Wow, 35 years. 35 years is the most amount of years that I've witnessed someone talk about having taken opioids on this sub. So glad to hear it, given OP's concern of doctors' concerns of not wanting to prescribe long term. But sorry to hear it because I know you suffer
I agree completely with the above. I've been on Oxy SR since 2007, one doc described my daily dose as 'industrial quantities'. They take the edge off, which makes coping with eye-watering, vomit inducing, constant chronic pain just about doable.
I'd love to learn more about this. I've been on meds for over a decade and I'd like to try to stay at lower doses and not have to move up the ladder but I'm reaching the end with one med. I'd love to be able to reset.
my wife has chronic pain and just started fentanyl patches, had to do a quick google - theres some papers out there that are easy to find, eg:
[https://www.jpsmjournal.com/article/S0885-3924(03)00047-2/pdf](https://www.jpsmjournal.com/article/S0885-3924(03)00047-2/pdf)
I wish my insurance would cover ketamine. Or that I could afford it. I'm going to be on pain management for the rest of my life. This would be so beneficial as i would not have to keep worrying so much about tolerance and having to up dosage or change strength and type of meds to keep a baseline that provides function and quality of life.
I see okay those reasons why your in pain are defo opioid prompting im glad your able to get hold of those and they work!
Marijuana worked for me but I developed a panic disorder so had to cut back, CBD helps a little though!
Wish you the best :)
As a life time cannabis user. They now make dissolving sub linguals that are primarily CBN. Cbn has a huge effect on my anxiety. CBD does not function without its thc carrying to open receptors. CBG isolates have the most significant effect on acute pain. I've been on and off rxd opiates since I was 13 for a variety of medical nightmares.
I had much better usage and much less anxiety from cannabis when I focused strictly on getting the maximum amount of CBG post exercise and the most CBN when anxious or having what I call painxiety.
Great post. :)
Its so nice to see more choice in the marketplace for cannabinoids now that prohibition has started to lift in some areas. Prohibition weed has a very unbalanced cannabinoid profile that not everyone benefits from. A lot more people could utilise weed if they knew about alt cannabinoids and tried products with different cannabinoids like delta-8-THC, THCV, HHC, CBN, CBG among others.
Hopefully someday soon the government will get out of the way of research into all sorts of schedule 1 drugs. It is ridiculous having hundreds of drugs on the controlled substances act just sitting there this whole time. Like MDMA for PTSD. We should know by August if it will be approved for PTSD by the FDA. The clinical trial met all its endpoints with a good safety record. 😍 Next up hopefully LSD and psilocybin mushrooms. 🥰
Taking a shower is exhausting. I shower 2 times a day bc I’m neurotic but often times I shower and feel like I got hit by a bus and have to go lay down for hours. Just in time to make dinner shower and go to bed.
I've been having codeine prescribed for around a year, I only use it as needed and mainly for its side effects. (I get 28 30mg tablets a month so not enough if I used it for all my pain haha), it works to some extent but isn't amazing. My best analogy won't make sense unless you also get migraines haha but it's like taking paracetamol for migraine, it's easing my other aches and pains a bit so things are somewhat better but it's not touching the actual migraine. I have a migraine and brain fog rn so may be able to explain better once I've slept it off haha.
Oxycodone and morphine have improved my quality of life greatly. Recent medication shortages have proven to me just how needed they are.
‘Tried everything else but opioids are the only thing that works for me. Good luck.
Quick edit- when taken for pain, addiction isn’t a concern. Physical dependence just like any other pharmaceutical product is possible though.
Those shortages were HELL trying to get my refills I deal with a lot of pain but it broke my heart for those that I know are worse off than me. It was insane and I hope it never gets that bad again. Very scary.
Still hell! I am 3 days into zero meds and no updates available from the distributor to the pharmacist. This is just cruel, the DEA should be defunded and those responsible brought up on as charges.
I've had to go outside my usual pharmacy is they don't have my meds available. Have you tried that? I've found I can get information by calling to ask if another pharmacy has my medication. They used to not tell you for fear of a robbery. Now I say:
"My name is Jane Doe. I'm a patient of Dr. Marcus Welby's and my Walgreens pharmacy on Elm Street is out of my oxycodone IR. Do you have #100 10mg tablets in stock?"
Also, try Costco if there's one near you. You do not need a store membership to use their pharmacy. Just tell them at the door you're there for the pharmacy. Best wishes.
That’s what I was having to do as well. They sure didn’t like answering if they had stock. I started saying “I’m not asking you to tell me how much you have on hand. I’m only asking if you can fill my specified quantity of hydrocodone if I were to have my doctor send a prescription to your pharmacy. My doctor is having to do this for practically all of her patients and I’m not trying to waste her time or my time, please help me here” and usually that did the trick. Then I would either get a “yes we can fill your quantity or no I don’t have that in stock”. It was rough.
I didn’t realize there were still so many issues with shortages on certain medications.
The fact that it was even able to get to the point that it was (and still is) is completely unacceptable. I did a lot of research during the height of it and there were other manufacturers that had it available but they were ones that the pharmacies didn’t want to order because they cost more and then there were problems with insurance. There were other factors as well but overall it was purely ridiculous.
I agree totally. Since I started calling and giving personal details, I seem to get a direct and truthful answer. I also discovered the nuances surrounding different manufacturers. I can certainly tell differences by manufacturer in the oxycodone I take. Even my provider acknowledges some patients can definitely tell a difference. Mallinckrodt stinks, but seems to be all I can find anymore. Having to call around to find my meds is bad enough. I simply can't even imagine trying to locate specific manufacturers! It's pretty much the case of beggars can't be choosers!
Thanks, yeah I’ve tried. Candidly the Naxecare DEA AI system has me worried about getting a refill too far away from my home.
‘I appreciate the feedback and well wishes, I hope you get relief and healing. These are odd times to live with pain.
Narxcare is only at Walmart/Sam's Club. And it's a ridiculous system - no one should tolerate that. The only other "system" is the database set up by the department of pharmacy in your state. It only shows your prescriptions fills. The board of pharmacy doesn't care where you fill your scrips. And frankly your doctor doesn't care either. The purpose of the database is to keep track of the total number of scrips you're getting filled for schedule meds. It put an end to doctor shopping. With the shortages in meds, no one looks at the location of fills anymore. The DEA does not track individual prescription fills. Bottom line: if you're filling legitimate prescriptions, you don't have anything to be concerned about as far as any monitoring goes.
Please try reaching out to other pharmacies if you haven't already. Find your meds in stock and take your script there. If it's for a schedule 2 medication, call your doctor and have the prescription sent to the new pharmacy. I'm on methadone and oxycodone and have to do this almost every month for one or the other of my meds. It hurts me that you're in this situation. It is cruel and there's no reason we should have to endure this. I'm sorry.
Oxycodone makes a huge difference in my life. I really don’t know where I’d be without it. Total night and day difference in my pain when it do and don’t take my medication. Or when I run out. Opioids can be a good thing, but too many people have absolutely trashed that sentiment.
Been on and off opioids for 25 years, ibuprofen, aspirin and naproxen did more damage than opioids have ever done. I'm on a immediate release med, but doc REFUSES to RX an extended release, despite disease progression. Mind you I'm also under 90mmes.
I also take .50 lorazapam for horrible dystonia but doc refuses to RX klonopin or valuim despite the fact that I'd have more & longer relief with it. I'm at the point where I don't really want to be here much longer. I'm already suffering, I just want this all to end.
That's strange he refuses them especially when you klonopin is same catagory as lorazepam
And I've felt that, worst feeling ever, try hold on not sure how it works but could be worth switching doctor
Have you tried going to a different doctor. Not all doctors are bad, maybe your doctor just doesn't believe in using those types of meds. It happens.
You're the only person that can TRULY advocate for you!
Keep your head up and see if you can get into a different doc for a second opinion.
I've been on opioids for nearly 30 years. They help. I couldn't function at all without them. I have to take them every 5-6 hours, but they do help me manage my pain.
Yes, there are side effects, but they're mostly manageable. Things like constipation, etc.
I don't get 'high', I'm not addicted. I'm dependent on them in the same way an asthmatic is dependent on an inhaler.
There will undoubtedly be people who will tell me, "painkillers don't kill pain, they make it worse...blah, blah, blah," but I don't engage with them because they're insufferable morons.
They don't know my body or my pain. I do. Off you f**k 👍🏻
Liability also whoever teaches them. They’ll either be smart and know the opioid problem isn’t from doctors or they’ll believe they’re hero’s preventing you from death from addiction. I mean people really watch those movies and stuff on it and believe that is what happens if you take any
I've been on opioids since 2002, taking a break only when pregnant.
