rarer still for most opioids to not work. But rare doesn’t mean never.
See this recent post that raises a number of important questions on why trans people tend to cluster around a set of seemingly-unrelated, “relatively rare” health conditions: https://kate.meyerhome.net/blog/2023/meyer-powers-syndrome-lenore-syndrome
Gonna get technical for a moment: It just occurred to me that the two opioids you found worked best for you, hydromorphone and buprenorphine, have in common no “O-methyl” group on their aromatic ring. The rest, including tramadol and oxycodone, do. Do you know if morphine worked, at any dose? I wouldn’t be surprised if you have a mutation in your liver enzyme CYP2D6, though if codeine still works for you then you at least have partial CYP2D6 activity (or you just had codeine + acetaminophen instead of pure codeine). But it could be just as possible you have an opioid receptor mutation (a “polymorphism”), or some other mutation in your nociception (pain detecting) pathways.
“Genetic predictors of the clinical response to opioid analgesics: clinical utility and future perspectives” https://pubmed.ncbi.nlm.nih.gov/15530129/
This kinda stuff is my special interest :)).
I will mention that codeine/acetaminophen/doxylamine tablets work well for my migraines, not pure codeine phosphate which I've never tried.
Yeah that's really interesting. I could see if I could convince my doc to go give me 1 morphine on an experimental basis, though, I had it IV while I was in Mexico and it worked okay. Made me pass out but I was still in pain.
Mine too… partly out of necessity. ;)
Buprenorphine is a much more potent mu-opioid agonist than morphine or even hydromorphone. I have to wonder if you’ve got a mu-opioid receptor mutation that makes only the more potent mu-opioid agonists effective for you. In that case, fentanyl could be another option for now or the future (before anyone jumps on me, when dosed at therapeutic levels supplied from a pharmacy it’s not less safe than the other opioids being discussed here). Given all the above, if morphine also works for you it’s more likely you have the aforementioned CYP2D6 enzyme mutation. If it doesn’t, that would lend evidence to having a mutation in your mu-opioid receptor. But again, you could also have both.
Perhaps you could also have extra copies of, or SNPs related to, one or more of the UDP-glucuronyltransferase genes, which would make your liver extra-efficient at the glucuronidation pathway used for morphine and hydromorphone metabolism (which ruins their analgesic activity). It might be worth genetic testing, because these enzymes also metabolize numerous other useful drugs, including acetaminophen, as well as (sex) hormones.
See ”Genetic factors affecting gene transcription and catalytic activity of UDP-glucuronosyltransferases in human liver” : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4168829/
Lidocaine interferes with healing.
… which is why I would not suggest it if the situation were not desperate, as it appears to be for OP. Lidocaine can temporarily reduce blood flow; medical / pain PTSD can massively impact quality of life or willingness to access medical care for years to come.
How soon after surgery did you fly? I was 11 days. I did 5 hours flying, an hour layover, another hour flying, and an hour and a half driving. (BC interior). Gobbled Tramadol and OxyContin. Wore Depends, sat on changing pad. No accidents on trip.
Partner was with me, she handled everything and I sat in a wheelchair. Flew business class.
2.5 hours flying, 5 hour layover, 15 minutes driving. They refused to give me any tramadol but they did give me Hydromorphone, but that didn't do anything either. Just got back from ER and doctor said all the sitting and standing must have pulled on the wound too much.
I’m glad we could take extra time before travelling. I think it made my trip easier. Hope you recover soon.
Sorry you are in that much pain, i know the feeling.
Hoping A&E can get you some medication that actually works x
:) see my day 10 update
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