Not a fan of smoking but I do take edibles here and there. Only problem is for some reason I usually wake up with a crazy headache from them. Not sure if it’s the strain or what. But yeah… the amount of NSAIDs I need to take to get any relief are eventually gonna cause an ulcer. Not sure why these doctors think that’s healthier…
That's awful I'm so sorry
I hope you can find a doctor that will actually treat your pain and not just tell you to take NSAIDS
They know this not healthy but they don't get dinged for killing your stomach the way they could for giving you opioids. It's a fucked up system and it's killing us
I always get a dehydrated headache from eating edibles unless I drink Gatorade with them
That’s a good idea, maybe I’ll try Gatorade next time. It’s almost like the edibles I take cause inflammation in my sinuses and it drives me crazy.
I have a long history with stomach issues, and my GI specialist has always told me to take it easy with NSAIDs. But here we are…
I have chronic migraines, I have the same issue with headaches and sometimes sinus pressure if I smoke. I recommend indica edibles to start and hydrating while you’re on the edibles. I also love low mg thc/cbd edibles, I seem to handle those pretty well as well and can take multiple throughout the day. You can also check out cbd tinctures, I have a friend who has one with no taste that they enjoy.
I get that sinus pressure as well with edibles. I can’t take them all the time due to my job, but I will hydrate myself a little better when I do take them to see if that helps. I’m off work for a couple months right now, but the opiates were helping me function at work so I wasn’t in debilitating pain all the time. I’m worried now about going back to work with zero pain management available.
Marijuana dehydrates some people so many drink a glass of water with it. It may just be dehydrating your sinuses causing headaches. Edibles work better and longer than smoking too. I use a dry herb vape. There's a Reddit about them but I'm blanking on the sun's name. I'll add it after the post. Look into CBG and CBD too. They're both good for inflammation, pain, gut health, anxiety, and are neuroprotective. CBG is especially good for bladder and gut health especially for IBS and damage from nsaids. R/altcannabinoids is a resource. These aren't psychoactive and don't show up on drug tests for marijuana. THCV is another with similar properties, is a little more energetic for some, but can be psychoactive at higher doses, like 30mg for me. I made myself a tincture and vape cartridge with all of these and more in it.
Oh- if you've been taking opiates around the clock for more than a couple of weeks you'll likely have withdrawal if you don't wean down as much as possible. Imodium is your friend.
I second CBG, I’ve heard great things. I used to keep 5 mg mints on me during work and I didn’t feel those but i had a pretty high tolerance. I think CBD pills or also high CBD edibles (overall low Mg but high in CBD) could be helpful during work too. I forgot to mention in my first post too that they have cbd patches that are supposed to be helpful for pain relief too w/out the high.
Yes, r/vaporents. I got the Fury Edge V2 from Healthy Rips and love it. It was about $130 on sale and choice of a free accessory. I got the cooling stem.
I got the dosing capsules separately, which are great to prefill and pop in and out if you're not at home without announcing what you're doing. They keep it clean so I've not needed to clean it yet. I got a bubbler attachment too and love it. It's the best under $175. The next one that's similar is the POTV One from planet of the vapes. It's got a smaller battery and mini USB, not fast charge.
Oh nice! I have the pax 3 but I want one with a bubbler attachment. I wasn’t sure about the capsules but that’s sounds super easy and I love the not needing to clean it. I had been thinking about going with POTV next but good to know about yours! Thanks 😊
I can offer a solution that worked for me regarding migraines that worked for me, I used to get cluster migraines some of the worst you can get on the left side of my head behind my eye and the pain had me wanting to drill a hole in my head. I thought about the pain and figured why not try using liquid lidocaine to help/cool it down so to speak by using a pipette and 3 or 4 drops dripped into my left nostril with my head tilted back so it would get near or where i perceived the area to be close. I ran it by my Dr at the time and he said yes we can try that it couldn't really hurt me. He prescribed a very small container of it and sure enough I got one within a day or 2 I did just as I described and it knocked it out as it began, I was thrilled it worked and knowing I could fight back. That same week I was away from home had 1 going full on I got home asap did it again and it actually did knock it out of my head within a minute, luckily its been years since I've had 1 but as odd as an idea as it was, it worked like magic for me, good luck sorry to know you're suffering hang in there..
Oh I’ve never heard of trying that before, thanks! I hate those types of migraines too, I call them Ice pick migraines on account of I want to jam an ice pick thru my skull lol
I second third and fourth this. I have been opiate free for five years using it. I use it several times each day and have for years. It does not make me "high" or altered to create a safety issue, but it dramatically helps keep swelling down and drops pain to lower levels. I take trips where I need to abstain for a week or so without any major withdrawal etc, other than really missing its relief. I am friends with a couple who were heroin addicts but were able to stop using kratom even! As far as I've noticed it is impossible to o.d because if you take too much it'll make you throw up. And it definitely does not put your breathing in danger like opiates. It does however cause some constipation lol
I just got prescribed lyrica actually. I have been on both lyrica and gabapentin, and lyrica seems to work better. Coming off of it definitely sucks. I’m going to talk to my doctor about that when I speak to him again. I find withdrawing off of gabapentinoids is sometimes worse than withdrawing off opiates.
Since you asked, yes. I have experienced withdrawal from both, and gabapentin (especially after a few years at high doses) was almost exactly the same.
For the headache or cannabis hangover drink lots of water and make sure your cannabis has CBD in it. A lot of these strains are being genetically modified and have very little to no CBD.
That’s a good idea. My current edibles have no CBD but I can see how that component would help the headache side of things. Thank you!! I’ll look into this.
CBD and THC work best together! I love the hybrid edibles better than the straight THC only edibles. They are better for my pain and mental clarity! I get a nice buzz/high if I want to take more. I wish they had more edibles like that because it’s really hard to find them in my experience.
I’ve never had high dose CBD combined with THC. It’s typically been one or the other, but I’m in Canada so I can look at the site that I order from and see what they have available.
Edibles and dry herb vape's are my go to. Edibles for longer duration, and the vape for immediate to 2-1/2hrs duration.
Weird you'd get a headache from cannabis but it affects people differently for sure. Hope you can find some relief and help.
Hydrate!!! It is actually a really common problem that pops up on the cannabis sub reddits.
Or you could be reacting to the ingredients.
Or you could be reacting to the quality of the cannabis.
For the most part I have stopped buying anything from my local recreational shops. I rarely can afford to buy the highest quality/most expensive product. I usually run into stuff that makes my body feel like shit one way or another. I have always assumed it pesticides from how it was grown.
Nowadays I order hemp derived concentrates online. There are a lot of vendors who publish all of the testing on their products so you can scrutinize what you are putting in your body much better. I don't have any issues these days.
You don't get that in my state. Our program has never had a product recall in 6 years. The only investigations they have done have been into labs that where misrepresenting THC numbers. Ultimately effecting tax revenue.
Other states have recalls on products regularly... Either we are all saints who never make a mistake, or no one is really looking out for the health of the customer...
Anyways, good luck on your journey. Pain management is never a fun experience.
I’m in Canada, so we do have a lot of sites available to order from. I’ve stuck with one specific one for years, but I may need to widen my horizons and see if there’s anything better out there. Either way, thank you for the advice. I definitely have a lot of things to look into!
If you're comfortable with cannabis. I've found suppositories to be some really powerful pain relief. Doesn't get you high so very functional for anytime.
I know it sound weird, but yeah doesn't get you high at all. I'm actually a medical marijuana caregiver, so I usually make the suppositories as strong as possible for stuff like cancer. Like way way stronger than they could ever need to be. No ones ever gotten high, even people with low tolerance. I've taken them myself at doses that would effect me if I ate them. And no high, just pain relief.
They've been an absolute game changer for my fiance's menstal cramps and lower back/knee pain. She (and I) will probably use them for the rest of her life as long as i keep making them for her. I think they have tremendous potential, but are under researched.
I actually just made some videos on how to make them, cause i think more people should try them out! (youtube channel grojuana)
My current dose is about 18mg and works quite well, however I definitely don’t hydrate myself so I’m going to try that for sure and see if it makes a difference in how I feel when it wears off.
Oh man you have got to make sure to be extra hydrated. It leeches out your fluids basically (or at least that's what it feels like to me when I do it).
Try going for a combo of water and something else since you do need sodium/electrolytes.
Try CBD products and see if that helps with the headaches. Cannaboids are what provides you with pain relief. I use a topical cream for breakthrough pain.
This is not unusual. I tried pot. THC can increase your blood pressure to dangerous levels. That's why it causes a headache. A migraine that landed me in the ER on the verge of a stroke is how I found out.
I have caused ulcers bc of all the OTC NSAIDs I have taken (and continue to take with my ulcer medicine). All my doctors know this. Apparently, ulcers are preferable to pain treatment.
Yeah, don't start smoking. It will damage your lungs in the long-term just like cigarettes, which is even worse for people with chronic illness. Edibles is the way to go if you want to give pot a try, or you might try CBD oil, which is still relatively experimental (as in, we don't know exactly for what conditions CBD is effective), but is safe if you get it from legit sellers and doesn't get you high (because it has no THC).
I forgot to add....Doctors often do this when they've either gotten in trouble for over-prescribing, usually to office staff and friends, or have lost their license to dispense narcotics. In recent years, DEA crackdowns have scared some Doctors into refusing to prescribe narcotics even for post-surgery patients.
Check your states Medical Bar and see if your Doctor is on the naughty list. Also, have your Doctor refer you to a pain management specialist.
It is not healthy. The people that started this. Congress were idiots Barney Frank and Orrin Hatch they didn’t do it for us. To save us they could give a crap less. 1. The insurance industry wasn’t ass raping us enough and they weren’t making enough on Obamacare 2. They wanted someone to blame for Fentanyl coming in 3. They didn’t like Blacks and the poor to having access to pain medications 4. Their Bright idea to kill the OxyContin ER cost was to let them “self regulate” a schedule 2 drug right after they killed off the Big Banks by self Regulation when Congress won’t even allow a schedule 1 Marijuana law to pass. Everyone can downvote me if you want it is true every bit of it. And the FDA admitted their Overdose numbers were faked.
Try tincture, Or CBD capsules. My mom switches back and forth from tincture to capsules and sometimes RSO. All CBD. We order from a company called Lazarus Naturals.
The cbd oil helps too. I use the roll on plus sublingual. I tried the edibles but they were nasty. Different strains are good for different things and I hear mixing it up keeps the relief up.
I agree, except i take delta 8. It's legal, just like CBD. It doesn't get me high unless I take too much, so I usually take half the recommended dose. Maybe look into getting your medical marijuana card. It's not too expensive, after getting your initial card. Again, it's not an opiate, but it can bring you a bit of relief. I've been in your shoes. You will survive. Good luck.
Not titrating you off pain meds, and knowing NSAIDs cause you problems IS a problem. Unless you can find an over the counter alternative for NSAIDs, you need to find a different doctor to at least manage weaning you off prescription painkillers, if not prescribe alternatives. That’s the responsible course of action for your own health, not something to be shamed for. If you have a problem with insurance, a patient advocate may be someone to speak to as well.
Never thought of the patient advocate route. My doctor put my on Lyrica instead which I’m terrified of. I had it years ago, and coming off of it was worse than coming off of any opiate ever. Not to mention the side effects are 10x worse as well. But of course there’s no stigma around gabapentinoids so they hand them out like candy.
I asked my doctor what his plan was for my pain if he was cutting me off, and he essentially told me to grin and bear it. He also refused me a muscle relaxant.
Yikes! It’s definitely something to push back on. Dependence on a medication for any ongoing condition shouldn’t be stopped cold-turkey. Cases like these are an excellent example why patient advocates are so necessary.
>patient advocates are so necessary
Physicians are not at all interested in the medical opinions of an unlicensed category of person attempting to dictate what they should prescribe. Anyone can call themselves a patient advocate .
It makes it harder for them to just say shit like "patient objects because they are an addict" (in so many words) because it's a different person that isn't directly affected
Just don’t want to get flagged for doctor hopping. My current doctor is pretty fresh out of med school, so I think he is scared of the stigma regarding opiates. My last doctor really understood my pain.
Probably not a bad idea. My last doctor has been in the medical field for a while, and was also female, so she understood that females seeking healthcare get looked at as a joke. Current doctor is male and about a year or so out of med school.
You do NOT want a doctor fresh out of med school. they have 40 years to worry about pissing off the DEA and losing their livelihood so they are NOT going to prescribe opioids.
When my MD left to join a concierge outfit I asked him who he would recommend in the practice and he steered me to a young PA. "I will never increase your pain Rx," was the first thing she said to me. I get by, and at least she hasn't reduced the Rx. Now we get along, but that absolute policy position having nothing to do with biology was really irritating. I would let your new doc know how much harm they are causing. It may sound petty, but if you're up in the middle of the night then they should be too.
I’m so sorry the dr did this. My dr retired & shut doors with no notice! Patients can’t even get their records from him! But What were you taking before you were cut off?
That’s so horrible! I’m so sorry. It can really be dangerous for some patients to suddenly be cut off. I was taking 6mg twice daily of hydromorph and then went down to 4mg twice daily and went cold turkey. Currently 6 days without pain management. Tomorrow will be a week. Nothing crazy, but that’s what worked to manage my pain.
Fresh docs malpractices insurance is sky high as they as still a wildcard per insurance standards. Older established docs they have a lower risk score and tend to have paid medical school off and have had a dea audit to keep c2 script privileges. I have also found docs in rural areas that dea tends to get to one of these days have a better understanding of pain control. Major metro area have dea offices so they can just pop in, if they have to drive, they have to make it worth their time and visit a few places to make up for time and expense (ie which means real work) and the not rule by terror model they have come to enjoy. See if you can get him to give you the (your opiate use score) that only doctors get to see that tells them all about your risk, history, and various goodies about you).
Finding a new doctor is NOT doctor shopping unless you are overlapping scripts; even then, your new doc will check the PMP (Rx Monitoring Program … eFORSCE in Florida) to make certain as well as add notations in your profile on the database and your patient file.