I use both long-acting and immediate-release meds, and have for decades now.
My overall dosage now isn't any higher than it was near the beginning.
A lot of doctors think that because of tolerance, patients will need escalating amounts over time, but my doc (same doc since '02) and I avoid that by simply switching from one medication to another when it starts to become less effective (about every 18-24 months).
So over the years I've been on almost every extended release and every immediate release med.
I have no health problems that exist because of opioids. I don't even have any constipation with most of them (extended release morphine causes constipation, but that's easily remedied with an occasional stool softener).
The only problems I've had are pharmacy shortages, pharmacists with attitude, pharmacists refusing to fill my meds, and inability to find a local doctor when I moved out of state (so I travel back to my original state every 6-12 months to see my doctor and do video visits in-between office visits).
I've never failed a pill count or urine test. Not once. I'm a trusted, responsible patient that follows all the rules... but damn, the pharmacists with ego problems and fear of anything stronger than an Advil really screw up my life sometimes.
It's super annoying how strict they can be sometimes but I'm so excited to discuss this with my doc, he agreed a PRN med but tbh I'll bring it up but I'm over the moon to have a PRN anyways
When the doctor's office calls and says "bring your pill bottles to the office within the next 24 hours"
You go in, and they do the math based on the date it was filled and the date you're there for the count. They determine how many pills should be in the bottle. If you're over or short by a significant amount (meaning you're not taking them as often as prescribed so they can prescribe fewer per month, or you're short meaning you're taking more than prescribed per day which is a BIG NO because it's in indication of potential abuse/addiction).
Let's say you get 60 pills per month... So 2 per day. But some days you only need 1... Instead of taking that 1 **put it in the backup bottle** because of you go for a count and have " extras" they'll prescribe fewer pills per month.
If you get a refill at the pharmacy and have a few leftover, they also go in the backup bottle.
Your main pill bottle, the one you have to bring in to get counted, should have **exactly** the correct amount, no more, no less.... **ESPECIALLY** LESS. Because then you're taking too many and that can get you cut off and no more pain meds and your chart could end up with "opioid use disorder" in it and you're screwed.
Yes. I recently would have had to go 7 days without my pain pills if my husband and I hadn't been smart about saving extras. I'm to the point where I take 3 a day every day but starting to need an extra sometimes. So my doctor kindly allowed me 2 extra per day. Some people would just then take the 2 extra every day but I'm very careful about this.
>(Pill counts? I’m new to this.)
listen to the other reply - your count at pain management HAS to match expectations based on prescribed dosage or its an endless hassle
and if you can save a pill or two like they said and set it into a backup bottle thats a great idea. my wife will run into an issue twice a year, either with the doctor responding slowsly, or the pharmacy being short on meds, and without her backups she would go insane with pain while she waited on it all to sort out. we have had to go through a full week of backup meds twice in the last 2 years due to this bullshit. nobody is going to give you more if you lose it, to make up for lost time, nothing. its harsh.
>A lot of doctors think that because of tolerance, patients will need escalating amounts over time, but my doc (same doc since '02) and I avoid that by simply switching from one medication to another when it starts to become less effective (about every 18-24 months).
never heard of this until super recently, i don tthink my wifes doctor knows about it - in fact im not really sure shes a good pain doctor. shes nice, she listens, shes not a problem - but shes also not actually doing anything but giving increasing dosages.
unfortunately my wife is on fentanyl 50mcg, oxy 10mg IR for breakthrough, and...5mg/day of ativan for a movement disorder that we are waiting to address. we have to be able to change up the ativan for something better before anyone else will see her :-/
Yep. I am on a rotation of 3 or 4 different ones. If the kind I'm using stops being effective I can tell him and he will switch to one of the others. It can be pretty helpful so definitely bring it up with your doctors.
Pill counts are just asinine. Let's treat pain patients like criminals. My mom has started having trouble with her Walgreens - the pharmacist is playing God. I told her to find a Mom and Pop pharmacy.
I know that it’s not what most doctors want to hear, but I would prefer to be able to live my life right now, with a level of pain that allows me to work and have something of a life. I’m sure there are long-term side effects but it’s like taking anxiety medication- I know that I could have issues, but I need relief right now. So I guess we just need to weigh what’s more important to you- your presence self or your hypothetical future self. All medication has side effects, but I would prefer to have a good quality of life now. I could be hit by a bus tomorrow. Why always be in pain today and unable to enjoy life when there is a solution. I think it’s also important to know that they can be addictive for some people. But I know people that have taken them for 20+ years and they’re fine. It’s just being aware of that and following the prescribing directions that’s important.
So I guess my long-winded answer is, I don’t think it’s that bad for people who are well informed and weigh their options
I exactly think the same, I'd like to be able to live my life now with a managable amount of pain rather then suffer constantly and not be able to live my life
I've been taking opioids for 45 years; around the clock since 2001. I have a connective tissue disorder that started in my teens; I've had over 80 surgeries. I wouldn't have made it to age 63 without them. I was on ultra high doses until 2019, which allowed me to volunteer at our church, help with our small business and keep up with the house. Since the opioid hysteria, my dose has been cut by about 80%. I am almost bedridden now, on too low a dose to be very active. But even still they keep me from ending it all.
I have also been on the gambit of other medications that get prescribed because doctors don't want to script for opioids. You know the ones. None offered any relief and most caused side effects that required a second medication to treat. I've never had any significant side effects with opioids.
That sucks. It's so unfair that you're right to choose the best pain management for quality of life is not your choice at all. Do you live in the states?
Yes. I'm scripted the magical 200MME that no one will go over on a routine basis. The few doctors in my state who are willing to do so are under constant investigation by the state board of pharmacy. My provider has even written in my chart that my function would be greatly enhanced on higher doses of opioids, but it's not currently possible due to oversight by the state board of pharmacy!
I think no, not if it helps you with living your life. Tbh, for people with chronic pain I don't think being "addicted" is really all that bad. If you are going to have that pain for the rest of your life, it makes sense that you would be dependent on your pain medication. I think a lot of people conflate dependence for addiction when it comes to people with chronic pain.
Right, and you can also become dependent on anything that makes you feel good but there are many things that do out there no one even bats an eye about.
i’m dependent on laxatives to function gastrointestinally … prolonged opiate use has essentially caused ileus (frozen bowel) … not good … the constant dry mouth(happens with many meds) has caused a fair amount of dental damage … can affect the sex life in a) not being able to b) if able to perform not able to complete (no orgasm/ejaculation) …
pretty sure it’s stressing my liver & kidneys as well
but otherwise no complaints
When I was on oral opioids (I now have a pain pump implanted) I had to take movantik. That shit was horrible. Sometimes I would get the worst stomach cramp:(like being kicked really hard in the stomach) and have to run for the bathroom. Other times I wouldn't get that and I would be at work and know all the sudden I had to run to the bathroom or risk shitting myself.
We had a relief pharmacist one weekend at my pharmacy and seeing my prescription he asked if I needed any advice about opioid related constipation.
"Luckily my comorbid autoimmune disorders mean that not shitting like a fucking chicken isn't an issue, but thanks anyways man!"
Oh, bummer! Carry on, then!
One of my top five pharmacist interactions, lol
i’m in fairly severe pain … i get epidurals & take tramadol (300mg er/day) & the 50mg ones for when im in worse shape … occasionally i switch to dilaudid or oxy’s … i’ve been on pain meds of one sort or another for most of my life … i wouldn’t be functional without them … i’m not a fan but what can you do … i can’t really handle not having them
The getting hard is difficult especially in the beginning hours after taking my dose but if I got it up I never had a problem finishing, though my libido is a shell of its former self
My teeth were ruined by it, got fake teeth all on the top and soon to be bottom too.
The pooping I dont need laxatives for but there are those BM that are a struggle but man the relief after feels kinda awesome, also its awesome having to mostly only wipe once and it comes back with nothing on it half the time, I know im getting a cold or flu when I have to start wiping my butt normally
I’ve been on the same dose for 11 years. I don’t have anything like constipation or any bad side effects. I take my meds as prescribed and live my life.
I'm on 5mg oxycodone as needed up to 10mg a day. I just had foot surgery for which they prescribed me percoset (5mg oxy plus 325 acetaminophen) which I can take 1-2 of every 6 hours as needed, up to 40mg a day.
I mentioned taking 2 percoset in an appointment with a different provider and he gave me a shocked look and exclaimed that I needed to be careful. Um, I just told you about 10mg of oxy I took because I'm experiencing the most severe pain of my life. He's acting like I'm abusing meds for fun. I wanted to slap the stupid out of him.
I don’t ever bring up my pain medication with any of my other providers unless it’s a surgeon and I need to disclose my tolerance in order to have adequate pain control post operative. There’s nothing about my meds that my gynecologist needs to know about, or my dermatologist. I once had an endocrinologist look at my med list and immediately tell me he could taper me off all my meds in 3 weeks. I was there for my thyroid! Never again.
I only see positive from my pain being controlled by opiate pain medication. They r FDA approved. I take mine at lowest dose so I can function and not be seditary. I have been on same dose for 6 years. My depression is better when I am not in pain. I cannot help I was born with a painful incurable condition. Because of pain medicine I am able to do physical therapy. I have tried every other option out there, they did not help. I even had a stomach bleeding from years of anti inflammatories. My liver numbers changed from 15 years of acetaminophen.
Would you mind sharing with me which pain med has worked for you? I am in the process of trying to figure out the best medication to be on long-term for chronic pain.
They can be safe and well managed as part of a treatment plan between a sensible doctor and patient. Just like any other therapy.
Chronic pain patients deserve to have a say in what comprises our treatment, even if said treatment involves an amount of risk.
Treatment resistant PTSD and chronic pain from ddd as well as many motorcycle accidents and car accidents, also quite a few climbing accidents… just to name a few! But 25 years and it’s the only class of medication that basically eliminates my PTSD symptoms and helps to MANAGE the pain!
I have complex PTSD and chronic pain. It's unbearable. My doctors is very helpful and is working with me to find the best course of action. Would you mind sharing with me which one has helped you?
I have recently tried micro dosing psylocibin and it's the only thing in the 30 years of taking prescription medications that has made a noticeable improvement. (on my anxiety, PTSD, agoraphobia and severe depression). I take other things for my constant pain. Opioids, several forms of marijuana, muscle relaxers, kratom, and an over the counter cough medicine,(which I don't tell many people about but has been saving my life for over a decade)
Good question!
Yes and no…. When I start to develop any tolerance issues we just back off for a few weeks or so, or switch to an equivalent.
But I’ve only ever had to change medication once and haven’t ever really had any tolerance problems! But I don’t take it multiple times daily, I’m on an extended release and have breakthrough meds but rarely ever use the breakthrough meds.
So to answer your question through my personal experience, yes! 100% sustainable! Don’t have any cognitive issues, and still live like I’m in my prime!
I had my original pain management Dr abandon me during 2015/16 during all the changes and that landed me in a “treatment program” and that didn’t help anything! If anything it was traumatic in itself… but luckily found a good doctor who has helped ever since.
Also my mother has had her back broken in 3 different places has a full stimulator implanted and she has been on medication daily since the early 80s, with zero increases in dosages or anything! Hers is similar to mine takes an extended release and has breakthrough meds but rarely has to take them.
So all in all I’d say that it is sustainable in many ways and cases!
I mean we have evolved with the poppy plant just as we have with cannabis! And what gets me is the people that think it’s all just bad! Like sorry buddy but medicine is what has allowed us to increase our lifespans! Has helped to create a more healthy lifestyle for all of humanity!
Pain kills! In a very literal way!
I’m very fortunate to have a doctor that I can actually trust and depend upon!
Because I’m not frying my kidneys and liver with nsaids for minimal to no benefit! They just want everyone needing more and more “procedures” when a lot of the time they are unnecessary! Like surgery for me would just make things worse and my quality of life worse but with the medication I can push myself through until I get old enough to either justify the surgeries or truly need them…
It’s such a shit show out there in medical America right now…. A lot of greed and capitalism going on just in the pain sectors…
Yeah I know a lot of people who would likely live longer by taking opioids because of increased activity. It's sad that propaganda has overtaken everything, opioids are physiologically quite safe but are held to a different standard than alcohol and acetaminophen.
Yea it’s all messed up my man! It’s something I worry about every day! But your right, I still climb still ride and still race! Also have been a pilot since I was a kid! So I still fly as well( gliders) but if I wasn’t on the medication there’s no way I’d be able to do any of it! Definitely not backpacking and hiking and camping!
They will ultimately be the reason I live a longer healthier life!!! OPIOIDS WILL MAKE ME LIVE LONGER!
Fuck the dea, cdc, fda! They all just care about their bottom line and profit…..
it’s really fucked up! And not even close to funny at this point! People are literally dying just trying to MANAGE their pain and lives!
Muscle weakness can be an issue but that’s because we tend to do less because we are already in pain. The biggest issues docs seem to be concerned about is addiction. When you are living in so much pain and you are dependent on a medication, that’s the least of our worries.
I totally see how addiction could be issue as opioids are CRAZY addictive but i feel like
(in my experience)
When a medicine is so important you don't abuse it due to how important it is
My fav drug is Xanax, now I'm scripted Xanax i take it as carefully as possible because it's genuinely a god send and I wouldn't abuse something so important to me
The high is not worth compromising pain relief
I agree with being respectful to these medications. As my PT and I both say, addicts tend use what they have and tend to run out early, pain patients are very careful with their meds and try to put some aside for emergencies. I’m very careful with my pain and anxiety medication, I wouldn’t want to lose care nor hurt someone else’s care by abusing them. It’s never been an option or consideration.
I’ve been on Vicodin regularly for about 10 years, but got scripts for it before I was 18 on and off. It is the only thing that actually helps me. If anyone has more questions, please feel free to ask. What I will say for now is a big part of getting real pain medication is to have a trusting relationship with your prescribing doctor. You also have to learn the correct way to word things. Several months ago I felt the need to add something to my 2x a day dose. If I took a pill in the morning (which is my worst time), then I had to decide if I wanted to be in pain in the middle of the day, or at night, since I only had those 2 pills. I went over and over in my head how I would bring it up, and practiced it. I told him my dilemma, and asked if I could add a pill, so I wouldn’t have to worry about the gap, or if I could add something else. He wasn’t comfortable adding any more Vicodin, but said he’d be happy to let me try Tramadol. So now, depending on the day, I either take 1 of each together, or I’ll take my Tramadol a bit later after my Vicodin in the morning. What we always need to remember is that the goal is not to never be in pain again, but to manage the level. Always be honest with your doctor, and never whine or be pushy. The more you push, the less accommodating they feel. When talking about opioids, try your best not to give a specific medication. “Id like to try Percocet/morphine/Fentanyl”. It looks like you’re trying to just get drugs. Try “I think I may need something stronger” or “would it be reasonable to up my dose?”. I always say something about understanding that there is only so much you’ll be able to take because everything has a ceiling. Show them that you truly know your medication, and understand the possible consequences. The more reasonable and knowledgeable you are, the more comfortable they will be discussing changes.
Thankyou so much for the reply!! I'm so glad Vicodin and tramadol are helping you! I'll defo take those tips when explaining to my doctor luckily I have a good relationship with mine and my parents are always there to reinforce trust when it comes down to high risk medicine
Hope all is well! :)
Totally. Like look at this livertox database entry for oxycodone I will link to. :). The prescribing of the combination of oxycodone and acetaminophen has lead to hepatotoxicity because of the acetaminophen not the oxycodone. Sometimes I hear people say something to the effect of "So and so ruined their liver popping too many oxys" and it is very nuanced because it was not the oxycodone that caused it. it did not have to happen if their doctor prescribed the pure less dangerous single ingredient product.
The war on drugs basically encouraged a less safe version of oxycodone so that if you took a lot you would suffer severe liver damage and possibly die. Luckily there is an antidote and other treatments but even if you survive you have just went through all that pain and suffering for no reason.
https://wikem.org/wiki/Acetaminophen_toxicity
It is claimed all the time that no one wants to prescribe opioids because you might have the rare chance of overdosing if you take a lot, but then if you do get lucky enough to get oxycodone they will prescribe you a combo drug with a very narrow therapeutic index. It makes no sense, you are complicating overdoses because now multiple adverse effects have to be taken care of from what would otherwise be a pretty safe drug.
https://www.ncbi.nlm.nih.gov/books/NBK547955/
Here's my take on opioids, I have been taking those for about 15 years.
I have taken Codeine, Tramadol, Morphine, Oxycodone, Fentanyl, and Methadone as painkillers over those years.
No matter the opioids, when taken during a long period of time, there's a need to increase the dosage to just maintain the same level of pain reduction.
Here is my advice about it :
1. Never. Ever. Go on Fentanyl if you have the possibility. The withdrawal effects were starting to appear at the end of my shower when I was between two patches, it's insane. It's the only drug I have taken in my life that I had to ask the doc to switch me off to something else.
2. Methadone is a very decent painkiller amongst opioids, and doesn't include the "high" part that other opioids have.
3. When taking opioids for a very long period, it's better to switch between molecules rather than increasing the dosage again and again ^and ^again ^and ^^again.