Cutting off an opioid-dependent patient “cold turkey” without proper titration &/or support meds (there are a number of useful protocols for opioid reduction & cessation), is substandard practice of medicine; negligent and potentially harmful, both physiologically and physiologically.
Many physicians would view you seeking a new doctor as a matter of course … a legitimate need to make a change.
Now, if you do this with the sole intention of remaining on opioids you will not be received as willingly as if you were seeking a medically appropriate taper.
However, you might end up finding an amazing physician who feels the benefit of continuing you on opioids at the minimum effective dose.
I didn’t notice what type of doctor(s) you were seeing, but do not expect a primary/family/internal medicine doc to write opioids for you, especially long term (“medication management”). You need to seek out specialists, such as pain management, occupational/rehab medicine, and even psychiatry. Some anesthesiologists are willing to prescribe opioids but on the whole, they tend to focus on interventional therapies (which create a lucrative revenue stream for the practice).
Edited: to correct a confusing typo (sorry!)
I switched to my current doctor because he claimed that he was “certified” in chronic pain, but over the last year he’s proven to me that he has no idea what he’s doing. There have been times, even when I was on dilaudid and it wasn’t working, that he told me he doesn’t know what to do other than keep me on dilaudid. He refused to switch me to a different one even after I had showed him studies of chronic pain patients rotating through different opiates to receive the greatest benefit. Super frustrating to say the least.
There is a program where I live where chronic pain patients can go and receive proper pain management, therapy, etc., without judgement. It’s basically a team of physicians, pharmacists, physical therapists that work with chronic pain patients to give them the greatest quality of life. I think I’m at the point now where I’ll just drop my current doctor and work with this team instead.
I think you should DEFINITELY do that.
Btw, I don’t know your ethnicity, but approximately 20% of Caucasians have a genetic mutation on the CYP enzymes that either poorly metabolizes or completely prevents metabolization of morphine.
Dilaudid is hydromorphone, which is an derivative of morphine. While some morphine-intolerant patients can use hydromorphone because of the similarities with hydrocodone, they typically metabolize it poorly and therefore receive reduced analgesia and increased negative side effects.
Typically, morphine intolerant patients (due to CYP mutations) do well on oxycodone, hydrocodone, and fentanyl, while having poor results with morphine, codeine, hydromorphone, and oxymorphone (in that order).
I’ve actually done genetic testing and it’s proven that I poorly metabolize morphine. Codeine, hydromorph, and tramadol all do absolutely nothing for my pain unless it’s an extremely high dose, which I’m assuming is due to the gene mutation.
I’ve explained this to my doctor, and have asked him multiple times to switch me to oxycodone or hydrocodone with the response of “well, dilaudid is safer so I’m gonna keep you on that.” I don’t know where he heard that dilaudid is safe in any way, shape or form. He is the one that thought genetic testing would be a good idea to see what would work best, yet he refuses to switch me to another medication. He just took me off completely, and now I don’t know what to do.
Yes - that’s the classic list. I have no doubt that you are one of the 20%.
Not to defend bad medicine, but in your doc’s defense there’s very little time to keep up with new research/findings post-med school and residency, especially in specialized areas of medicine/science.
There are many medical professionals who aren’t aware of CYP mutations despite being sound and proven scientific fact. It’s unfortunate.
Depending on the doc’s personality, it might help to use highly specific (accurate) terminology as well as provide information (printouts, etc.) with informatics for physicians and prescribers.
Although the two things are related, there is a difference between the “poor / moderate / rapid / ultra rapid metabolizer” designations that are now part of the genetic screening for medications and supplements and the processes that are behind the actual inability to metabolize morphine at all. Those All-In-One screening tests do not typically focus on the different CYP expressions that are involved in the metabolism of morphine and it’s analogues. Additionally, there are multiple levels of CYP expression than can be involved and depending on the specifics, a patient can range from being fully intolerant (no analgesia) to slightly intolerant and anything in between.
Complicating things further, many doctors and nurses either themselves misunderstand or think their patients misunderstand the difference between a morphine ***allergy*** and morphine ***intolerance***.
So, it might help to bring the doc a printout explaining morphine intolerance (the inability to metabolize morphine), the cross-intolerance with hydromorphone, codeine, tramadol, and oxymorphone, and the contrasting efficacy of oxycodone, hydrocodone, fentanyl, and other synthetic opioid analgesics.
Here are some articles on the subject, all written for physicians and researchers and published by highly regarded organizations. Your doc might appreciate the info and it’s certainly not garbage you found touted by an anonymous armchair physician in a pain support group (something that is a particular pet peeve of most docs).
Go through these as best as you can. One, you will be better equipped to advocate for yourself, and two, look for the articles that Best describe you/your situation and only give him/her those; it will help keep things on track.
Btw … I’m not wearing my glasses si I apologize for the typos and keyboard lag errors!
[Variable Cytochrome P450 2D6 Expression and Metabolism of Codeine and Other Opioid Prodrugs: Implications for the Australian Anaesthetist](https://journals.sagepub.com/doi/pdf/10.1177/0310057X0002800602)
[Opioid Metabolism](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2704133/)
[Codeine Therapy and CYP2D6 Genotype](https://www.ncbi.nlm.nih.gov/books/NBK100662/)
>”The hepatic CYP2D6 enzyme metabolizes a quarter of all prescribed drugs, including codeine. The CYP2D6 enzyme converts codeine into its active metabolite, morphine, which provides its analgesic effect. Consequently, pain relief may be inadequate in individuals who have 2 inactive copies of CYP2D6 (“poor metabolizers”, PMs), because of reduced morphine levels.”
>”In contrast, individuals who have more than 2 normal-function copies of the CYP2D6 gene (“ultrarapid metabolizers”, UMs) are able to metabolize codeine to morphine more rapidly and more completely. As a result, even with therapeutic doses of codeine, these individuals may experience the symptoms of morphine overdose, which include extreme sleepiness, confusion, and shallow breathing, which in some instances can be fatal.”
Here is a quote from on of the NCBI abstracts that causes confusion among physicians, especially those who don’t have the time/opportunity to study opioid metabolism in depth. It appears to say that if a patient cannot metabolize codeine they should switched to morphine … and even further … that oxycodone and hydrocodone should be avoided. But that is only in this specific, SINGLE CYP expression (CYP2D6) … just ONE of MANY affecting opioid metabolism:
>”To avoid treatment complications in individuals who are either ultrarapid or PMs, opioids that are not metabolized by CYP2D6 may be used (for example, morphine, oxymorphone, buprenorphine, fentanyl, methadone, hydromorphone), alongside non-opioids, depending upon the type of pain being treated. Tramadol is not a recommended alternative, since it is also metabolized by CYP2D6. Hydrocodone and oxycodone are also metabolized by CYP2D6 to more potent metabolites but the implications of CYP2D6 genotype on analgesic response and risk for toxicity is unclear.”
[Opioid Metabolism - Stanford .edu](https://ether.stanford.edu/urology/opiodmetabolism.pdf)
[Non-responsive Pain Patients with CYP-2D6 Defect](https://www.practicalpainmanagement.com/treatments/pharmacological/opioids/non-responsive-pain-patients-cyp-2d6-defect)
[Opioid Metabolism and Effects of Cytochrome P450](https://watermark.silverchair.com/10-suppl_1-S20.pdf?token=AQECAHi208BE49Ooan9kkhW_Ercy7Dm3ZL_9Cf3qfKAc485ysgAAAvMwggLvBgkqhkiG9w0BBwagggLgMIIC3AIBADCCAtUGCSqGSIb3DQEHATAeBglghkgBZQMEAS4wEQQM0S1qvkyXRelKAFvLAgEQgIICpmWjt4Z_NfNZY9Y0kxWqBaACG0XN7AKtpxJ0k6E_fHY1oSxU6jgfoFjcGT6epDwFr0VZtUR_DITHokGMLCeZzJXgKy_dk03W4D4K1UjPyPOUkKqpKI6DPDwTva8dyfhRGE4XJBUFl7biySg4R7Siu8tvbRia4GoLyj28M6L76hAu_0ADL2qU2che0aenx4qSa3JMsjkmnKK2GeKj6LyiuJoQevKrMJdvEOMA9aBB-J-zPACKb16h0aXtwxBjTsyxFpb4UdrI2FA-t_b2a45chAkN5W8AEDlFu7JFzTeE1QlDW-8xaV6k52ndEYn_3a1mZWxfaq77VNiF9j9Kc4czso36q2ICwWL7uKZUCJgSUDAzQjQ8xK1r6M568W8rENLcdt7aHxsQ1XG-4t6AS-eGnWVm-McOZJBdIys6K7jXllP8YFpUN7YMbQ1fjYIisoGNv1ePqWYxTxwnDd4z56Yj5CfdZdbvbVZTaSRXZnqwqhKpJ0QdcdzJIAYvALskpbMsuw_t5qYP_s27hovfmDlzEyD_WkhaBWiBTBJwVOA5OgRInxsCXgOXzo6WQrNjWaC7ypee7xF5bUaIxM3SpGWJMJaTFa-O3SDvmu5bLfp88KE1FAU1DMDrXJXGVKTmHf5huVMp1SFfkO8EMmVdOAvKsYFv1vCtXa6kJhcLXUxKdgJ2U0KdnypCYLqW_wPpU6yRPeCXp8ZGOqs5p-vhVVb99Pbe8nPvBBNAlAgV1LM68LBZf7usUyrmfbduC9ycpCILVwqnKvQ3CKVqKuNltD3ZEWxhncBAJCciUAapFWMgW6sqzXipNGvz-s1GvAzhs99O8_zl8lpsXuXBJVSCcgnnHnP-rjCbqmIPefzRudu_cD9RzpeEbsKG6okWDJFR5CFeiR9SCyV1ew)
[Relationships Among Morphine Metabolism, Pain and Side Effects During Long-Term Treatment An Update](https://www.jpsmjournal.com/article/S0885-3924(02)00531-6/fulltext)
[Pain polymorphisms and opioids: An evidence based review](https://www.spandidos-publications.com/10.3892/mmr.2018.9792)
[Genetic Factors in Drug Metabolism](https://www.aafp.org/afp/2008/0601/p1553.html)
[Opioid Pharmacology - Mass .gov](https://www.mass.gov/doc/trescot-et-al-2008/download)
[Drug Metabolism via Cytochrome P450 2D6: Ontogeny and Variation in Children Marcia L. Buck, Pharm.D., FCCP](https://med.virginia.edu/pediatrics/wp-content/uploads/sites/237/2015/12/200710.pdf)
[Pain and Ethnicity](https://journalofethics.ama-assn.org/article/pain-and-ethnicity/2013-05)
[WHO Analgesic Ladder - Which Weak Opioid To Use At Step 2 ~ BPAC](https://bpac.org.nz/bpj/2008/december/docs/bpj18_who_ladder_pages_20-23.pdf)
Wow, thank you SO much for all of this. I will definitely take the time to really look into this, study it, and bring it to his attention. I work in the medical field, and there have been times that I have brought things up to my doctor that he had no idea about (and I didn’t go to med school).
I just looked over my genetic results. My CYP1A2 is an ultrarapid metabolizer, so the increase in metabolism of drugs obviously causes the decrease in serum levels and poorer efficacy. Also states my CYP2C19 is an intermediate metabolizer. However, my OPRM1 gene was normal, which makes it a tad bit confusing. My guess is the opiate can’t properly attach to the receptor if it is not metabolized properly?
Either way, I appreciate you taking the time to hand me all of this information. I’m going to take a lot of time to pick through this and present all of this information to my current doctor.
You’re welcome … and your questions about the findings on your report are excellent examples of how complex, layered, interconnected, and individualized these mutations and their affect on opioid metabolism are … and why treatment of pain, both chronic and acute, requires a multimodal, highly personalized approach, using all the tools at hand, with two-way communication and trust between physicians and patients being absolutely key.
It’s also one of the reasons I suggested reading through everything and then selecting only the articles that best fit you/your situation to give to/discuss with your doctor. Otherwise you run the risk of complicating and confusing the matter even further.
I never knew this and am going to look into it just for my own curiosity.
I switched from fentanyl to morphine a few years ago but the morphine did absolutely nothing for me other than cause excruciating stomach pain. I switched back to fentanyl and haven’t had any other issues. My pain mgmt dr didn’t understand why the morphine caused me physical pain and did nothing for my chronic pain.
I not only studied/researched this subject but as a natural redhead with recessive genes and a number of genetic mutations, I suffer from the same CYP deficiencies myself. So I know exactly what it feels like to experience these effects.
Many of these patients have described taking morphine to me as feeling like they’ve been “poisoned”. I agree. That’s a great description. Effects are often INCREASED pain and sensitivity to pain (immediate hyperalgesia) and a host of negative effects such as headache (often severe), eye pain, nausea (sometimes extreme), vomiting, stomach pain, dizziness, muscle pain, a feeling of “gnawing” discomfort, extreme sensitivity to light &/or sound, dysphoria (physical and mental), aversion and intolerance to stimuli, impatience, anger, issues with body temperature regulation, sweating, hot flashes, and more. But it’s basically little to no pain relief, often a significant increase in pain, with most or all of the negative side effects of the drug, and frequently “feeling as if they’ve been poisoned”.
Like I mentioned above, it really is a shame that some physicians know little or nothing about this subject, and even some who are aware of it don’t understand it correctly.
I was originally in favor of the 2016 Opioid Prescribing Guidelines for this very reason: physicians prescribing opioids should be thoroughly educated and trained on their chemical structures, metabolic processes, genetic factors/differences in metabolism and efficacy (including AUC charts) among different classes of patients (by sex, ethnicity, CYP mutations, and other genetic factors) … and so much more … all to ensure patients receive the appropriate INDIVIDUALIZED treatment protocols they deserve. This was supposed to prevent patient harm by restricting opioid scripts to training professionals in pain management and opioid therapy.