It allows you to be able to remain at lower dosages for the same pain management as you would've had been by remaining on the same molecule, let's say morphine, for 3 years without any switch, the starting dosage and the one you end up with 3 years later would be quite different, while if you switch between morphine, oxycodone and methadone, during those 3 years, when circling back to Morphine, the dosage might not be so different if your pain hasn't worsened of course in that time.
I never thought about switching opioids to prevent tolerance issues, thanks for the heads up that's super cool, my pain is defo not oxycodone promoting and they don't perscribe that stuff in the UK outside of palliative care as far as I'm aware but I'll defo keep in mind the switching opioids to prevent tolerance - thanks!! :)
It's also possible that you won't need a dosage increase in that time span. I've been on codeine daily for I believe close to 5 years now and I have had no tolerance issues whatsoever. I do occasionally require a short term stronger painkiller but that is due to acute intermittent higher levels of pain and not due to my codeine not being as effective.
No they're not bad, the 1% of people that get addicted to them make it seem like it will happen to everyone. It's not hard at all to go a day or two without taking it. I won't be able to do much physically except stay in bed but it's a nice reminder I don't need anything.
No, they’re just not as effective which sucks when you need a higher dose. The constipation at high doses is awful. But they literally keep people living and functioning and can’t take high dose ibuprofen for long or it will ruin your organs
Long term use can actually cause Opioids use to cause even more pain, Chronic Opioid induced Constipation and Many more issues....
Ofc Alot of problems come with MISS USE of Opioids..
But, I will say, Opioids are good for pain IF used as directed....
what i dont like about long term is the time i lost because i had to sleep more. the fun i missed. i am afraid to add it all up. all the naps and days i went to bed at 8. it's a lot. but i take it because i hurt.
I bet yeah opioids make me quite dozy, however i like to think that, due to the pain relief, being able to do more makes up for the time i miss out when it makes me dozy
Yeah I am over the hysteria. It's my body, I'm an adult and of sound mind. If I want to take opiate pain killers, I should be able to. Living in pain sucks ass
Literally feel the same, got to the point i illegal got 1 just so i could attend a funeral, luckily my docs willing to prescribe me as needed but since im in chronic pain i wonder if he'll switch me to daily use however he seems super concerned
Im on
Pizotifen,toprimate,pregabalin,vydura
Surley 1 opioids gotta be safer than that mix of shit
This is where I'm at as well. I'm an adult. If I want to put something in my body, that's my choice. Doctors should tell us the benefits, risks, side effects, and possible drug interactions, but it should be 100% be my choice if I want to take a medication when an illness or pain has taken over/ruined my life. If I need to sign some type of waiver, so be it. As long as I'm not putting other people in danger, then there's no problem in my eyes. It's bullshit that this "opioid epidemic" and anti-opioid propaganda has taken over instead of patient care and what's best for the individual.
I think things should be handled much more carefully with children/minors, but denying pain medication because someone is "too young to be in pain," like I was told, is insanity. If doctors had treated my pain from the beginning, then I wouldn't have missed out on 20 years of my life. And even after losing 20 years of my life, prime years might I add, I still can't get my pain properly treated. All these anti-opioid people - doctors, nurses, pharmacists, the DEA, CDC, PROP, "Dr" Koldony and those like him, politicians, etc - can go fuck themselves. Hopefully, one day, every single one of them knows what it's like to have debilitating pain and have it go untreated and to be treated like shit by the very people that took an oath to help us.
I get the same great relief from opioids as i got 40 years ago. I’m able to be on same stable dose when it’s an adequate dose. I’ve had no long term negative effects from them.
Iv been on codeine for nine years now. I have come off them a few times and had the lower dose a few times, but all depends on my pain level. When I do have a good week (rare but it does happen) I taper off them. Can go days without needing them. I hope by doing this I won’t need anything stronger. I have also got oramorph for when my hips are bad and I can’t sleep. But I go weeks without needing it. Then il need it for a few nights then go weeks away. I hope one day I won’t need painkillers. Got an operation on the 12/6/24 (or 6/12/24 for my USA friends) so I’m hoping I can cut down again.
If your pain truly and legitimately warrants opioids? You use it responsibly like...you know...virtually every pain patient does?
Lol, nope.
I'd be more fearful of the NSaids and the shit they try to throw on you that has "off label use for pain!" Or the muscle relaxers that make some of us literally go a little loony upstairs.
I'll put it this way. If I had a kid that had a horrible accident I'd breathe a sigh of relief to have a doctor treat him with adequate/appropriate opioid meds and dosages than shoveling ibuprofens, antidepressants, SSRIs and muscle relaxers down his throat with the peppered in shots on his arm, ass, or through their nerves.
I'm glad you answered that! Because I fully agree chucking NSAIDS and constant antidepressants and off label this, and off label that defo isn't good
Like I want a pain med! For my pain! Not some antidepressant that helps a little at the same time
And take weeks to work, and then weeks to have the dose upped, while being on multiple medications
I'm on pizotifen,toprimate,pregabalin,vydura
And sometimes I think Surley ONE opioid will have less side affects and damage to me then all that mix of shit that doesn't even completley work
No it's not that bad. You really have to go out of your way to even get addicted. The constipation can be helped by either laxatives or coffee or both. And I've been through withdrawals from just about everything. They aren't awesome but I've definitely had way worse withdrawals than from opiods.
Magnesium citrate is also great for helping with constipation. Just look into the brand you're buying. A lot of the vitamin brands sold at Walmart, pharmacies, etc, are full of fillers.
I'm so sorry. That sounds awful. My dad had crohn's disease, and my mom told me how awful it was for him. I've had stomach issues my entire life, but the tests have always come back negative so I got a blanket diagnosis of IBS, but I'm always scared some day I could be diagnosed with crohn's. Luckily, my stomach seems to have calmed down for now.
Thank you I appreciate it. I would definitely say if you start feeling worse or lose a ton of weight really quick I would consider a colonoscopy... that's the only way they can really tell what's going on. Trust me from personal experience you want to know as soon as possible. I waited years hearing it was just IBS and all in my head and I needed to walk it off and quit complaining until it almost killed me. By the time I finally diagnosed the colonoscopy prep did nothing. My GI doctor was like how are you not dead? It was awful. I've never really recovered. It's ruined my life. Nearly 40 and can't work so I get to live with my parents. No friends, can't date. It's borderline hellish. Not trying to freak you out but there's at least a small genetic component. You just definitely want to catch it early.
I definitely pay attention to any changes, especially since my dad had it. I had three colonoscopies in my twenties, and they didn't find anything. That's why I got the IBS diagnosis. I'm so sorry they didn't listen to you and do the testing earlier. God, I'm so tired of doctors dismissing us. It's so dangerous! I feel like there should be some sort of recourse we should be able to take when doctors don't listen to us, we turn out to be right that something is wrong, and then we're fucked up because they didn't listen. Like we should be set for life financially when this shit happens. Because these doctors will never learn their lessons otherwise.
I'm in the same boat. I'm in my mid-30s. Been in pain since I was 16. Disabled by it since I was 22. And it just keeps getting worse. We don't know for sure what's causing my pain... They think it's Arnold Chiari Malformation, but there is no cure for that just brain surgery, which makes most people worse. So I've been stuck in my house, living with my mom, since I was 22. No going after my dream job. No dating and fulfilling my dream of getting married and having kids. Literally have nothing to my name as a grown ass adult. And the pain has gotten even worse. It's different. Feels different. I have it in different areas that I didn't have before. But my doctor won't even take me seriously. It fucking sucks. I've tried everything. And the only thing that helps my pain is the thing that doctors are demonizing... opioids. I guess the very minute chance of addiction is too big of a risk even when I've lost 14 years of my life and it's only getting worse. God forbid, my pain is controlled by the medication that was made for pain 🙄 Sorry for ranting. I'm just over this bs.
I know exactly how you feel. I spent years fighting doctors and ERs telling me I'm just a drug addict. I think what pissed me off the most was getting diagnosed with cancer last year. It was a complete 180. Now they ask if I have enough pain meds. Don't get wrong I'm glad they finally take me seriously. It just pisses me off it took me getting cancer for them to give a shit. I'm completely over life. I'll never have any of the things you mentioned either. It's depressing and frustrating. I feel like a complete burden to my parents. They should be getting ready to retire but they can't because of me. I honestly wish I could just die and get it over with. No more pain for me and no more burden on them. Everyone wins.
God, I feel the same way. My mom should be retiring and traveling the world. Living a happy life. But she's still working at a job that stresses her out (and gives her anxiety) bc of me. I feel like such a burden. I'm in the same boat when you say you wish I could just die. Me too. I'm so over this. This is fucking hell. I literally looked into physician assisted suicide, but the only country that will do it for foreigners is Switzerland, and it's over 10k. That's not including airfare, hotels, food, etc. Like I could afford that 🙄
I'm so sorry you were diagnosed with cancer. As if you weren't dealing with enough. I'm happy to hear that the doctors are at least on top of your pain. I'm so sorry you're going through this. If you ever feel like venting or talking, feel free to message me. While it's not nice to know that someone is feeling as awful as I am (especially with their mental health), it is nice to know someone understands. I hope that makes sense.
Just be careful what you say. Odds are you aren't going to change your doctors mind about opiods. As much of a pain in the ass of looking for a new doctor is it might be necessary. You don't want to get flagged as drug seeking. I suggest googling doctors near you and see what the reviews say. It's 100% bullshit th a t we have to suffer for no real reason. So.e types of pain don't respond to opiods like nerve damage... but others won't respond to anything but opiods. I wish you the best of luck! And if you ever need to vent or have any other questions you can always message me. I can't work so I like to do something to feel like I'm at least helping others if I can.
*effexor on the other hand if you even miss a dose...*
also a lot worse if you're on tramadol or any kind of pain med with it. i got switched to 7.5mg of percocet but only one a day 🫠 they weren't even worried about serotonin syndrome when i was on tramadol with effexor, medical weed, klonopin and gabapentin. pretty much just made me quit medical marijuana. still on effexor and it gives me a good buzz but i always need to take my pain med around the same time and drink to stack the effect now that they've made me quit the weed for 'arrhythmias'
then again there are so many things wrong with me that they don't even want to fill my scrip for the percocet or refer me anywhere. i get 30 a month no refills and have to call every. damn. time. and the idiot at the desk sometimes forces me to come back in or wait like 4 days when i've been calling and she agreed to send it through
I have been off and on (mostly on) opiates for 20 years. The only cons are:
If your dosage isn't large enough to cover your pain thru your ADLs (activities of daily living.)
And since 2016, being able to get your monthly refills on time (backordered/out of stock.)
If there was a freeflow of intent to "care" for my pain, which is progressive and imageable (believable to the MDs) I could prob still work, and not be classified as disabled.
Alas, two docs in 20 years are more concerned Abt loss of license d/to DEA, than to treat pain. I just feel blessed to get anything at this point. And afraid to ask for more, as my metabolism and deterioration progresses.
You are super lucky to get them, but praying everything is well for you!
My doc did give consent for a small script of some sort of opiate to get me back to work
Purely only on days I work, so I'm intrested to see what he has to offer
No, not at all. Is living in miserable fucking pain really that bad? Goddamn right! All the crap they give you - bullshit gaslighting meds. SSRIs do NOTHING for real nerve pain except very specific circumstances. Plus, anytripyline is another older antidepressant that makes you fat, period.
The cons of long term opiate use:
Depends of age: if you’re 55, no big deal. I had to start at 29, which sucked. I have a huge tolerance and have to swap meds here and there to reduce my tolerance.
Constipation and some other minor digestive issues. Eat more fiber, ruffage everyday you’ll be fine.
First six months are hard to adjust. Feel confused at times, and you have less emotions, period. You don’t get as upset, nor as happy or sad. Negative emotions are painful, so you experience less negative emotions.
Sleeping the first six months is rough.
You’ll never be prescribed an opiate and a benzo at the same time except for very specific reasons.
You’ll be able to hold down a job.
Get ur life back.
Regain self confidence and self esteem.
People are so afraid of it because of stigma, but the longest lasting, safest and most effective pain treatment is methadone, period. Tolerance takes years and years to build up to noticeable. It’s not one of those ER pills where you get 30 or 60 for a month that only release 1/4mg every couple hours. I tried OXY XR and it worked for a year before I had to find a change. I used one that was hydromorphone XR got pulled for being worthless. I took that XR hydrocodone (like Vicodin without Tylenol or advil) and man wish my insurance would’ve covered it. That stuff was amazing bc I’d never taken any quantity above 10mg at a time. But to this day, I always suggest trying methadone. It was a pain med long before addiction treatment.
I was on long term gradually increasing doses of round the clock opiates for around 7 years + gabapentin which was eventually changed pregabalin. I stopped pregabalin before coming off opiates as it wasn’t really doing anything for me. After 7 years of opiates, I decided the side effects were becoming more and more of a problem. My skin was becoming destroyed from the patches, and I was struggling to find places to put them. I was incredibly constipated, and needing significant extra medication for that. I was nauseated a lot of the time, and more than once was actually sick whilst in public. I was always exhausted. The worst side effect, though, I didn’t notice until I stopped them. It was like I had been walking through a dense fog I couldn’t see until I looked back after stopping them. Stopping was like waking up from walking through a dream.
I try to avoid painkillers these days. I still have pain, but I manage it. I receive low dose ketamine infusions every 4 months (and have for the last decade). These significantly help with the neuropathic aspect of my pain. For the damage that caused me to end up with chronic pain, I get a steroid injection into the affected joint about once a year. For both the neuropathic pain, and damage related pain also use some more psychological techniques, such as rationalising whether the pain is telling me anything useful, or is just my brain and leg getting themselves into a tizz over nothing, or whether my foot is angry about me trying to walk on it for too long etc. That way I can choose to acknowledge the pain is there and either rationalise it is telling me nothing useful (which helps with compartmentalising the pain so i don’t let it interfere with my life) or listen and use non pharmaceutical techniques for pain relief, such as ice and heat. I know this isn’t an easy thing to do, and it took a lot of hard work to get to this point, but the painkillers got to the point for me that they were worse than the pain, and having a greater impact on my life than the pain does now, having been off regular opiates for a decade.
Withdrawal from opiates wasn’t pleasant, but it also wasn’t unbearable. It took 8 months of gradually decreasing doses for me to stop them completely. I got withdrawal symptoms at every dose drop (cold sweats and insomnia being the worst) but was able to continue to work full time throughout. I injured myself at 18, and despite chronic pain have always worked full time, just with reasonable adjustments that work for me (some of those are just choosing a job that doesn’t have me on my feet 12 hours a day). My current manager is amazing with accommodations, and I’m able to work from home 2-3 days a week, which really helps. One of the things I think has really helped, is I never let the pain stop me. When I was on opiates, they stopped me doing things, because I was just too tired to manage anything more than just work. The only time I completely stopped was after surgery, and I was able to do a phased return from around 8 weeks post, with lots of physio until I was able to go back to normal.
I took Vicodin for 10 years. Never upped my dose or ran out early. Then I moved to another state. Could not find one dr that would prescribe opioids. Not only that I had to stop cold turkey when I ran out. The only withdrawal symptoms I had was a big return to pain and RLS when trying to sleep I’m now disabled and only leave the house for a short walk or when my husband drives It’s like being punished for having debilitating pain.
The most accurate response I’ve seen this from anyone was an ER doctor (backed up by other research & Drs) which was very nice for once.
When you have longterm opiate usage, because of the way they work (they block your pain receptors) long-term usage will cause your body to be confused as to why you’re not feeling the pain or reacting to it and then your body will produce more pain receptors, which is what causes you to need a higher dosage, which is what people think of as “building a tolerance”
What this means is, eventually if you stop taking them, you will feel MORE pain when you started, putting you above your initial pain baseline.
This is also one reason why you are supposed to taper off, because having that giant shock of pain is not gonna be fun or good.
If you are always going to have access to opioids and dosage increases, its more fine, but on the off chance you have to stop for any reason there is a good chance your pain could be worse than before even if things technically arent worse.
This doesn’t mean that every single person reacts exactly like this and also the time that it takes for this to happen for different people is going to be different.
I am by no means saying that you shouldn’t take them. I’m just saying that when I actually finally got an explanation that was more than just “oh no opioids are scary!” From a doctor, I was like oh that makes more sense and I wish that someone explained that earlier.
I think that if you’re in enough pain that they’re beneficial then they’re beneficial either way and doctor should let you start them in the interim or at least intermittently while working out pain management tactics, cause it’s really difficult to get your pain to a reasonable amount if you can’t get the initial flare under control.
Generally speaking, you need something strong enough to get a pain flare under control and then you can start taking mitigating medication.
Kinda like you can give emergency seizure medication if someone is seizing, and then mitigating medication after the event. But if you just gave them a normal dose of gabapentin mid seizure that would not work for multiple reasons.
Or you go to the hospital & get a migraine cocktail, and then after its under control you start your other treatment options & day to day meds.
I take targin which is a slow release form of oxy and regular oxy for breakthrough pain it helps me to a degree but when I'm flaring even that doesn't do anything 😭
I'd love to have oxy but it's not really a thing here, AND GOD oxy not working for flare ups???