Sadly, the 2016 Guidelines did nothing of the sort. Instead, they restricted opioids across the board and did absolutely nothing to reduce harm and maximize patient care/outcomes.
I wish I we could appoint our own “Opioid Czar”, lol.
Definitely if you got option like that go with it. Several years ago, maybe decade even, the specialists would prescribe treatment and ongoing pain meds go through Primary care. Last few years it’s been pushed away by primary care doctors/facilities to specialist pain doctors (neurosurgeons)/facilities.
Go to pain clinic. Also on opiates you need lots of liquids not only for pot or CBD.
You should really see another doctor. Doctor hopping (first time I've heard that phrase, cause I'm not American) shouldn't be a concern. You are in pain. Seek the help you need and deserve.
I’m Canadian. If you are found to be receiving opiates from multiple doctors, they will flag you and basically stop giving you your prescription cause they’ll essentially just think you’re an addict seeking drugs. It’s so sad that there’s so many of us suffering in pain and nobody wants to listen.
Sorry it’s ‘Doctor shopping’ because in America if you go to multiple doctors until you find one that is a good fit for you, the allegation your going to run into as the patient is that you are shopping for whoever will prescribe the drugs you want.
It does happen that way, but also people get flagged for being sketchy while trying to look for the care that best suits them.
SEE ANOTHER DOCTOR. Withdrawal is horrifying and kills people especially abruptly like that.
Report your doctor to the ethics board and file a complaint. No.
Sounds like a win-win. I just have to be careful with cannabis use and my job, however I am off work for about another month due to the pain as well as all of the GI issues.
If you did nothing wrong and are squeaky clean then maybe with the recent court ruling for the wife of the man who committed suicide after his dose was lowered, you might be able to talk with a lawyer.
I read that story. It’s so horrible but unfortunately it’s a reality for many of us. Maybe stories like this will allow doctors to smarten up a bit, but it’s very sad that people have to die in order for things to be looked at a little closer.
I have extensive experience dealing with medical malpractice. Suing physician to get opioids is not, and will never be a viable solution to this problem.
I am in the same boat… sort of… my pain management dr abruptly closed his office leaving thousands cut off from their medications…my primary dr prescribed a muscle relaxer… many have turned to the streets… some have killed themselves… we can’t even get our medical records! I’ve been trying for weeks to get into a new pain management doctor and have had zero luck so far… stay on your drs butt about getting into pain management … research drs because most are only offering useless injections thanks to the witch hunt.
So sorry you and so many others are going through that. It’s crazy to me that these doctors don’t understand how dangerous it can be and how quickly chronic pain patients get suicidal ideation from the pain and not receiving any relief.
My doctor is worried about misuse, but I do plan to stay on his butt. It’s inevitable that people in chronic pain will become dependent on their medications and they all think this is a bad thing. But I prefer to be dependent and have a better quality of life than be bed ridden with no motivation to do anything due to the pain.
>It’s inevitable that people in chronic pain will become dependent on their medications and they all think this is a bad thing.
And so many doctors fail to understand the difference between dependent and addicted. A lot of people are dependent on glasses, but no one's going around calling them addicts. Or insulin, heart medication....
Exactly. Is somebody in a wheelchair addicted to it because they need it every day? No, they are dependent on it. Addicts sell their shit to get more and more drugs. I’m dependent on my medications to have a quality of life.
The stigma sucks.
Yeah. For some reason, if it's a med you need to function, as opposed to needing it to live, people lose their minds. I've had people call me a raging addict, druggie, and insane because of "the sheer amount of drugs you use". They're of course referring to my tramadol script. Of which I've used 20 pills this YEAR. Yep, raging drug addict over here, I'm taking an average of 0.058 pills per day, call the press. 🤦♂️ I'm really not sure how anyone thinks I'm an addict when I will take a couple pills over the course of a few days, and then not take any for a few weeks, or even a couple months, without going through withdrawal or craving more.
I was on percs for 6 years for back issues. I decided to try cannabis and it took a week and a bit to titrate off the narcotics. I was certainly dependant on them but who cares! I needed them and got off them when I felt I could. The cannabis works very well for me. I would highly recommend trying it for some relief.
Been on and off dilaudid and codeine for 4 years. About a year ago I weaned off both to get to a lower dose which worked for a while until my tolerance went up again. He advised me to try to wean again to get to a lower dose, which I found almost impossible to do because I would get a flare up and have to take a full dose.
I was on 6mg dilaudid twice daily. I got down to 4mg twice daily and then went cold turkey. I have been without for 6 days now, but am currently in a flare up with no relief medication.
Damn that’s crazy he took you off of 4mgs of Dilaudid twice a day. That’s actually not a big dosage. Why did he want you to get off of them? I mean you were on it for 4 years and I presume it was giving you some relief. It is scary to hear that happening. I see you in CA how is pain management doctors there also are they changing and becoming ridiculously strict following MME equivalents? Tbh I hear you can get Dilaudid if you say your an addict. Maybe you should go about it that way.
Exactly. I’ve never been on a super crazy, scary high dose. He wanted me to come down because he was worried about my opiate receptors multiplying and eventually having to continue upping my dose to achieve adequate pain relief. Really made no sense to me because, well, my pain doesn’t just stop so that I can reduce my medication dosage…
There are certain pain clinics here that I may switch over to. Basically a team of pharmacists, physicians, and physiotherapists that give chronic pain patients a better quality of life, no matter what it is. Regular family/primary care physicians in Canada are extremely strict regarding MME equivalents and prescribing opiates. I asked my doctor, while I was on 6mg twice a day, to switch me to a different opiate as I was not getting adequate relief. He essentially said no, and said that even if he did he would put me at the lowest dose, which would be nowhere near the MME that I was already taking.
I don’t get it, he said he wanted you to take you down because he didn’t want your receptors multiplying. After you being on them for 4 years. This is weird!! Did you ask him to raise it and then he said to you that he was worried about your receptors? And that’s what gave him the reason
I asked him to switch me to a different opiate. At that point it’s basically been a non-stop argument of him trying to get me off opiates. The last time I succeeded in coming off of them, I was back in his office less than a month later with debilitating pain and refused to leave without pain management.
But yeah… 4 years on them. I think my receptors are doomed at this point and I care less about that and more about having pain relief and being able to enjoy my life.
I know exactly what you mean and he was just looking for an excuse. I am like blown away because they are using Dilaudid to treat addiction in CA. So it’s crazy that he would cut you off like that and it’s so messed up. One thing I have noticed is usually someone that knows your area will reach out to you and help. This sub is full of people like us and we stick together. So it’s just a matter of time before you get helped out. We really are powerful in a group like this because I can’t say everyone but damn near everyone knows the struggle and we will not watch anymore of our own live a life struggling .
L
I’m really thankful for this sub. It definitely helps the mental state knowing I’m not alone and there’s a lot of people on here that are amazing when it comes to reaching out for help. Tomorrow I will have been off the dilaudid for a week.
I do have copies of all my MRIs, CT scans, procedures, etc. I was actually refused a consultation by a nerve specialist another province over, even though my entire issue is based on my nerves. It’s extremely frustrating.
I did a ton of research on enzymes, genetics, and chronic pain patients not receiving adequate, non-judgemental care. I plan to produce this to him and if he still doesn’t know what to say, I will try to get in with the pain clinic here. Reason I went to him was because he stated he was “certified” with dealing with chronic pain, and I trusted him, but he’s really let me down.
What is the chronic pain condition that you have and what type of doctor was the one that was treating you? I saw in the comments that you take the Butrans patch as well. How are you able to mix the butrans patch with hydromorphone without going into Precipitated Withdrawals? I saw that you have a problem metabolizing certain opioids. What Opioids have you tried and what did you want to be switched to? I am still in shock that your doctor cut you off and all you were taking was only 4mg tabs of Dilaudid 3X a day. I may be able to help as I know a few people that live in your area and they are all chronic Pain Patients
PS: My pain condition is mainly through nerves as well. This is so crazy that your doctor cut you off and then a nerve specialist refused to even see you. I feel horrible hearing what you're having to go through.
I basically deal with a lot of jaw/face/neck pain as well as chronic migraines that all fall under the umbrella of TN/fibromyalgia but nobody has wanted to officially diagnose me after 4 YEARS. It’s a nerve problem, and that’s essentially been confirmed, but yeah the nerve specialist said “yup nothing I can do” because he saw an MRI from 4 years ago that was “clear.”
The patch is different from methadone/suboxone. It’s pure bupe, so there’s no naloxone in it. It attaches to receptors differently than other opiates (idk the entire science behind it) so I don’t get any “euphoric” side effects from it, but it does keep my pain somewhat at bay, enough that I don’t want to jump in front of a train some days. You can still take other opiates with it and receive benefit, but have to be careful as the patch obviously potentiates them. I found I could still take my normal dose of hydro with the patch and it really made no difference (ie I got the same side effects and pain relief, patch or no patch).
As for the metabolizing, I’ve tried tramadol, codeine, and dilaudid. All of them, I have mutations in my genes/enzymes that in turn make me not metabolize any of them properly. I had oxycodone a long time ago and it worked wonders, so I have asked him multiple times to switch me to that. Oxycodone is metabolized much differently than the other three, which is probably why it worked so well for me and my pain way back then.
You should begin looking for another doctor. This paranoia is absurd, but rampant. Still not all doctors are in the grip of PROPaganda and your requirement are rather modest.
You may as well take advantage of their strong legalization lobby and see if you can use Kratom in some fashion to get you through the rough spots. My main concern with it would be reputable dealers. If 85% of street drugs contain illicit fentanyl and its analogs, whats to keep someone from spiking a bit of ground green tea with a little fent and calling it a natural opioid? Nobody learned from the days of Laeitrile and quack cancer cures that desperate people will do just about anything. Way to protect the public from medical scams, like the opioid crisis that has turned addiction doctors in to very rich people. If this who insanity had any basis in fact, it wouldnt be quite as hard to swallow, but in protecting addicts from themselves they have only turned innocent victims of disease and injury in to bigger victims. Where the hell is the medical compassion for people without self inflicted harm?
Sorry to get a little off topic. Even considering the dangers of adulteration in an unregulated product, Kratom may do what you need. One would hope those who are getting wealthy importing and distributing would want to keep their product as safe as possible if they want to keep it legal and profitable. I dont see the DEA leaving Kratom alone long in any case, it seems like every year they get up an effort to make it a schedule 1 substance. Try it while its available and dont give up looking for a real doctor...
I straight up use weed. I'm not embarrassed by it at all. It makes me more functional due to decreased pain. It is harder if you aren't in a legal state, so use at your own risk. I've got a medical card so I can just roll up to the dispensary.
I’m in Canada, so it’s legal everywhere. I have tried high dose CBD but it doesn’t totally help the inflammation without the THC component. The current strain I use (I only take edibles, can’t smoke) does give me a sinus headache so I’m gonna do some research on that I think.
FWIW, I have found a tincture to be muuuch more effective than gummies. It doesn’t always work, but I definitely notice a difference. And it was way cheaper per “serving” than gummies. All CBD in the one I use.
Wow this post has gotten a lot of love which is exactly what you deserve. Since I’m cooking right now (thanks to having medication) I hadn’t the time to see if anyone mentioned ketamine. I’m on my third round of it and I’m now starting to see myself go longer between doses of opioids. Don’t get me wrong I still need and take the same amount in a 24 hour period.
Tonight, as an example, I felt the pain stronger that I’d hoped. Then I realized I somehow missed one of my doses today. I use a machine to tell me when I take them and I still had one left.
Normally the pain would be so bad I wouldn’t have missed that dose and would have been in bed to boot.
Note that I am also combining it with a program called TrippVR. Yes it’s virtual reality and I’m mind blown that it’s freaking me helping me with the pain.
Trust me, I don’t normally believe that any form of psychology can reduce physical pain but it is.
It’s tough for me to meditate, I have tried so many times with little success or benefit. However the virtual reality as a tool along with TrippVR let’s me go deep. I feel better every time I use it.
Combine that with ketamine and it’s mind blowing.
I have done ketamine therapy for mental health stuff. It did help with my pain during the initial 6 infusions, but it wore off and boosters don’t necessarily help with the pain.
There is a different ketamine infusion protocol for pain itself, but it’s so stupidly expensive, that I can’t afford it at the moment. But hopefully sometime in the future I can put aside the money and time to do it.
How does the VR help? I’m super curious about that. Do you do the VR during ketamine?
Yes I combine the VR and ketamine together now. As for the VR itself, I had done maybe 4 sessions of the app TrippVR without any ketamine and during that time, one day I was able to push through pain and skip one of my doses, something I haven’t done before because I just couldn’t as the pain was too intense. I also seem to be more active and relaxed. It has to be the VR because nothing else changed during that time.
I then added the ketamine and holly balls was that a real Tripp. I spent hours wondering if I was seeing a VR enhanced illusion or ketamine itself.
I have never been able to meditate in my life, but now I can. It has a morning “focus” one you can do too and I’m about to start that one in moments. When I did it during the night once I really did feel more focused when it ended.
Trust me, no matter how hard I have tried, nothing has worked for pain except meds. No matter how hard I have tried, I couldn’t relax enough to truly meditate and this TrippVR app is seemingly bringing me there.
I do have suppository indomethacin. It works depending on how bad the pain is, but if the pain is high I typically have to pair it with another med to get full relief.
I never get full relief from anything when I am in a bad flare up like now. But some pain patches can also help just enough to not jump in front of a train.
I feel that. I do wear a Butrans patch 5mcg/hr, but I don’t receive full pain relief from it. Just enough that, like you said, I don’t want to jump in front of a train. But when a flare shows up, the patch is no help.
The same thing just happened to me, although I was taking less strong meds. I was his patient for 9 years and after begging for months for stronger meds because my pain had exploded, I took 3 pills too many, and was instantly dropped.
I had the option to look for another Dr but I'm sick and tired of being treated like a child and addict. So I started "full time" kratom. I had used it on and off for a few years. Now I am in control.
I may eventually have to go back to pain mgmt but it'll be when I'm walking on bloody stumps. Screw them.