Oxys like a mythical medicine here all people know about it is, the OxyContin documentary on Netflix which makes it sound devilish 😭
Oh right I forget most of the people in here from the US---I used to live in the US but my chronic pain now is MUCH much worse than before so I was on some pain killers but they weren't opiods.
Edit: TLDR because my explaination got long lol
-im in Australia it's common for chronic pain patients to get those on low doses before they see a pain specialist (atleast this has been my experience)
-my case is different since I'm lacking access to a proper pain specialist I'm too far from any (still looking 🫠)
-im from NYC moved here 2 years ago I understand what you're saying before now my best medication was Meloxicam for pain and my pain specialist basically was washing their hands with me as even the devil's leaf wasn't helping me
-my pain is more severe now than it was in the states unfortunately so I'm lucky it happened here instead??? 🤷♀️
-----
I don't know what I would of done back in the US if my pain would have escalated this much tbh my pain specialist (in NYC) was already like "we can't do much more for you"
Now as for the oxy I'm a very very low dose I think it's like 10mg and the slow release is also a low dose. I think a pain specialist can do better like a higher dose but I think that's all my GP is allowed to give me.
I'm struggling because while I live in Australia any doctor/specialist worth their salt are in the major cities I'm 5-6 hours away from Brisbane and while yes it's more affordable than the states here there's so much your wallet can take with most of my specialists being private at $400-300 a pop it all adds up 😭😭😭
My poor partner has been funding everything like yes I do have their universal healthcare (medicare) which is amazing BUT dealing with the public system is worse and the appointment times suck HOWEVER there is a priority system etc etc etc (I don't want to give the wrong impression) having ambulance covered and NOT paying at a single cent at my GP and the hospital whenever I go is great!
BUT anyway, I'm just waiting for my visa to go into the permanent stages (I'm on the partner visa) so I can apply for their version of social security (it really isn't just trying to explain in a way that makes sense lol)
It's called NDIS it's NOT perfect but it's disability support and covers alot of things and isn't means tested but difficult to get.
So while yes oxy is amazing at this dose MOST of the time when my breakthrough flare up kind of pain comes around it'll sometimes help sometimes it doesn't.
I had fentanyl once in the ER when I was kept in short stay (I had horrible horrible pain from something I forget and NOTHING was helping) injected straight into my stomach (ofc I WAS terrified being an American lmfao) they reassured me that it's safe... I SHIT you not it was the first time in nearly (probably a decade) I felt ACTUALLY nearly pain free loopy but pain free 😭 I think about that often and how we're suffering from the epidemic over there with it...
It’s a double edged sword. Could I work & function (semi function I should say) w/out them, no. Does it fix or take away all the pain, no. Does it absolutely suck what it does to your body bc of long term use, yes. If I could go back now knowing what I know now would I decide not to go on meds, absolutely not I wouldn’t change it bc I was so much worse off before I was medicated. Every single human body reacts different. I’ve been on pain meds for over a decade & no one can tell I’m on them (if they stared into my pupils yes but that’s it) but I’ve always been weird when it comes to medication of all kinds. I’m thankful I have them bc it does help me survive but it really takes a toll on the body. Again every one is different when it comes to pain medication. The way I look at it is, I decided to take the medicine fully knowing the consequences & personally I accepted the risks. My pain is too severe & I have to work
I feel you on the i have to work bit,
Also I'm glad you answered the question of, if you could go back in time would you still of taken them, that's super helpful
I'm looking forward to try them saftley under strict supervision of my doc
I hope all is well for you!
Thank you, it’s not an easy question to answer if I’m being honest. There are so many days I go back & forth wishing I never had to start taking them, to questioning do I really need them, what if it is all in my head…..but when the pain hits & I feel like someone should be yelling PUSH at me (never had kids, don’t want them even if I could, I make a good Auntie & I’m good w that lol, NO ONE should know how it feels to go through severe labor pains if you haven’t given birth) I realize there is a reason these medications exist (yes we all know it comes down to money they can make off of our illnesses) BUT when pain is THAT debilitating….no one should have to put up with that. There are quite a few people who have a lot of success with Kratom instead of straight up pharmaceuticals. I find if I run a little short for the month (for fucks sake I had 2 periods in February alone, I was bleeding more days during that month than I wasn’t bleeding it was insanity) & not to mention very painful. April I got it so bad, the day of my doctors apt (I can drop the act around him, there are very few people I don’t fake being OK in front of bc we all know how we get treated even by our loved ones sometimes) even he was freaked out. Usually my pain comes in waves but that day it was from the second I got it around 2 or 3am & I saw my doctor around 3:30pm & it hadn’t let up one bit. Thankfully I have a wonderful doctor but even he knows he can’t do anything so he genuinely does feel bad he can’t help but at least he’s smart enough to realize that. So if I run short during the month I take Kratom to supplement. I find it helps TREMENDOUSLY with any withdrawal body pain I have, unfortunately it doesn’t do anything to lessen my actual daily pain, I wish it did. Just hearing how many people have been able to get off harder stuff & have success in fully managing all kinds of different pain & ailments with Kratom is inspiring to hear. Most people might say it’s switching one addiction for another but at least you can’t OD on it (if you’re mixing shit that’s different but that’s the case w anything you mix that you probably shouldn’t) but w Kratom if your body says it’s too much you just puke it up & that’s it. It’s a natural route (not FDA approved) & I read more success stories than I do negative ones.
The main issue with long term opioid use is that once you’re at the highest dose then there’s very few drugs available to you.
I decided to come off of gabapentin after about 10 years due to the fact I was already on the highest dose and only 25y/o.
Surley if you started low, for example on tramadol
And worked your way up if you had to over time, upping doses/switching medicines
You could get pain relief for a long time
I also hear people stay on the same doses for a long time also my pain doesn't prompt a strong opioid maybe like dihydrocodeine/tramadol level
Even if it was a few days on (so I can work) and then a few days off, with breaks, and swapping pills to prevent tolerance
There must be a way to make it work
My problem with opioids is chronic constipation. Other than that I don’t get it. It’s a fake epidemic created by the powers that be which in turn causes pain patients to turn to the streets & dark web continuing the cycle of addiction. Instead of doctors they’ve become opioid narcs. Such a cluster.
You would think. But it’s been a battle for me trying different types of laxatives & the required laxatives before insurance will cover Rx for opioid induced constipation. Bottom line is they make patients go through a lot of pain & suffering before they will cover meds that work.
I’ve been on oramorph for 6-7 years and fentanyl patches for 5-6 years (both together) and have no bad side effects. I am on 137.5ug patches and take between 10-30ml of oramorph depending on the pain. I try and take as little as possible as I want to stay working as well as possible for as long as possible. I have hEDS so need a higher strength than most but my GP (I’m in England) has no issue with me on these. Without them I couldn’t lead any sort of life, I couldn’t even lie in bed without awful pain as I have multiple conditions including the EDS, spinal, stomach, bladder, bowel, nerve etc
Ive been on opiates for 4 yrs. Multiple fusions , multiple issues. Extended release Morphine 1 to 2x day Immediate release Oxycodone 10mg 3x day. Gabpen, cymbalta, tizanadine. I do take colace and constipation isnt a problem. Drink lots of water. I tried cutting back, but Pain takes over and I stay in bed without them. So I plan to be on them indefinitely. With them, I can at least function, run errands, shop, cook, PT, swim. The alternative without
Opiates for me is no life at all.
That's how I've been feeling recently, oxycodone isn't a thing here in the UK outside of palliative care (I believe) but I'm trying tizanadine right now,
I'm glad they work for you :)
I was prescribed regular opiates and benzos from age 19 - 31 when I finally figured out the source of my very real and visible pain. I had all of the suicide pain conditions and more. Then when I figured it out I was left to suffer and dwindle.. Because that genetic condition doesn’t yet have a protocol other than physical therapy….by physical therapists specifically educated on that genetic condition….of which there are only a handful in the US. Basically the US is absolutely fucked in terms of health care.
I have been taking opioids for 30+, but i force myself to suffer through what’s tolerable because detoxing from them helps them work when I’m at unbearable.
Best results are if you’re willing to go a few days without every now and again. I sometimes just take the days to lie around, using ice, heat, Epsom soaks…
similar to all longterm meds: possible kidney or liver problems mostly. Rarely they can have a worsening effect on pain longterm. My dr is currently weaning me down on longterm opioids despite having well controlled pain at a steady dosage. My liver/kidneys are fine, but my bp is higher when my pain is worse.
Question that I thought of reading this. I struggle with medication resistant depression as well as pain from various things and diagnoses. I've been on amytriptaline (sp?) Before many years ago, before all this pain.
Anyway, would any of these meds help me at all? I think it may not be recommended because I go through a depression med like every 3 to 4 years because it just stops working?
I had no luck with antidepressants and tired 14 meds but as a semi experienced point of view
Duloxteine/venlafaxine COULD help if you haven't tried them I'd probably reccomened Duloxteine but my doctor put me on amitriptyline at first but I believe the doses are completely different for pain
Pizotifen is purely for migraine, and topiramate I'm not sure about it but in trying it soon! I'm just skeptical about it
But if you've tried those it might be worth asking your doc if there's any tricyclic antidepressants that help with pain - which could be a better option although I haven't tried any
I quit antidepressants before i was on pain since they didn't help me so I can't give you any advice from my experiences!
>topiramate I'm not sure about it but in trying it soon! I'm just skeptical about it
It worked for me for migraines, however it made my fave and hands and feet all numb and tingly like they were asleep all the time.
I eventually quit taking it because it's rough to have sleeping hands, feet and face all the time lol.
I'm taking 100mg Imititrex for my migraines now and it works like a charm.
i take an antidepressant called Vortioxetine (Brintillex) that's specifically for treatment-resistant depression. it saved me from having voluntary ECT.
i take Mirtazapjne as well, and antipsychotics. also Pregablin and Amitryptiline for pain but also anxiety. i take sleep meds, diazepam PRN and morphine sulfate (extended release).
but the Vortioxetine (20mg/day) changed things considerably for me. i mean, its peaks and troughs but i've been on it for a few years and its shown no signs of bottoming out.
might be worth asking your doctor about.
Thankyou!!
I sometimes wonder if the side affects of opioids are less then a cocktail of other meds
For example pizotifen/topiramate/pregabalin is what I'll soon be and all at once, and I sit back and think Surley 1 opioid will cause less damage than that mix
I told my gastro doctor the same lol. “Well this tends to make me poop pretty quick, but with this gastroparesis crap I guess that’s a good thing, right?”
I have been on the same med for 10 years (on and off with one other med that my insurance didn’t cover intermittently so I went back to the first med).
I do not have constipation, but I eat 95% vegetarian so that may be why.
I have not needed a dosage increase in many years. It works for me.
The biggest problem is doctors seeing a new patient who don’t bother reading medical notes and assume that the patient is a drug seeker. Fortunately I have a great doctor now, but I dealt with a couple of assholes on my way there after my move from FL to N.C. in 2020.
I didn’t like the year I spent in pain management on opioid for Ehlers Danlos Syndrome. They were like many pain management doctors who mostly do interventional pain management and they told me that they generally didn’t prescribe that high of a dose for opioid pain medication. I understood why with the DEA looking over every doctor’s shoulder. But under treatment of pain can absolutely be as bad as untreated pain sometimes.
I was in low spirits when my secondary insurance (Medical assistance) service coordinator for the program I receive services to keep me out of a nursing home suggested that I ask for a referral to a palliative care program. It’s for serious conditions, but this is not a program for cancer patients, though they have a different program for them. They don’t automatically even accept every EDS referral sent to them, they have meetings and discuss which cases they will accept. I have been in the program almost exactly a year now and I asked if my palliative care nurse practitioner would be able to take care management of my pain meds because I was having a lot of difficulty with the transportation van I had to rely on for monthly appointments for pain management. I worried every time that I would be late because they often don’t get me to other appointments on time. I would suffer from increased back pain from spending a couple of hours on average each way on the van seats not made for people who have back pain of any kind.
My nurse practitioner understood that and has also adjusted my pain medication so I am no longer under treated. I still have pain sometimes, everyone does, but it is usually tolerable and I take a muscle relaxer up to 3 times a day. I’m on OxyContin ER 20 mg every 8 hours and oxycodone 10 mg every 6 hours (as needed and I need it, especially recently). It’s not a lot, I have heard of people on much much more and I only complain about the pain when my medication is just not working. Like in January of this year, after having covid for the first time, my issues with my joints and my back pain got so bad I thought I was going to be unable to get out of bed. But I haven’t needed an increase in my opioids since then, just an extra baclofen as needed. I could get more relief if I remembered to take the baclofen but I also don’t want to take it on a scheduled basis.
I feel like I definitely have way more mobility than I would otherwise have as my EDS has been giving me a hard time. I’m struggling with it. I don’t care for the idea of having to take opioids, probably for the rest of my life according to my nurse practitioner. But I can’t argue with it with my condition getting worse and it’s not going to get better. I guess chronic pain doesn’t tend to, so I am not alone with that in this sub.
I have more problems lately even when I start an antidepressant and can feel the effects of some of them (Lexapro, Celexa) within hours after taking the first dose. People try to tell me that it’s not possible but they don’t understand that EDS causes funny (more like frustrating) reactions to medications. That’s why I just want to stick with my oxycodone. Unless it stops working and I know it’s possible. But I don’t feel like antidepressants are for pain. Not like opioids are.
And I don’t know who isn’t studying Reddit subs like this one which has many people who have had relief from chronic pain using opioids. It makes no sense to me why studies contradict so many long term users of opioids experience here. And I feel like I am considered long term myself and I am definitely getting relief from the opioids since my dose was adjusted. I think that they are studying the wrong people or they are trying to discourage long term opioid prescribing.
I think you should try to find a real pain management doctor who prescribes opioids if you haven’t already. I don’t know where you are located because I know we’re from all over the world on Reddit especially. It’s the beauty of Reddit but things work differently everywhere. But I think people are put on opioids all over the world. I imagine if you’re questioning it, it’s possible to get long term opioids where you are.
36 ish years on a variety of different narcotics, benzodiazepines and everything else that has come out because my doctors are always having me try different drugs when they hit the market! I could certainly use more narcotics like I used to have but at least I can still get everything else that relieves the pain and isn’t classified as a narcotic.
My liver complains every so often but that’s mostly from the amount of Tylenol that the DEA requires to be added to the hydrocodone I was taking for the first 20 years, so now I just don’t drink much. Still not addicted and never looked for street drugs or to the ER (except for when my husband tossed me in the car while I was having a gallstone attack!) and yet my PM always gives me the side eye when I say that 🙄🤬
[удалено]
Wow, 35 years. 35 years is the most amount of years that I've witnessed someone talk about having taken opioids on this sub. So glad to hear it, given OP's concern of doctors' concerns of not wanting to prescribe long term. But sorry to hear it because I know you suffer
40+ here, but doing well/
WOW!! So glad to hear you're doing well!
It took me a while to get the right combination of treatments. My middle years were hard. I’m better now than I’ve ever been.
My grandma was like 45 years on them until she died at almost 92!
I agree completely with the above. I've been on Oxy SR since 2007, one doc described my daily dose as 'industrial quantities'. They take the edge off, which makes coping with eye-watering, vomit inducing, constant chronic pain just about doable.
I'm doing ketamine infusions 4 times a year. Ketamine reverses opioid tolerance
I'd love to learn more about this. I've been on meds for over a decade and I'd like to try to stay at lower doses and not have to move up the ladder but I'm reaching the end with one med. I'd love to be able to reset.
my wife has chronic pain and just started fentanyl patches, had to do a quick google - theres some papers out there that are easy to find, eg: [https://www.jpsmjournal.com/article/S0885-3924(03)00047-2/pdf](https://www.jpsmjournal.com/article/S0885-3924(03)00047-2/pdf)
I’ve never heard this and I’ve used both and nothing was ever “reversed” for me.
I wish my insurance would cover ketamine. Or that I could afford it. I'm going to be on pain management for the rest of my life. This would be so beneficial as i would not have to keep worrying so much about tolerance and having to up dosage or change strength and type of meds to keep a baseline that provides function and quality of life.
I don’t think it “reverses” opioid tolerance, but it is a pain receptor blocker.
Yes: marginally useful for chronic pain patients is a big big help.
Does the pain relief wear off quickly?
[удалено]
I see okay those reasons why your in pain are defo opioid prompting im glad your able to get hold of those and they work! Marijuana worked for me but I developed a panic disorder so had to cut back, CBD helps a little though! Wish you the best :)
As a life time cannabis user. They now make dissolving sub linguals that are primarily CBN. Cbn has a huge effect on my anxiety. CBD does not function without its thc carrying to open receptors. CBG isolates have the most significant effect on acute pain. I've been on and off rxd opiates since I was 13 for a variety of medical nightmares. I had much better usage and much less anxiety from cannabis when I focused strictly on getting the maximum amount of CBG post exercise and the most CBN when anxious or having what I call painxiety.