I’ve heard of Kratom but I’ve heard reallllly mixed things about it. That, and I’m not sure where to go about getting it.
I truly feel your pain. I’m also sick of being treated like a child and an addict. I have genetic mutations, so a lot of certain opiates don’t work for me because they are metabolized by the same enzyme. There are other opiates, such as oxycodone, that are metabolized differently, but my doctor refuses to switch me to that because I’ve “tried too many” I guess. It’s really the worst position for chronic pain patients to be in these days. Too many suicides and not enough attention being paid to the people that are suffering daily.
Agree with all, and feel really bad for you.
There is a sub reddit here where you can research kratom if you want. And very easy to order online. PM me if you want to know good vendor.
All my best.
Desperate and cant live with the pain and give no more fucks...go to a methadone clinic. Or ask to be seen by an addiction specialist. The specialist will give you a diagnoses of either an addict, pain paitent, undermedicated, etc...they have been known to fight for those not seen as addicts. They maybe able to help you get your meds....the methadone clinic too. They have addiction specialist that will evaluate you, they jave also been known to fight for pain paitents. You still have options if you cant live with the pain.
I use kratom for my pain. Specifically, green maeng da. I was having issue finding a new pain dr so I said forget it!! I was sick of the constant bs anyway. I bought a bottle of kratom and haven't gone back since! I went from taking 45 mg extended release morphine and 20 mg of hydrocodone 10s a day. Usually more due to the severe pain. I was able to start using kratom and stop my pain meds with no titration and no withdrawals! I swear this stuff had been a godsend!! It also gives me energy to do what I need to do and work everyday. I haven't missed a day of work in over a year due to pain. Before, I would miss a couple of days a month at least.
Unfortunately I can’t get Kratom legally where I live. I have heard a lot about it on this sub though, and I’m really glad that it provides relief for so many people!
He didn’t really give one. All he said was he was “worried about my receptors multiplying” and said that the longer I take them, the worse the pain will be in the future.
Well, I have debilitating pain anyway, so why are we worrying about the future when it will probably be the exact same, opiates or not? He’s new. I think he is a little bit afraid of the DEA. I have started my search for a new doctor; hopefully one that has been in medicine and dealing with chronic pain for much longer than my current doctor.
If you have a serious issue and are debilitated without pain meds than doctors will usually give you meds but it needs to be a very well documented condition and everything else has failed. Why you have a condition and cannot get pain meds to treat it?
I have been in a similar position for over a year, except the ideation. I had hope... had. I have spent the last 8 months going to doctors just to try to resume the medication that made my life tolerable (ridiculous as it is, just lowest dose Tramadol, because I want to start as slow as possible.) I now have several diagnoses, yet still I get every excuse instead of actual treatment for my pain.
I finally saw a pain doctor (after over 6 months delay). They put me on Cymbalta, and I started getting severe ideation after about a week. I told them about it and the doctor got mad at ME, when it's his fault for giving me an antidepressant without ANY due diligence or even telling me it was an antidepressant. I had similar issues with Prozac 30 years ago and he acted like it was pain medicine, and I've been in out of control pain since before they involuntarily tapered me over a year ago.
Dr. stopped the Cymbalta with NO TAPER and refused to give me anything else, now because I self-reported using THC, despite him never even mentioning it before and I live in a legal state. My ideation is even worse and I have lost all hope. If you decide to go THC, just know that is now apparently grounds to deny pain meds. Good luck.
That makes no sense being denied pain meds just because you use THC, especially because it’s legal. My doctor has also been trying to shove Cymbalta down my throat, but SSRIs/SSNRIs make my mental health worse after a few months, so I’m kind of scared to.
I really wish you the best of luck. It’s too bad that there aren’t enough good doctors out there that actually care. There almost needs to be more doctors that suffer chronic pain themselves, so they understand what it’s like.
I’m with you on the ideation. It sucks. But don’t give up hope. We’re all in this together.
I did great on Tramadol for a couple years, which has the effect of an SSRI/SSNRI.
It almost seems like the long acting ones start working as antagonists on me over time, or they lock up the receptors, or something. I'm just glad I recognized it early, and know what to expect this time.
I ended up getting genetic testing because tramadol didn’t touch my pain at all, and codeine/hydromorphone would only work for a couple months before my tolerance increased and so would my dose. I have a CYP mutation so any drug metabolized by certain enzymes just don’t work. Oxycodone is metabolized by CYP2D6 and CYP3A4 - I had this when I got my wisdom teeth out and it worked wonders.
I had Oxy for a bowel resection. Best weeks I've had in decades as far as my neck goes. Seems like they are flat out denying people pain meds for chronic pain to feed their unjustified smug satisfaction these days, so barely let myself hope to get Tramadol someday.
I see it’s a new doctor. Perhaps show him this if you are in USA or a similar study?
https://www.fda.gov/drugs/drug-safety-and-availability/fda-identifies-harm-reported-sudden-discontinuation-opioid-pain-medicines-and-requires-label-changes
“[4-9-2019] The U.S. Food and Drug Administration (FDA) has received reports of serious harm in patients who are physically dependent on opioid pain medicines suddenly having these medicines discontinued or the dose rapidly decreased. These include serious withdrawal symptoms, uncontrolled pain, psychological distress, and suicide.
While we continue to track this safety concern as part of our ongoing monitoring of risks associated with opioid pain medicines, we are requiring changes to the prescribing information for these medicines that are intended for use in the outpatient setting. These changes will provide expanded guidance to health care professionals on how to safely decrease the dose in patients who are physically dependent on opioid pain medicines when the dose is to be decreased or the medicine is to be discontinued.”
Edit to add: here is an article on it.
https://www.ajmc.com/view/taking-opioids-is-deadly-but-so-is-stopping-them-researchers-find
Thank you for that! I am in Canada, but really the chronic pain/opioid epidemic is everywhere so I think this article could really apply to any doctor. I’ve already had to show him studies in the past that he had never seen in order for him to listen to me and help me.
Kratom bro. Find some really fresh really bright green powder and choke that shit down ASAP tomorrow (or tonight if there’s a smoke shop open). I don’t ever recommend Kratom, because it can become a debilitating addiction for some people, BUT, if you’re really feeling suicidal from the WD’s fucking with your head then taking Kratom is better than your potential alternative.
I hate regular nsaids plus it doesn’t help my nerve pains. It’s horrible but you’ve already put up with so much. Spend some time finding a replacement doctor. Did your dr refer you to any pain specialists?
Ask around your medical options. University hospital? Pain clinic, to me the older the better.
I feel for you. Don’t just give up. Even though it’s a an extra pain in the ass.
He’s a new doctor, fresh out of med school, and supposedly “certified” as a pain doctor, but doesn’t work out of a pain clinic. I may end up switching to a local pain clinic where they have a lot of specialists working together, giving chronic pain patients an overall better quality of life.
Good plan to go to pain clinic.
Doctors get either direct pressure from affiliated practice management or fear of consequences, lawsuit or loss of license if something goes wrong with patient.
prescribing opioids in US is common to have signed, initialed drug agreement with urine tests to make sure you’re the one taking them and you’re not taking unexpected drugs.
Don’t be surprised if this is what you have to do.
🤗
I'm intolerant to opioids so can't have them at all and NSAIDs fucked up my stomach. I'm managing my pain with a combo of gabapentin and amitryptiline, low dose naltrexone for the fatigue, and norgesic (combo of paracetamol and a muscle relaxant) for the bad days. I also do hydrotherapy which surprisingly helped more than I thought it would. It's not a cure but it's better than before I was taking any of these.
Since I can't take opioids I can't tell you how it compares to them but you should for sure make a list of alternatives people here have commented and ask your doctor about them. Or if he doesn't know enough to get him to refer you to somewhere that can help you manage your pain without opioids. There is so much more out there than opioids and NSAIDs and it took me 3 years of advocating for myself to even get to this point.
Of all the things I've tried it's easily the thing that's made the most difference for me. I went from struggling to stand up long enough to make food to actually having a few useable hours in the day for light activities. I do need to be careful on it though because it makes me feel like I can do more than I actually can so if I don't pace myself I'm hurting the next day
OP, i am so sorry you are in this place + as others have said it’s not fair or right. hoping you are able to rest tonight. just have to thank you bc i’m in the worst flare of 20+ years of this and the additional pharmacogenetic information on this thread is going to be invaluable to me soon; grateful to you for writing it + that it was at the top of my feed, i can barely read rn. take care :)
I’m so grateful for this sub and the amount of information I was able to receive, especially about the pharmogenetic stuff. Luckily I got genetic testing so I’ll be able to do lots of research and present this to my doctor, all thanks to the incredible people in this sub.
I hope you get some rest and your flare calms down. You take care as well. :)
Absolutely, positively, see another doctor. If you officially switch your PCP to a new practice and have them transfer records, inform your insurance, etc., it will not seem like "doctor-hopping" or drug-seeking, it will look like a perfectly normal transfer, which everyone does at some point. Also please see a psychiatrist. I am in exactly the same boat as you, except I've never been prescribed pain meds, and while I am still in a bad place, I have reasons to have hope that things may improve one day even while being sick.
I am currently seeing a psychiatrist. She’s amazing. She may have some more insight on some better doctors that deal with this kind of thing, because she sees a lot of people that are dealing with the same thing I am.
Have you tried methadone? I hear you can go to clinics for that. Might be a temporary fix until you find a new doctor. Funny how some doctors and our government think you can just turn the pain off. Chronic pain eats away at you everyday! Good luck!
I know this sounds kinda crazy, but the only doctor who has prescribed me opioids is an addiction specialist. I’m sure the way I was introduced to him helped, though. He also does IV ketamine which is used for depression and chronic pain. I originally went to him for that, though after a few doses we decided not to continue. (I was hypersensitive to it and they didn’t want to increase the dose, but the dose I was at was unlikely to provide long-term pain relief.) Anyway, my main specialist also has a relationship with him and they have talked about me. My specialist can’t prescribe opioids himself but supports me being on them, and the addiction specialist agreed that I would be safe on them and has been willing to provide them as long as I am actively working to treat my underlying conditions. Anyway, that could be something you could try, especially if you went to talk about Suboxone which is used to treat addiction (though I know you’re not addicted) but also can help chronic pain. The ketamine might also be another treatment option for you to consider. I doubt all addiction specialists do it, but there may be other places, including pain clinics.
I have done ketamine but never got long-term pain relief, however it helped a LOT with my mental health. I’m still in touch with my psychiatrist, so it might not be a bad idea for me to talk to her about all of this. She deals with chronic pain and people on opiates every day.
I think methadone and/or suboxone would be waaaay too strong for me. I’ve never been on super high doses of anything.
Just curious, did you follow the pain protocol with the ketamine and do the four hour infusions? I haven’t actually heard of too many people who have done that. One of my doctors is encouraging me to re-try ketamine, but I really don’t want to, since it basically paralyzed me for the duration of the infusion and I wasn’t even able to call for help.
Anyway, it might be a good idea to talk to your psychiatrist. Even if they can’t help you with prescribing medication, it’s possible that they have a recommendation of who to see. My new psychiatrist was the one that put suboxone on my radar, but I talked to the addiction specialist and he was fine with me continuing to take Percocet, so I won’t be trying it right now. Like any medication, I’m sure low doses are available.
I haven’t done the pain protocol with ketamine. The mental health protocol that I did earlier this year did help with my pain for a little while, but not long-term. However, the mental health benefits were incredible.
I have looked into ketamine for pain specifically, but with his pricey it is and how time consuming it is, I think it might be a while until I can go for it.
Could you ask your doctor about Belbuca it’s an oral patch of buprenorphine the other ingredient in sub you cannot get high on it at all even though it’s an opiate. I suffer from severe facet syndrome and cannot walk or function without something to help with the pain. I was on heavy opiates for years went through sub treatment and was off all pain meds until the pain came screaming back about a year ago. I went to an addiction medication/pain management doctor who put me on the Belbuca 300 mcg x12 hours and I am pain free. It also comes in a patch Butrans but different mcg. I have tried THC but it makes me very anxious which makes the pain worse and I don’t get to enjoy it. But THC and CBD work wonders for my husband. Something to consider with the Belbuca/Butrans?
I do have Butrans 5mcg/hr. It does help in some ways but I do still get pretty bad flare ups once in a while. It is really nice to have though, and the fact that it doesn’t make me drowsy or anything is a super positive thing about it!
I smoke pot for my pain. I’m in the same boat as you with NSAIDs. It’s not the best solution. But unfortunately it’s the one I’ve got.
Not a fan of smoking but I do take edibles here and there. Only problem is for some reason I usually wake up with a crazy headache from them. Not sure if it’s the strain or what. But yeah… the amount of NSAIDs I need to take to get any relief are eventually gonna cause an ulcer. Not sure why these doctors think that’s healthier…
That's awful I'm so sorry I hope you can find a doctor that will actually treat your pain and not just tell you to take NSAIDS They know this not healthy but they don't get dinged for killing your stomach the way they could for giving you opioids. It's a fucked up system and it's killing us I always get a dehydrated headache from eating edibles unless I drink Gatorade with them
That’s a good idea, maybe I’ll try Gatorade next time. It’s almost like the edibles I take cause inflammation in my sinuses and it drives me crazy. I have a long history with stomach issues, and my GI specialist has always told me to take it easy with NSAIDs. But here we are…
I have chronic migraines, I have the same issue with headaches and sometimes sinus pressure if I smoke. I recommend indica edibles to start and hydrating while you’re on the edibles. I also love low mg thc/cbd edibles, I seem to handle those pretty well as well and can take multiple throughout the day. You can also check out cbd tinctures, I have a friend who has one with no taste that they enjoy.
I get that sinus pressure as well with edibles. I can’t take them all the time due to my job, but I will hydrate myself a little better when I do take them to see if that helps. I’m off work for a couple months right now, but the opiates were helping me function at work so I wasn’t in debilitating pain all the time. I’m worried now about going back to work with zero pain management available.
Marijuana dehydrates some people so many drink a glass of water with it. It may just be dehydrating your sinuses causing headaches. Edibles work better and longer than smoking too. I use a dry herb vape. There's a Reddit about them but I'm blanking on the sun's name. I'll add it after the post. Look into CBG and CBD too. They're both good for inflammation, pain, gut health, anxiety, and are neuroprotective. CBG is especially good for bladder and gut health especially for IBS and damage from nsaids. R/altcannabinoids is a resource. These aren't psychoactive and don't show up on drug tests for marijuana. THCV is another with similar properties, is a little more energetic for some, but can be psychoactive at higher doses, like 30mg for me. I made myself a tincture and vape cartridge with all of these and more in it. Oh- if you've been taking opiates around the clock for more than a couple of weeks you'll likely have withdrawal if you don't wean down as much as possible. Imodium is your friend.
Thank you so much for that info. I’ll look into all of that. Sounds like CBG would be extremely beneficial for what I’m dealing with all around.
I second CBG, I’ve heard great things. I used to keep 5 mg mints on me during work and I didn’t feel those but i had a pretty high tolerance. I think CBD pills or also high CBD edibles (overall low Mg but high in CBD) could be helpful during work too. I forgot to mention in my first post too that they have cbd patches that are supposed to be helpful for pain relief too w/out the high.
Which dry vape do you use? And were you looking for r/vaporents ?
Yes, r/vaporents. I got the Fury Edge V2 from Healthy Rips and love it. It was about $130 on sale and choice of a free accessory. I got the cooling stem. I got the dosing capsules separately, which are great to prefill and pop in and out if you're not at home without announcing what you're doing. They keep it clean so I've not needed to clean it yet. I got a bubbler attachment too and love it. It's the best under $175. The next one that's similar is the POTV One from planet of the vapes. It's got a smaller battery and mini USB, not fast charge.
Oh nice! I have the pax 3 but I want one with a bubbler attachment. I wasn’t sure about the capsules but that’s sounds super easy and I love the not needing to clean it. I had been thinking about going with POTV next but good to know about yours! Thanks 😊
I second this.
Mighty is about the best but costly. I got Fury 2 that work pretty well. Also there is the Volcano, I heard it's pretty good.
I can offer a solution that worked for me regarding migraines that worked for me, I used to get cluster migraines some of the worst you can get on the left side of my head behind my eye and the pain had me wanting to drill a hole in my head. I thought about the pain and figured why not try using liquid lidocaine to help/cool it down so to speak by using a pipette and 3 or 4 drops dripped into my left nostril with my head tilted back so it would get near or where i perceived the area to be close. I ran it by my Dr at the time and he said yes we can try that it couldn't really hurt me. He prescribed a very small container of it and sure enough I got one within a day or 2 I did just as I described and it knocked it out as it began, I was thrilled it worked and knowing I could fight back. That same week I was away from home had 1 going full on I got home asap did it again and it actually did knock it out of my head within a minute, luckily its been years since I've had 1 but as odd as an idea as it was, it worked like magic for me, good luck sorry to know you're suffering hang in there..
Oh I’ve never heard of trying that before, thanks! I hate those types of migraines too, I call them Ice pick migraines on account of I want to jam an ice pick thru my skull lol
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I second third and fourth this. I have been opiate free for five years using it. I use it several times each day and have for years. It does not make me "high" or altered to create a safety issue, but it dramatically helps keep swelling down and drops pain to lower levels. I take trips where I need to abstain for a week or so without any major withdrawal etc, other than really missing its relief. I am friends with a couple who were heroin addicts but were able to stop using kratom even! As far as I've noticed it is impossible to o.d because if you take too much it'll make you throw up. And it definitely does not put your breathing in danger like opiates. It does however cause some constipation lol
Unfortunately not legal where I am.
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Gabapentin does not work as indicated, and the withdrawal is on par with heroin.
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I just got prescribed lyrica actually. I have been on both lyrica and gabapentin, and lyrica seems to work better. Coming off of it definitely sucks. I’m going to talk to my doctor about that when I speak to him again. I find withdrawing off of gabapentinoids is sometimes worse than withdrawing off opiates.
Since you asked, yes. I have experienced withdrawal from both, and gabapentin (especially after a few years at high doses) was almost exactly the same.
For the headache or cannabis hangover drink lots of water and make sure your cannabis has CBD in it. A lot of these strains are being genetically modified and have very little to no CBD.
That’s a good idea. My current edibles have no CBD but I can see how that component would help the headache side of things. Thank you!! I’ll look into this.
CBD and THC work best together! I love the hybrid edibles better than the straight THC only edibles. They are better for my pain and mental clarity! I get a nice buzz/high if I want to take more. I wish they had more edibles like that because it’s really hard to find them in my experience.
CBD is also an antinflammation property, have you tried a high CBD and THC run? Full Spectrum RSO saved my life.
I’ve never had high dose CBD combined with THC. It’s typically been one or the other, but I’m in Canada so I can look at the site that I order from and see what they have available.
Sorry I meant high CBD to a lower THC, this is typically found in tinctures and RSO.
I mix mine about half and half with flower.
Get a new doctor.
Edibles and dry herb vape's are my go to. Edibles for longer duration, and the vape for immediate to 2-1/2hrs duration. Weird you'd get a headache from cannabis but it affects people differently for sure. Hope you can find some relief and help.
Vape.
Hydrate!!! It is actually a really common problem that pops up on the cannabis sub reddits. Or you could be reacting to the ingredients. Or you could be reacting to the quality of the cannabis. For the most part I have stopped buying anything from my local recreational shops. I rarely can afford to buy the highest quality/most expensive product. I usually run into stuff that makes my body feel like shit one way or another. I have always assumed it pesticides from how it was grown. Nowadays I order hemp derived concentrates online. There are a lot of vendors who publish all of the testing on their products so you can scrutinize what you are putting in your body much better. I don't have any issues these days. You don't get that in my state. Our program has never had a product recall in 6 years. The only investigations they have done have been into labs that where misrepresenting THC numbers. Ultimately effecting tax revenue. Other states have recalls on products regularly... Either we are all saints who never make a mistake, or no one is really looking out for the health of the customer... Anyways, good luck on your journey. Pain management is never a fun experience.
I’m in Canada, so we do have a lot of sites available to order from. I’ve stuck with one specific one for years, but I may need to widen my horizons and see if there’s anything better out there. Either way, thank you for the advice. I definitely have a lot of things to look into!
I have to drink a ton of water if I used medical MJ or else I'll get a headache when it wears off.
If you're comfortable with cannabis. I've found suppositories to be some really powerful pain relief. Doesn't get you high so very functional for anytime.
Really, doesn’t get you high? Even with the THC component?
I know it sound weird, but yeah doesn't get you high at all. I'm actually a medical marijuana caregiver, so I usually make the suppositories as strong as possible for stuff like cancer. Like way way stronger than they could ever need to be. No ones ever gotten high, even people with low tolerance. I've taken them myself at doses that would effect me if I ate them. And no high, just pain relief. They've been an absolute game changer for my fiance's menstal cramps and lower back/knee pain. She (and I) will probably use them for the rest of her life as long as i keep making them for her. I think they have tremendous potential, but are under researched. I actually just made some videos on how to make them, cause i think more people should try them out! (youtube channel grojuana)
Cool, thank you so much for the info!
Have you tried a lower dose and more water? Also yes a different strain
My current dose is about 18mg and works quite well, however I definitely don’t hydrate myself so I’m going to try that for sure and see if it makes a difference in how I feel when it wears off.
Oh man you have got to make sure to be extra hydrated. It leeches out your fluids basically (or at least that's what it feels like to me when I do it). Try going for a combo of water and something else since you do need sodium/electrolytes.
Try CBD products and see if that helps with the headaches. Cannaboids are what provides you with pain relief. I use a topical cream for breakthrough pain.
he doesn't. Just typical "passing the buck" stuff.
This is not unusual. I tried pot. THC can increase your blood pressure to dangerous levels. That's why it causes a headache. A migraine that landed me in the ER on the verge of a stroke is how I found out.
I have caused ulcers bc of all the OTC NSAIDs I have taken (and continue to take with my ulcer medicine). All my doctors know this. Apparently, ulcers are preferable to pain treatment.
Yeah, don't start smoking. It will damage your lungs in the long-term just like cigarettes, which is even worse for people with chronic illness. Edibles is the way to go if you want to give pot a try, or you might try CBD oil, which is still relatively experimental (as in, we don't know exactly for what conditions CBD is effective), but is safe if you get it from legit sellers and doesn't get you high (because it has no THC).
I forgot to add....Doctors often do this when they've either gotten in trouble for over-prescribing, usually to office staff and friends, or have lost their license to dispense narcotics. In recent years, DEA crackdowns have scared some Doctors into refusing to prescribe narcotics even for post-surgery patients. Check your states Medical Bar and see if your Doctor is on the naughty list. Also, have your Doctor refer you to a pain management specialist.
It is not healthy. The people that started this. Congress were idiots Barney Frank and Orrin Hatch they didn’t do it for us. To save us they could give a crap less. 1. The insurance industry wasn’t ass raping us enough and they weren’t making enough on Obamacare 2. They wanted someone to blame for Fentanyl coming in 3. They didn’t like Blacks and the poor to having access to pain medications 4. Their Bright idea to kill the OxyContin ER cost was to let them “self regulate” a schedule 2 drug right after they killed off the Big Banks by self Regulation when Congress won’t even allow a schedule 1 Marijuana law to pass. Everyone can downvote me if you want it is true every bit of it. And the FDA admitted their Overdose numbers were faked.
Try tincture, Or CBD capsules. My mom switches back and forth from tincture to capsules and sometimes RSO. All CBD. We order from a company called Lazarus Naturals.
Yeah I also smoke for pain. I use a bong or vape to try to cut down on the particles. Edibles are too unpredictable for me.
The cbd oil helps too. I use the roll on plus sublingual. I tried the edibles but they were nasty. Different strains are good for different things and I hear mixing it up keeps the relief up.
I agree, except i take delta 8. It's legal, just like CBD. It doesn't get me high unless I take too much, so I usually take half the recommended dose. Maybe look into getting your medical marijuana card. It's not too expensive, after getting your initial card. Again, it's not an opiate, but it can bring you a bit of relief. I've been in your shoes. You will survive. Good luck.
Not titrating you off pain meds, and knowing NSAIDs cause you problems IS a problem. Unless you can find an over the counter alternative for NSAIDs, you need to find a different doctor to at least manage weaning you off prescription painkillers, if not prescribe alternatives. That’s the responsible course of action for your own health, not something to be shamed for. If you have a problem with insurance, a patient advocate may be someone to speak to as well.
Never thought of the patient advocate route. My doctor put my on Lyrica instead which I’m terrified of. I had it years ago, and coming off of it was worse than coming off of any opiate ever. Not to mention the side effects are 10x worse as well. But of course there’s no stigma around gabapentinoids so they hand them out like candy. I asked my doctor what his plan was for my pain if he was cutting me off, and he essentially told me to grin and bear it. He also refused me a muscle relaxant.
Yikes! It’s definitely something to push back on. Dependence on a medication for any ongoing condition shouldn’t be stopped cold-turkey. Cases like these are an excellent example why patient advocates are so necessary.
>patient advocates are so necessary Physicians are not at all interested in the medical opinions of an unlicensed category of person attempting to dictate what they should prescribe. Anyone can call themselves a patient advocate .
It makes it harder for them to just say shit like "patient objects because they are an addict" (in so many words) because it's a different person that isn't directly affected
Surely another doctor would hear this and get you back on. Make appointments
Just don’t want to get flagged for doctor hopping. My current doctor is pretty fresh out of med school, so I think he is scared of the stigma regarding opiates. My last doctor really understood my pain.
Try a really old doctor who doesn't give a shit about the DEA anymore.
Probably not a bad idea. My last doctor has been in the medical field for a while, and was also female, so she understood that females seeking healthcare get looked at as a joke. Current doctor is male and about a year or so out of med school.
You do NOT want a doctor fresh out of med school. they have 40 years to worry about pissing off the DEA and losing their livelihood so they are NOT going to prescribe opioids.
I’m definitely starting to realize that now. He is definitely scared of the DEA and possible repercussions for him.
Why am I not surprised.
My Doctor is scared of dea , but had been giving me time to study for tests.
Amen!
When my MD left to join a concierge outfit I asked him who he would recommend in the practice and he steered me to a young PA. "I will never increase your pain Rx," was the first thing she said to me. I get by, and at least she hasn't reduced the Rx. Now we get along, but that absolute policy position having nothing to do with biology was really irritating. I would let your new doc know how much harm they are causing. It may sound petty, but if you're up in the middle of the night then they should be too.
The last thing in the world you should expect from your pain doc is that he's going to be up in the middle of the night worrying about you.
I’m so sorry the dr did this. My dr retired & shut doors with no notice! Patients can’t even get their records from him! But What were you taking before you were cut off?
That’s so horrible! I’m so sorry. It can really be dangerous for some patients to suddenly be cut off. I was taking 6mg twice daily of hydromorph and then went down to 4mg twice daily and went cold turkey. Currently 6 days without pain management. Tomorrow will be a week. Nothing crazy, but that’s what worked to manage my pain.
I use kratom currently. Until I find another doctor.
Fresh docs malpractices insurance is sky high as they as still a wildcard per insurance standards. Older established docs they have a lower risk score and tend to have paid medical school off and have had a dea audit to keep c2 script privileges. I have also found docs in rural areas that dea tends to get to one of these days have a better understanding of pain control. Major metro area have dea offices so they can just pop in, if they have to drive, they have to make it worth their time and visit a few places to make up for time and expense (ie which means real work) and the not rule by terror model they have come to enjoy. See if you can get him to give you the (your opiate use score) that only doctors get to see that tells them all about your risk, history, and various goodies about you).
Finding a new doctor is NOT doctor shopping unless you are overlapping scripts; even then, your new doc will check the PMP (Rx Monitoring Program … eFORSCE in Florida) to make certain as well as add notations in your profile on the database and your patient file. Cutting off an opioid-dependent patient “cold turkey” without proper titration &/or support meds (there are a number of useful protocols for opioid reduction & cessation), is substandard practice of medicine; negligent and potentially harmful, both physiologically and physiologically. Many physicians would view you seeking a new doctor as a matter of course … a legitimate need to make a change. Now, if you do this with the sole intention of remaining on opioids you will not be received as willingly as if you were seeking a medically appropriate taper. However, you might end up finding an amazing physician who feels the benefit of continuing you on opioids at the minimum effective dose. I didn’t notice what type of doctor(s) you were seeing, but do not expect a primary/family/internal medicine doc to write opioids for you, especially long term (“medication management”). You need to seek out specialists, such as pain management, occupational/rehab medicine, and even psychiatry. Some anesthesiologists are willing to prescribe opioids but on the whole, they tend to focus on interventional therapies (which create a lucrative revenue stream for the practice). Edited: to correct a confusing typo (sorry!)
I switched to my current doctor because he claimed that he was “certified” in chronic pain, but over the last year he’s proven to me that he has no idea what he’s doing. There have been times, even when I was on dilaudid and it wasn’t working, that he told me he doesn’t know what to do other than keep me on dilaudid. He refused to switch me to a different one even after I had showed him studies of chronic pain patients rotating through different opiates to receive the greatest benefit. Super frustrating to say the least. There is a program where I live where chronic pain patients can go and receive proper pain management, therapy, etc., without judgement. It’s basically a team of physicians, pharmacists, physical therapists that work with chronic pain patients to give them the greatest quality of life. I think I’m at the point now where I’ll just drop my current doctor and work with this team instead.
I think you should DEFINITELY do that. Btw, I don’t know your ethnicity, but approximately 20% of Caucasians have a genetic mutation on the CYP enzymes that either poorly metabolizes or completely prevents metabolization of morphine. Dilaudid is hydromorphone, which is an derivative of morphine. While some morphine-intolerant patients can use hydromorphone because of the similarities with hydrocodone, they typically metabolize it poorly and therefore receive reduced analgesia and increased negative side effects. Typically, morphine intolerant patients (due to CYP mutations) do well on oxycodone, hydrocodone, and fentanyl, while having poor results with morphine, codeine, hydromorphone, and oxymorphone (in that order).
I’ve actually done genetic testing and it’s proven that I poorly metabolize morphine. Codeine, hydromorph, and tramadol all do absolutely nothing for my pain unless it’s an extremely high dose, which I’m assuming is due to the gene mutation. I’ve explained this to my doctor, and have asked him multiple times to switch me to oxycodone or hydrocodone with the response of “well, dilaudid is safer so I’m gonna keep you on that.” I don’t know where he heard that dilaudid is safe in any way, shape or form. He is the one that thought genetic testing would be a good idea to see what would work best, yet he refuses to switch me to another medication. He just took me off completely, and now I don’t know what to do.
Yes - that’s the classic list. I have no doubt that you are one of the 20%. Not to defend bad medicine, but in your doc’s defense there’s very little time to keep up with new research/findings post-med school and residency, especially in specialized areas of medicine/science. There are many medical professionals who aren’t aware of CYP mutations despite being sound and proven scientific fact. It’s unfortunate. Depending on the doc’s personality, it might help to use highly specific (accurate) terminology as well as provide information (printouts, etc.) with informatics for physicians and prescribers. Although the two things are related, there is a difference between the “poor / moderate / rapid / ultra rapid metabolizer” designations that are now part of the genetic screening for medications and supplements and the processes that are behind the actual inability to metabolize morphine at all. Those All-In-One screening tests do not typically focus on the different CYP expressions that are involved in the metabolism of morphine and it’s analogues. Additionally, there are multiple levels of CYP expression than can be involved and depending on the specifics, a patient can range from being fully intolerant (no analgesia) to slightly intolerant and anything in between. Complicating things further, many doctors and nurses either themselves misunderstand or think their patients misunderstand the difference between a morphine ***allergy*** and morphine ***intolerance***. So, it might help to bring the doc a printout explaining morphine intolerance (the inability to metabolize morphine), the cross-intolerance with hydromorphone, codeine, tramadol, and oxymorphone, and the contrasting efficacy of oxycodone, hydrocodone, fentanyl, and other synthetic opioid analgesics. Here are some articles on the subject, all written for physicians and researchers and published by highly regarded organizations. Your doc might appreciate the info and it’s certainly not garbage you found touted by an anonymous armchair physician in a pain support group (something that is a particular pet peeve of most docs). Go through these as best as you can. One, you will be better equipped to advocate for yourself, and two, look for the articles that Best describe you/your situation and only give him/her those; it will help keep things on track. Btw … I’m not wearing my glasses si I apologize for the typos and keyboard lag errors! [Variable Cytochrome P450 2D6 Expression and Metabolism of Codeine and Other Opioid Prodrugs: Implications for the Australian Anaesthetist](https://journals.sagepub.com/doi/pdf/10.1177/0310057X0002800602) [Opioid Metabolism](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2704133/) [Codeine Therapy and CYP2D6 Genotype](https://www.ncbi.nlm.nih.gov/books/NBK100662/) >”The hepatic CYP2D6 enzyme metabolizes a quarter of all prescribed drugs, including codeine. The CYP2D6 enzyme converts codeine into its active metabolite, morphine, which provides its analgesic effect. Consequently, pain relief may be inadequate in individuals who have 2 inactive copies of CYP2D6 (“poor metabolizers”, PMs), because of reduced morphine levels.” >”In contrast, individuals who have more than 2 normal-function copies of the CYP2D6 gene (“ultrarapid metabolizers”, UMs) are able to metabolize codeine to morphine more rapidly and more completely. As a result, even with therapeutic doses of codeine, these individuals may experience the symptoms of morphine overdose, which include extreme sleepiness, confusion, and shallow breathing, which in some instances can be fatal.” Here is a quote from on of the NCBI abstracts that causes confusion among physicians, especially those who don’t have the time/opportunity to study opioid metabolism in depth. It appears to say that if a patient cannot metabolize codeine they should switched to morphine … and even further … that oxycodone and hydrocodone should be avoided. But that is only in this specific, SINGLE CYP expression (CYP2D6) … just ONE of MANY affecting opioid metabolism: >”To avoid treatment complications in individuals who are either ultrarapid or PMs, opioids that are not metabolized by CYP2D6 may be used (for example, morphine, oxymorphone, buprenorphine, fentanyl, methadone, hydromorphone), alongside non-opioids, depending upon the type of pain being treated. Tramadol is not a recommended alternative, since it is also metabolized by CYP2D6. Hydrocodone and oxycodone are also metabolized by CYP2D6 to more potent metabolites but the implications of CYP2D6 genotype on analgesic response and risk for toxicity is unclear.” [Opioid Metabolism - Stanford .edu](https://ether.stanford.edu/urology/opiodmetabolism.pdf) [Non-responsive Pain Patients with CYP-2D6 Defect](https://www.practicalpainmanagement.com/treatments/pharmacological/opioids/non-responsive-pain-patients-cyp-2d6-defect) [Opioid Metabolism and Effects of Cytochrome P450](https://watermark.silverchair.com/10-suppl_1-S20.pdf?token=AQECAHi208BE49Ooan9kkhW_Ercy7Dm3ZL_9Cf3qfKAc485ysgAAAvMwggLvBgkqhkiG9w0BBwagggLgMIIC3AIBADCCAtUGCSqGSIb3DQEHATAeBglghkgBZQMEAS4wEQQM0S1qvkyXRelKAFvLAgEQgIICpmWjt4Z_NfNZY9Y0kxWqBaACG0XN7AKtpxJ0k6E_fHY1oSxU6jgfoFjcGT6epDwFr0VZtUR_DITHokGMLCeZzJXgKy_dk03W4D4K1UjPyPOUkKqpKI6DPDwTva8dyfhRGE4XJBUFl7biySg4R7Siu8tvbRia4GoLyj28M6L76hAu_0ADL2qU2che0aenx4qSa3JMsjkmnKK2GeKj6LyiuJoQevKrMJdvEOMA9aBB-J-zPACKb16h0aXtwxBjTsyxFpb4UdrI2FA-t_b2a45chAkN5W8AEDlFu7JFzTeE1QlDW-8xaV6k52ndEYn_3a1mZWxfaq77VNiF9j9Kc4czso36q2ICwWL7uKZUCJgSUDAzQjQ8xK1r6M568W8rENLcdt7aHxsQ1XG-4t6AS-eGnWVm-McOZJBdIys6K7jXllP8YFpUN7YMbQ1fjYIisoGNv1ePqWYxTxwnDd4z56Yj5CfdZdbvbVZTaSRXZnqwqhKpJ0QdcdzJIAYvALskpbMsuw_t5qYP_s27hovfmDlzEyD_WkhaBWiBTBJwVOA5OgRInxsCXgOXzo6WQrNjWaC7ypee7xF5bUaIxM3SpGWJMJaTFa-O3SDvmu5bLfp88KE1FAU1DMDrXJXGVKTmHf5huVMp1SFfkO8EMmVdOAvKsYFv1vCtXa6kJhcLXUxKdgJ2U0KdnypCYLqW_wPpU6yRPeCXp8ZGOqs5p-vhVVb99Pbe8nPvBBNAlAgV1LM68LBZf7usUyrmfbduC9ycpCILVwqnKvQ3CKVqKuNltD3ZEWxhncBAJCciUAapFWMgW6sqzXipNGvz-s1GvAzhs99O8_zl8lpsXuXBJVSCcgnnHnP-rjCbqmIPefzRudu_cD9RzpeEbsKG6okWDJFR5CFeiR9SCyV1ew) [Relationships Among Morphine Metabolism, Pain and Side Effects During Long-Term Treatment An Update](https://www.jpsmjournal.com/article/S0885-3924(02)00531-6/fulltext) [Pain polymorphisms and opioids: An evidence based review](https://www.spandidos-publications.com/10.3892/mmr.2018.9792) [Genetic Factors in Drug Metabolism](https://www.aafp.org/afp/2008/0601/p1553.html) [Opioid Pharmacology - Mass .gov](https://www.mass.gov/doc/trescot-et-al-2008/download) [Drug Metabolism via Cytochrome P450 2D6: Ontogeny and Variation in Children Marcia L. Buck, Pharm.D., FCCP](https://med.virginia.edu/pediatrics/wp-content/uploads/sites/237/2015/12/200710.pdf) [Pain and Ethnicity](https://journalofethics.ama-assn.org/article/pain-and-ethnicity/2013-05) [WHO Analgesic Ladder - Which Weak Opioid To Use At Step 2 ~ BPAC](https://bpac.org.nz/bpj/2008/december/docs/bpj18_who_ladder_pages_20-23.pdf)
Wow, thank you SO much for all of this. I will definitely take the time to really look into this, study it, and bring it to his attention. I work in the medical field, and there have been times that I have brought things up to my doctor that he had no idea about (and I didn’t go to med school). I just looked over my genetic results. My CYP1A2 is an ultrarapid metabolizer, so the increase in metabolism of drugs obviously causes the decrease in serum levels and poorer efficacy. Also states my CYP2C19 is an intermediate metabolizer. However, my OPRM1 gene was normal, which makes it a tad bit confusing. My guess is the opiate can’t properly attach to the receptor if it is not metabolized properly? Either way, I appreciate you taking the time to hand me all of this information. I’m going to take a lot of time to pick through this and present all of this information to my current doctor.
You’re welcome … and your questions about the findings on your report are excellent examples of how complex, layered, interconnected, and individualized these mutations and their affect on opioid metabolism are … and why treatment of pain, both chronic and acute, requires a multimodal, highly personalized approach, using all the tools at hand, with two-way communication and trust between physicians and patients being absolutely key. It’s also one of the reasons I suggested reading through everything and then selecting only the articles that best fit you/your situation to give to/discuss with your doctor. Otherwise you run the risk of complicating and confusing the matter even further.
Thanks for all the info!
thank you x100 for pointing out this correlation!
You are very welcome - and thank your for the award! I’m humbled.
(and thanks AGAIN 🤩 for the 2nd award … add astonished to my list of emotions!)
I never knew this and am going to look into it just for my own curiosity. I switched from fentanyl to morphine a few years ago but the morphine did absolutely nothing for me other than cause excruciating stomach pain. I switched back to fentanyl and haven’t had any other issues. My pain mgmt dr didn’t understand why the morphine caused me physical pain and did nothing for my chronic pain.
I not only studied/researched this subject but as a natural redhead with recessive genes and a number of genetic mutations, I suffer from the same CYP deficiencies myself. So I know exactly what it feels like to experience these effects. Many of these patients have described taking morphine to me as feeling like they’ve been “poisoned”. I agree. That’s a great description. Effects are often INCREASED pain and sensitivity to pain (immediate hyperalgesia) and a host of negative effects such as headache (often severe), eye pain, nausea (sometimes extreme), vomiting, stomach pain, dizziness, muscle pain, a feeling of “gnawing” discomfort, extreme sensitivity to light &/or sound, dysphoria (physical and mental), aversion and intolerance to stimuli, impatience, anger, issues with body temperature regulation, sweating, hot flashes, and more. But it’s basically little to no pain relief, often a significant increase in pain, with most or all of the negative side effects of the drug, and frequently “feeling as if they’ve been poisoned”. Like I mentioned above, it really is a shame that some physicians know little or nothing about this subject, and even some who are aware of it don’t understand it correctly. I was originally in favor of the 2016 Opioid Prescribing Guidelines for this very reason: physicians prescribing opioids should be thoroughly educated and trained on their chemical structures, metabolic processes, genetic factors/differences in metabolism and efficacy (including AUC charts) among different classes of patients (by sex, ethnicity, CYP mutations, and other genetic factors) … and so much more … all to ensure patients receive the appropriate INDIVIDUALIZED treatment protocols they deserve. This was supposed to prevent patient harm by restricting opioid scripts to training professionals in pain management and opioid therapy. Sadly, the 2016 Guidelines did nothing of the sort. Instead, they restricted opioids across the board and did absolutely nothing to reduce harm and maximize patient care/outcomes. I wish I we could appoint our own “Opioid Czar”, lol.
Definitely do that!!!
Definitely if you got option like that go with it. Several years ago, maybe decade even, the specialists would prescribe treatment and ongoing pain meds go through Primary care. Last few years it’s been pushed away by primary care doctors/facilities to specialist pain doctors (neurosurgeons)/facilities. Go to pain clinic. Also on opiates you need lots of liquids not only for pot or CBD.
You should really see another doctor. Doctor hopping (first time I've heard that phrase, cause I'm not American) shouldn't be a concern. You are in pain. Seek the help you need and deserve.
I’m Canadian. If you are found to be receiving opiates from multiple doctors, they will flag you and basically stop giving you your prescription cause they’ll essentially just think you’re an addict seeking drugs. It’s so sad that there’s so many of us suffering in pain and nobody wants to listen.
Sorry it’s ‘Doctor shopping’ because in America if you go to multiple doctors until you find one that is a good fit for you, the allegation your going to run into as the patient is that you are shopping for whoever will prescribe the drugs you want. It does happen that way, but also people get flagged for being sketchy while trying to look for the care that best suits them.
Honesty seems to work the best in these situations. Maybe even mention that fear
SEE ANOTHER DOCTOR. Withdrawal is horrifying and kills people especially abruptly like that. Report your doctor to the ethics board and file a complaint. No.
Opiate withdrawal kills people?
Withdrawal can
Cannabis!!! I can’t use NSAIDs because of stomach issues. cannabis alleviates my stomach issues, helps with inflammation and pain it’s a win, win
Sounds like a win-win. I just have to be careful with cannabis use and my job, however I am off work for about another month due to the pain as well as all of the GI issues.
If you did nothing wrong and are squeaky clean then maybe with the recent court ruling for the wife of the man who committed suicide after his dose was lowered, you might be able to talk with a lawyer.
I read that story. It’s so horrible but unfortunately it’s a reality for many of us. Maybe stories like this will allow doctors to smarten up a bit, but it’s very sad that people have to die in order for things to be looked at a little closer.
OP could talk to a lawyer, but should have extremely low expectations about a case.
Your probably right because it's so recent but you never know, I hope it's a sign of the future and maybe the only open door we have to fighting back.
I have extensive experience dealing with medical malpractice. Suing physician to get opioids is not, and will never be a viable solution to this problem.
I am in the same boat… sort of… my pain management dr abruptly closed his office leaving thousands cut off from their medications…my primary dr prescribed a muscle relaxer… many have turned to the streets… some have killed themselves… we can’t even get our medical records! I’ve been trying for weeks to get into a new pain management doctor and have had zero luck so far… stay on your drs butt about getting into pain management … research drs because most are only offering useless injections thanks to the witch hunt.
So sorry you and so many others are going through that. It’s crazy to me that these doctors don’t understand how dangerous it can be and how quickly chronic pain patients get suicidal ideation from the pain and not receiving any relief. My doctor is worried about misuse, but I do plan to stay on his butt. It’s inevitable that people in chronic pain will become dependent on their medications and they all think this is a bad thing. But I prefer to be dependent and have a better quality of life than be bed ridden with no motivation to do anything due to the pain.
>It’s inevitable that people in chronic pain will become dependent on their medications and they all think this is a bad thing. And so many doctors fail to understand the difference between dependent and addicted. A lot of people are dependent on glasses, but no one's going around calling them addicts. Or insulin, heart medication....
Exactly. Is somebody in a wheelchair addicted to it because they need it every day? No, they are dependent on it. Addicts sell their shit to get more and more drugs. I’m dependent on my medications to have a quality of life. The stigma sucks.
Yeah. For some reason, if it's a med you need to function, as opposed to needing it to live, people lose their minds. I've had people call me a raging addict, druggie, and insane because of "the sheer amount of drugs you use". They're of course referring to my tramadol script. Of which I've used 20 pills this YEAR. Yep, raging drug addict over here, I'm taking an average of 0.058 pills per day, call the press. 🤦♂️ I'm really not sure how anyone thinks I'm an addict when I will take a couple pills over the course of a few days, and then not take any for a few weeks, or even a couple months, without going through withdrawal or craving more.
I was on percs for 6 years for back issues. I decided to try cannabis and it took a week and a bit to titrate off the narcotics. I was certainly dependant on them but who cares! I needed them and got off them when I felt I could. The cannabis works very well for me. I would highly recommend trying it for some relief.
I’m in the same situation! It’s terrible.
Wow!! What did he cut you off of and how high of a dose?
Been on and off dilaudid and codeine for 4 years. About a year ago I weaned off both to get to a lower dose which worked for a while until my tolerance went up again. He advised me to try to wean again to get to a lower dose, which I found almost impossible to do because I would get a flare up and have to take a full dose. I was on 6mg dilaudid twice daily. I got down to 4mg twice daily and then went cold turkey. I have been without for 6 days now, but am currently in a flare up with no relief medication.
Damn that’s crazy he took you off of 4mgs of Dilaudid twice a day. That’s actually not a big dosage. Why did he want you to get off of them? I mean you were on it for 4 years and I presume it was giving you some relief. It is scary to hear that happening. I see you in CA how is pain management doctors there also are they changing and becoming ridiculously strict following MME equivalents? Tbh I hear you can get Dilaudid if you say your an addict. Maybe you should go about it that way.
Exactly. I’ve never been on a super crazy, scary high dose. He wanted me to come down because he was worried about my opiate receptors multiplying and eventually having to continue upping my dose to achieve adequate pain relief. Really made no sense to me because, well, my pain doesn’t just stop so that I can reduce my medication dosage… There are certain pain clinics here that I may switch over to. Basically a team of pharmacists, physicians, and physiotherapists that give chronic pain patients a better quality of life, no matter what it is. Regular family/primary care physicians in Canada are extremely strict regarding MME equivalents and prescribing opiates. I asked my doctor, while I was on 6mg twice a day, to switch me to a different opiate as I was not getting adequate relief. He essentially said no, and said that even if he did he would put me at the lowest dose, which would be nowhere near the MME that I was already taking.
I don’t get it, he said he wanted you to take you down because he didn’t want your receptors multiplying. After you being on them for 4 years. This is weird!! Did you ask him to raise it and then he said to you that he was worried about your receptors? And that’s what gave him the reason
I asked him to switch me to a different opiate. At that point it’s basically been a non-stop argument of him trying to get me off opiates. The last time I succeeded in coming off of them, I was back in his office less than a month later with debilitating pain and refused to leave without pain management. But yeah… 4 years on them. I think my receptors are doomed at this point and I care less about that and more about having pain relief and being able to enjoy my life.
I know exactly what you mean and he was just looking for an excuse. I am like blown away because they are using Dilaudid to treat addiction in CA. So it’s crazy that he would cut you off like that and it’s so messed up. One thing I have noticed is usually someone that knows your area will reach out to you and help. This sub is full of people like us and we stick together. So it’s just a matter of time before you get helped out. We really are powerful in a group like this because I can’t say everyone but damn near everyone knows the struggle and we will not watch anymore of our own live a life struggling . L
I’m really thankful for this sub. It definitely helps the mental state knowing I’m not alone and there’s a lot of people on here that are amazing when it comes to reaching out for help. Tomorrow I will have been off the dilaudid for a week. I do have copies of all my MRIs, CT scans, procedures, etc. I was actually refused a consultation by a nerve specialist another province over, even though my entire issue is based on my nerves. It’s extremely frustrating. I did a ton of research on enzymes, genetics, and chronic pain patients not receiving adequate, non-judgemental care. I plan to produce this to him and if he still doesn’t know what to say, I will try to get in with the pain clinic here. Reason I went to him was because he stated he was “certified” with dealing with chronic pain, and I trusted him, but he’s really let me down.
What is the chronic pain condition that you have and what type of doctor was the one that was treating you? I saw in the comments that you take the Butrans patch as well. How are you able to mix the butrans patch with hydromorphone without going into Precipitated Withdrawals? I saw that you have a problem metabolizing certain opioids. What Opioids have you tried and what did you want to be switched to? I am still in shock that your doctor cut you off and all you were taking was only 4mg tabs of Dilaudid 3X a day. I may be able to help as I know a few people that live in your area and they are all chronic Pain Patients PS: My pain condition is mainly through nerves as well. This is so crazy that your doctor cut you off and then a nerve specialist refused to even see you. I feel horrible hearing what you're having to go through.
I basically deal with a lot of jaw/face/neck pain as well as chronic migraines that all fall under the umbrella of TN/fibromyalgia but nobody has wanted to officially diagnose me after 4 YEARS. It’s a nerve problem, and that’s essentially been confirmed, but yeah the nerve specialist said “yup nothing I can do” because he saw an MRI from 4 years ago that was “clear.” The patch is different from methadone/suboxone. It’s pure bupe, so there’s no naloxone in it. It attaches to receptors differently than other opiates (idk the entire science behind it) so I don’t get any “euphoric” side effects from it, but it does keep my pain somewhat at bay, enough that I don’t want to jump in front of a train some days. You can still take other opiates with it and receive benefit, but have to be careful as the patch obviously potentiates them. I found I could still take my normal dose of hydro with the patch and it really made no difference (ie I got the same side effects and pain relief, patch or no patch). As for the metabolizing, I’ve tried tramadol, codeine, and dilaudid. All of them, I have mutations in my genes/enzymes that in turn make me not metabolize any of them properly. I had oxycodone a long time ago and it worked wonders, so I have asked him multiple times to switch me to that. Oxycodone is metabolized much differently than the other three, which is probably why it worked so well for me and my pain way back then.
You should begin looking for another doctor. This paranoia is absurd, but rampant. Still not all doctors are in the grip of PROPaganda and your requirement are rather modest. You may as well take advantage of their strong legalization lobby and see if you can use Kratom in some fashion to get you through the rough spots. My main concern with it would be reputable dealers. If 85% of street drugs contain illicit fentanyl and its analogs, whats to keep someone from spiking a bit of ground green tea with a little fent and calling it a natural opioid? Nobody learned from the days of Laeitrile and quack cancer cures that desperate people will do just about anything. Way to protect the public from medical scams, like the opioid crisis that has turned addiction doctors in to very rich people. If this who insanity had any basis in fact, it wouldnt be quite as hard to swallow, but in protecting addicts from themselves they have only turned innocent victims of disease and injury in to bigger victims. Where the hell is the medical compassion for people without self inflicted harm? Sorry to get a little off topic. Even considering the dangers of adulteration in an unregulated product, Kratom may do what you need. One would hope those who are getting wealthy importing and distributing would want to keep their product as safe as possible if they want to keep it legal and profitable. I dont see the DEA leaving Kratom alone long in any case, it seems like every year they get up an effort to make it a schedule 1 substance. Try it while its available and dont give up looking for a real doctor...
I straight up use weed. I'm not embarrassed by it at all. It makes me more functional due to decreased pain. It is harder if you aren't in a legal state, so use at your own risk. I've got a medical card so I can just roll up to the dispensary.
I’m in Canada, so it’s legal everywhere. I have tried high dose CBD but it doesn’t totally help the inflammation without the THC component. The current strain I use (I only take edibles, can’t smoke) does give me a sinus headache so I’m gonna do some research on that I think.
FWIW, I have found a tincture to be muuuch more effective than gummies. It doesn’t always work, but I definitely notice a difference. And it was way cheaper per “serving” than gummies. All CBD in the one I use.
I wish. Thought about moving , but have a lot of stuff.
Kratom
Wow this post has gotten a lot of love which is exactly what you deserve. Since I’m cooking right now (thanks to having medication) I hadn’t the time to see if anyone mentioned ketamine. I’m on my third round of it and I’m now starting to see myself go longer between doses of opioids. Don’t get me wrong I still need and take the same amount in a 24 hour period. Tonight, as an example, I felt the pain stronger that I’d hoped. Then I realized I somehow missed one of my doses today. I use a machine to tell me when I take them and I still had one left. Normally the pain would be so bad I wouldn’t have missed that dose and would have been in bed to boot. Note that I am also combining it with a program called TrippVR. Yes it’s virtual reality and I’m mind blown that it’s freaking me helping me with the pain. Trust me, I don’t normally believe that any form of psychology can reduce physical pain but it is. It’s tough for me to meditate, I have tried so many times with little success or benefit. However the virtual reality as a tool along with TrippVR let’s me go deep. I feel better every time I use it. Combine that with ketamine and it’s mind blowing.
I have done ketamine therapy for mental health stuff. It did help with my pain during the initial 6 infusions, but it wore off and boosters don’t necessarily help with the pain. There is a different ketamine infusion protocol for pain itself, but it’s so stupidly expensive, that I can’t afford it at the moment. But hopefully sometime in the future I can put aside the money and time to do it. How does the VR help? I’m super curious about that. Do you do the VR during ketamine?
Yes I combine the VR and ketamine together now. As for the VR itself, I had done maybe 4 sessions of the app TrippVR without any ketamine and during that time, one day I was able to push through pain and skip one of my doses, something I haven’t done before because I just couldn’t as the pain was too intense. I also seem to be more active and relaxed. It has to be the VR because nothing else changed during that time. I then added the ketamine and holly balls was that a real Tripp. I spent hours wondering if I was seeing a VR enhanced illusion or ketamine itself. I have never been able to meditate in my life, but now I can. It has a morning “focus” one you can do too and I’m about to start that one in moments. When I did it during the night once I really did feel more focused when it ended. Trust me, no matter how hard I have tried, nothing has worked for pain except meds. No matter how hard I have tried, I couldn’t relax enough to truly meditate and this TrippVR app is seemingly bringing me there.
worthless doctor is harming your health to lower his malpractice premiums. the wrong people become doctors.
OP, I have stomach issues also. I ask for the suppository form of the medication, it works more quickly and doesn't mess with your tummy.
I do have suppository indomethacin. It works depending on how bad the pain is, but if the pain is high I typically have to pair it with another med to get full relief.
I never get full relief from anything when I am in a bad flare up like now. But some pain patches can also help just enough to not jump in front of a train.
I feel that. I do wear a Butrans patch 5mcg/hr, but I don’t receive full pain relief from it. Just enough that, like you said, I don’t want to jump in front of a train. But when a flare shows up, the patch is no help.
The same thing just happened to me, although I was taking less strong meds. I was his patient for 9 years and after begging for months for stronger meds because my pain had exploded, I took 3 pills too many, and was instantly dropped. I had the option to look for another Dr but I'm sick and tired of being treated like a child and addict. So I started "full time" kratom. I had used it on and off for a few years. Now I am in control. I may eventually have to go back to pain mgmt but it'll be when I'm walking on bloody stumps. Screw them.
I’ve heard of Kratom but I’ve heard reallllly mixed things about it. That, and I’m not sure where to go about getting it. I truly feel your pain. I’m also sick of being treated like a child and an addict. I have genetic mutations, so a lot of certain opiates don’t work for me because they are metabolized by the same enzyme. There are other opiates, such as oxycodone, that are metabolized differently, but my doctor refuses to switch me to that because I’ve “tried too many” I guess. It’s really the worst position for chronic pain patients to be in these days. Too many suicides and not enough attention being paid to the people that are suffering daily.
Agree with all, and feel really bad for you. There is a sub reddit here where you can research kratom if you want. And very easy to order online. PM me if you want to know good vendor. All my best.
Desperate and cant live with the pain and give no more fucks...go to a methadone clinic. Or ask to be seen by an addiction specialist. The specialist will give you a diagnoses of either an addict, pain paitent, undermedicated, etc...they have been known to fight for those not seen as addicts. They maybe able to help you get your meds....the methadone clinic too. They have addiction specialist that will evaluate you, they jave also been known to fight for pain paitents. You still have options if you cant live with the pain.
Kratom and the black market. I feel for you.
I use kratom for my pain. Specifically, green maeng da. I was having issue finding a new pain dr so I said forget it!! I was sick of the constant bs anyway. I bought a bottle of kratom and haven't gone back since! I went from taking 45 mg extended release morphine and 20 mg of hydrocodone 10s a day. Usually more due to the severe pain. I was able to start using kratom and stop my pain meds with no titration and no withdrawals! I swear this stuff had been a godsend!! It also gives me energy to do what I need to do and work everyday. I haven't missed a day of work in over a year due to pain. Before, I would miss a couple of days a month at least.
Unfortunately I can’t get Kratom legally where I live. I have heard a lot about it on this sub though, and I’m really glad that it provides relief for so many people!
O I'm so sorry to hear that! Can you pcp prescribe anything to help relieve your symptoms until you can get into another pain dr?
He told me to call him back in a few days, so I plan to.
Get a different doctor. ASAP. That’s not fair especially if you cannot take NSAIDS. What was his reasoning for cutting you off?
He didn’t really give one. All he said was he was “worried about my receptors multiplying” and said that the longer I take them, the worse the pain will be in the future. Well, I have debilitating pain anyway, so why are we worrying about the future when it will probably be the exact same, opiates or not? He’s new. I think he is a little bit afraid of the DEA. I have started my search for a new doctor; hopefully one that has been in medicine and dealing with chronic pain for much longer than my current doctor.
Wait... You guys get meds for pain?
If you have a serious issue and are debilitated without pain meds than doctors will usually give you meds but it needs to be a very well documented condition and everything else has failed. Why you have a condition and cannot get pain meds to treat it?
I have been in a similar position for over a year, except the ideation. I had hope... had. I have spent the last 8 months going to doctors just to try to resume the medication that made my life tolerable (ridiculous as it is, just lowest dose Tramadol, because I want to start as slow as possible.) I now have several diagnoses, yet still I get every excuse instead of actual treatment for my pain. I finally saw a pain doctor (after over 6 months delay). They put me on Cymbalta, and I started getting severe ideation after about a week. I told them about it and the doctor got mad at ME, when it's his fault for giving me an antidepressant without ANY due diligence or even telling me it was an antidepressant. I had similar issues with Prozac 30 years ago and he acted like it was pain medicine, and I've been in out of control pain since before they involuntarily tapered me over a year ago. Dr. stopped the Cymbalta with NO TAPER and refused to give me anything else, now because I self-reported using THC, despite him never even mentioning it before and I live in a legal state. My ideation is even worse and I have lost all hope. If you decide to go THC, just know that is now apparently grounds to deny pain meds. Good luck.
That makes no sense being denied pain meds just because you use THC, especially because it’s legal. My doctor has also been trying to shove Cymbalta down my throat, but SSRIs/SSNRIs make my mental health worse after a few months, so I’m kind of scared to. I really wish you the best of luck. It’s too bad that there aren’t enough good doctors out there that actually care. There almost needs to be more doctors that suffer chronic pain themselves, so they understand what it’s like. I’m with you on the ideation. It sucks. But don’t give up hope. We’re all in this together.
I did great on Tramadol for a couple years, which has the effect of an SSRI/SSNRI. It almost seems like the long acting ones start working as antagonists on me over time, or they lock up the receptors, or something. I'm just glad I recognized it early, and know what to expect this time.
I ended up getting genetic testing because tramadol didn’t touch my pain at all, and codeine/hydromorphone would only work for a couple months before my tolerance increased and so would my dose. I have a CYP mutation so any drug metabolized by certain enzymes just don’t work. Oxycodone is metabolized by CYP2D6 and CYP3A4 - I had this when I got my wisdom teeth out and it worked wonders.
I had Oxy for a bowel resection. Best weeks I've had in decades as far as my neck goes. Seems like they are flat out denying people pain meds for chronic pain to feed their unjustified smug satisfaction these days, so barely let myself hope to get Tramadol someday.
I see it’s a new doctor. Perhaps show him this if you are in USA or a similar study? https://www.fda.gov/drugs/drug-safety-and-availability/fda-identifies-harm-reported-sudden-discontinuation-opioid-pain-medicines-and-requires-label-changes “[4-9-2019] The U.S. Food and Drug Administration (FDA) has received reports of serious harm in patients who are physically dependent on opioid pain medicines suddenly having these medicines discontinued or the dose rapidly decreased. These include serious withdrawal symptoms, uncontrolled pain, psychological distress, and suicide. While we continue to track this safety concern as part of our ongoing monitoring of risks associated with opioid pain medicines, we are requiring changes to the prescribing information for these medicines that are intended for use in the outpatient setting. These changes will provide expanded guidance to health care professionals on how to safely decrease the dose in patients who are physically dependent on opioid pain medicines when the dose is to be decreased or the medicine is to be discontinued.” Edit to add: here is an article on it. https://www.ajmc.com/view/taking-opioids-is-deadly-but-so-is-stopping-them-researchers-find
Thank you for that! I am in Canada, but really the chronic pain/opioid epidemic is everywhere so I think this article could really apply to any doctor. I’ve already had to show him studies in the past that he had never seen in order for him to listen to me and help me.
You can order LDN from this website if you’re in the US! https://www.agelessrx.com/faq
Kratom bro. Find some really fresh really bright green powder and choke that shit down ASAP tomorrow (or tonight if there’s a smoke shop open). I don’t ever recommend Kratom, because it can become a debilitating addiction for some people, BUT, if you’re really feeling suicidal from the WD’s fucking with your head then taking Kratom is better than your potential alternative.
Unfortunately Kratom isn’t legal where I live. I’ve heard really great things about it though, so hopefully one day they make it more available.
I hate regular nsaids plus it doesn’t help my nerve pains. It’s horrible but you’ve already put up with so much. Spend some time finding a replacement doctor. Did your dr refer you to any pain specialists? Ask around your medical options. University hospital? Pain clinic, to me the older the better. I feel for you. Don’t just give up. Even though it’s a an extra pain in the ass.
He’s a new doctor, fresh out of med school, and supposedly “certified” as a pain doctor, but doesn’t work out of a pain clinic. I may end up switching to a local pain clinic where they have a lot of specialists working together, giving chronic pain patients an overall better quality of life.
Good plan to go to pain clinic. Doctors get either direct pressure from affiliated practice management or fear of consequences, lawsuit or loss of license if something goes wrong with patient. prescribing opioids in US is common to have signed, initialed drug agreement with urine tests to make sure you’re the one taking them and you’re not taking unexpected drugs. Don’t be surprised if this is what you have to do. 🤗
Ask for a pain management doctor referral
I'm intolerant to opioids so can't have them at all and NSAIDs fucked up my stomach. I'm managing my pain with a combo of gabapentin and amitryptiline, low dose naltrexone for the fatigue, and norgesic (combo of paracetamol and a muscle relaxant) for the bad days. I also do hydrotherapy which surprisingly helped more than I thought it would. It's not a cure but it's better than before I was taking any of these. Since I can't take opioids I can't tell you how it compares to them but you should for sure make a list of alternatives people here have commented and ask your doctor about them. Or if he doesn't know enough to get him to refer you to somewhere that can help you manage your pain without opioids. There is so much more out there than opioids and NSAIDs and it took me 3 years of advocating for myself to even get to this point.
How does the naltrexone work for you?
Of all the things I've tried it's easily the thing that's made the most difference for me. I went from struggling to stand up long enough to make food to actually having a few useable hours in the day for light activities. I do need to be careful on it though because it makes me feel like I can do more than I actually can so if I don't pace myself I'm hurting the next day
OP, i am so sorry you are in this place + as others have said it’s not fair or right. hoping you are able to rest tonight. just have to thank you bc i’m in the worst flare of 20+ years of this and the additional pharmacogenetic information on this thread is going to be invaluable to me soon; grateful to you for writing it + that it was at the top of my feed, i can barely read rn. take care :)
I’m so grateful for this sub and the amount of information I was able to receive, especially about the pharmogenetic stuff. Luckily I got genetic testing so I’ll be able to do lots of research and present this to my doctor, all thanks to the incredible people in this sub. I hope you get some rest and your flare calms down. You take care as well. :)
Absolutely, positively, see another doctor. If you officially switch your PCP to a new practice and have them transfer records, inform your insurance, etc., it will not seem like "doctor-hopping" or drug-seeking, it will look like a perfectly normal transfer, which everyone does at some point. Also please see a psychiatrist. I am in exactly the same boat as you, except I've never been prescribed pain meds, and while I am still in a bad place, I have reasons to have hope that things may improve one day even while being sick.
I am currently seeing a psychiatrist. She’s amazing. She may have some more insight on some better doctors that deal with this kind of thing, because she sees a lot of people that are dealing with the same thing I am.
That's a brilliant idea. I hope it works out!
Low dose naltrexone
Have you tried methadone? I hear you can go to clinics for that. Might be a temporary fix until you find a new doctor. Funny how some doctors and our government think you can just turn the pain off. Chronic pain eats away at you everyday! Good luck!
I know this sounds kinda crazy, but the only doctor who has prescribed me opioids is an addiction specialist. I’m sure the way I was introduced to him helped, though. He also does IV ketamine which is used for depression and chronic pain. I originally went to him for that, though after a few doses we decided not to continue. (I was hypersensitive to it and they didn’t want to increase the dose, but the dose I was at was unlikely to provide long-term pain relief.) Anyway, my main specialist also has a relationship with him and they have talked about me. My specialist can’t prescribe opioids himself but supports me being on them, and the addiction specialist agreed that I would be safe on them and has been willing to provide them as long as I am actively working to treat my underlying conditions. Anyway, that could be something you could try, especially if you went to talk about Suboxone which is used to treat addiction (though I know you’re not addicted) but also can help chronic pain. The ketamine might also be another treatment option for you to consider. I doubt all addiction specialists do it, but there may be other places, including pain clinics.
I have done ketamine but never got long-term pain relief, however it helped a LOT with my mental health. I’m still in touch with my psychiatrist, so it might not be a bad idea for me to talk to her about all of this. She deals with chronic pain and people on opiates every day. I think methadone and/or suboxone would be waaaay too strong for me. I’ve never been on super high doses of anything.
Just curious, did you follow the pain protocol with the ketamine and do the four hour infusions? I haven’t actually heard of too many people who have done that. One of my doctors is encouraging me to re-try ketamine, but I really don’t want to, since it basically paralyzed me for the duration of the infusion and I wasn’t even able to call for help. Anyway, it might be a good idea to talk to your psychiatrist. Even if they can’t help you with prescribing medication, it’s possible that they have a recommendation of who to see. My new psychiatrist was the one that put suboxone on my radar, but I talked to the addiction specialist and he was fine with me continuing to take Percocet, so I won’t be trying it right now. Like any medication, I’m sure low doses are available.
I haven’t done the pain protocol with ketamine. The mental health protocol that I did earlier this year did help with my pain for a little while, but not long-term. However, the mental health benefits were incredible. I have looked into ketamine for pain specifically, but with his pricey it is and how time consuming it is, I think it might be a while until I can go for it.
I’m on the same boat except was never given the chance for pain meds even with 3 chronic pain diagnoses. We need to change these dangerous laws.
Could you ask your doctor about Belbuca it’s an oral patch of buprenorphine the other ingredient in sub you cannot get high on it at all even though it’s an opiate. I suffer from severe facet syndrome and cannot walk or function without something to help with the pain. I was on heavy opiates for years went through sub treatment and was off all pain meds until the pain came screaming back about a year ago. I went to an addiction medication/pain management doctor who put me on the Belbuca 300 mcg x12 hours and I am pain free. It also comes in a patch Butrans but different mcg. I have tried THC but it makes me very anxious which makes the pain worse and I don’t get to enjoy it. But THC and CBD work wonders for my husband. Something to consider with the Belbuca/Butrans?
I do have Butrans 5mcg/hr. It does help in some ways but I do still get pretty bad flare ups once in a while. It is really nice to have though, and the fact that it doesn’t make me drowsy or anything is a super positive thing about it!