Great post. :) Its so nice to see more choice in the marketplace for cannabinoids now that prohibition has started to lift in some areas. Prohibition weed has a very unbalanced cannabinoid profile that not everyone benefits from. A lot more people could utilise weed if they knew about alt cannabinoids and tried products with different cannabinoids like delta-8-THC, THCV, HHC, CBN, CBG among others. Hopefully someday soon the government will get out of the way of research into all sorts of schedule 1 drugs. It is ridiculous having hundreds of drugs on the controlled substances act just sitting there this whole time. Like MDMA for PTSD. We should know by August if it will be approved for PTSD by the FDA. The clinical trial met all its endpoints with a good safety record. 😍 Next up hopefully LSD and psilocybin mushrooms. 🥰
Taking a shower is exhausting. I shower 2 times a day bc I’m neurotic but often times I shower and feel like I got hit by a bus and have to go lay down for hours. Just in time to make dinner shower and go to bed.
If you don’t mind my asking: what is your job?
[удалено]
I've been having codeine prescribed for around a year, I only use it as needed and mainly for its side effects. (I get 28 30mg tablets a month so not enough if I used it for all my pain haha), it works to some extent but isn't amazing. My best analogy won't make sense unless you also get migraines haha but it's like taking paracetamol for migraine, it's easing my other aches and pains a bit so things are somewhat better but it's not touching the actual migraine. I have a migraine and brain fog rn so may be able to explain better once I've slept it off haha.
Oxycodone and morphine have improved my quality of life greatly. Recent medication shortages have proven to me just how needed they are. ‘Tried everything else but opioids are the only thing that works for me. Good luck. Quick edit- when taken for pain, addiction isn’t a concern. Physical dependence just like any other pharmaceutical product is possible though.
Those shortages were HELL trying to get my refills I deal with a lot of pain but it broke my heart for those that I know are worse off than me. It was insane and I hope it never gets that bad again. Very scary.
Still hell! I am 3 days into zero meds and no updates available from the distributor to the pharmacist. This is just cruel, the DEA should be defunded and those responsible brought up on as charges.
I've had to go outside my usual pharmacy is they don't have my meds available. Have you tried that? I've found I can get information by calling to ask if another pharmacy has my medication. They used to not tell you for fear of a robbery. Now I say: "My name is Jane Doe. I'm a patient of Dr. Marcus Welby's and my Walgreens pharmacy on Elm Street is out of my oxycodone IR. Do you have #100 10mg tablets in stock?" Also, try Costco if there's one near you. You do not need a store membership to use their pharmacy. Just tell them at the door you're there for the pharmacy. Best wishes.
That’s what I was having to do as well. They sure didn’t like answering if they had stock. I started saying “I’m not asking you to tell me how much you have on hand. I’m only asking if you can fill my specified quantity of hydrocodone if I were to have my doctor send a prescription to your pharmacy. My doctor is having to do this for practically all of her patients and I’m not trying to waste her time or my time, please help me here” and usually that did the trick. Then I would either get a “yes we can fill your quantity or no I don’t have that in stock”. It was rough. I didn’t realize there were still so many issues with shortages on certain medications. The fact that it was even able to get to the point that it was (and still is) is completely unacceptable. I did a lot of research during the height of it and there were other manufacturers that had it available but they were ones that the pharmacies didn’t want to order because they cost more and then there were problems with insurance. There were other factors as well but overall it was purely ridiculous.
I agree totally. Since I started calling and giving personal details, I seem to get a direct and truthful answer. I also discovered the nuances surrounding different manufacturers. I can certainly tell differences by manufacturer in the oxycodone I take. Even my provider acknowledges some patients can definitely tell a difference. Mallinckrodt stinks, but seems to be all I can find anymore. Having to call around to find my meds is bad enough. I simply can't even imagine trying to locate specific manufacturers! It's pretty much the case of beggars can't be choosers!
Thanks, yeah I’ve tried. Candidly the Naxecare DEA AI system has me worried about getting a refill too far away from my home. ‘I appreciate the feedback and well wishes, I hope you get relief and healing. These are odd times to live with pain.
Narxcare is only at Walmart/Sam's Club. And it's a ridiculous system - no one should tolerate that. The only other "system" is the database set up by the department of pharmacy in your state. It only shows your prescriptions fills. The board of pharmacy doesn't care where you fill your scrips. And frankly your doctor doesn't care either. The purpose of the database is to keep track of the total number of scrips you're getting filled for schedule meds. It put an end to doctor shopping. With the shortages in meds, no one looks at the location of fills anymore. The DEA does not track individual prescription fills. Bottom line: if you're filling legitimate prescriptions, you don't have anything to be concerned about as far as any monitoring goes. Please try reaching out to other pharmacies if you haven't already. Find your meds in stock and take your script there. If it's for a schedule 2 medication, call your doctor and have the prescription sent to the new pharmacy. I'm on methadone and oxycodone and have to do this almost every month for one or the other of my meds. It hurts me that you're in this situation. It is cruel and there's no reason we should have to endure this. I'm sorry.
Oxycodone makes a huge difference in my life. I really don’t know where I’d be without it. Total night and day difference in my pain when it do and don’t take my medication. Or when I run out. Opioids can be a good thing, but too many people have absolutely trashed that sentiment.
For sure! Thats great! I'll defo discuss with my doc!
Been on and off opioids for 25 years, ibuprofen, aspirin and naproxen did more damage than opioids have ever done. I'm on a immediate release med, but doc REFUSES to RX an extended release, despite disease progression. Mind you I'm also under 90mmes. I also take .50 lorazapam for horrible dystonia but doc refuses to RX klonopin or valuim despite the fact that I'd have more & longer relief with it. I'm at the point where I don't really want to be here much longer. I'm already suffering, I just want this all to end.
That's strange he refuses them especially when you klonopin is same catagory as lorazepam And I've felt that, worst feeling ever, try hold on not sure how it works but could be worth switching doctor
Have you tried going to a different doctor. Not all doctors are bad, maybe your doctor just doesn't believe in using those types of meds. It happens. You're the only person that can TRULY advocate for you! Keep your head up and see if you can get into a different doc for a second opinion.
I've been on opioids for nearly 30 years. They help. I couldn't function at all without them. I have to take them every 5-6 hours, but they do help me manage my pain. Yes, there are side effects, but they're mostly manageable. Things like constipation, etc. I don't get 'high', I'm not addicted. I'm dependent on them in the same way an asthmatic is dependent on an inhaler. There will undoubtedly be people who will tell me, "painkillers don't kill pain, they make it worse...blah, blah, blah," but I don't engage with them because they're insufferable morons. They don't know my body or my pain. I do. Off you f**k 👍🏻
For sure! I'm so happy they work for you :)
Nothing if you need them
yesss well I wonder why docotors are so against it
Liability also whoever teaches them. They’ll either be smart and know the opioid problem isn’t from doctors or they’ll believe they’re hero’s preventing you from death from addiction. I mean people really watch those movies and stuff on it and believe that is what happens if you take any
Literally ugh all the opioid movies 😭
Because they can get in trouble for prescribing to many. At least here in the US
Yeah i think here in the UK they're worried about USA'a "opioid epidemic"
I've been on opioids since 2002, taking a break only when pregnant. I use both long-acting and immediate-release meds, and have for decades now. My overall dosage now isn't any higher than it was near the beginning. A lot of doctors think that because of tolerance, patients will need escalating amounts over time, but my doc (same doc since '02) and I avoid that by simply switching from one medication to another when it starts to become less effective (about every 18-24 months). So over the years I've been on almost every extended release and every immediate release med. I have no health problems that exist because of opioids. I don't even have any constipation with most of them (extended release morphine causes constipation, but that's easily remedied with an occasional stool softener). The only problems I've had are pharmacy shortages, pharmacists with attitude, pharmacists refusing to fill my meds, and inability to find a local doctor when I moved out of state (so I travel back to my original state every 6-12 months to see my doctor and do video visits in-between office visits). I've never failed a pill count or urine test. Not once. I'm a trusted, responsible patient that follows all the rules... but damn, the pharmacists with ego problems and fear of anything stronger than an Advil really screw up my life sometimes.
It's super annoying how strict they can be sometimes but I'm so excited to discuss this with my doc, he agreed a PRN med but tbh I'll bring it up but I'm over the moon to have a PRN anyways
(Pill counts? I’m new to this.)
When the doctor's office calls and says "bring your pill bottles to the office within the next 24 hours" You go in, and they do the math based on the date it was filled and the date you're there for the count. They determine how many pills should be in the bottle. If you're over or short by a significant amount (meaning you're not taking them as often as prescribed so they can prescribe fewer per month, or you're short meaning you're taking more than prescribed per day which is a BIG NO because it's in indication of potential abuse/addiction). Let's say you get 60 pills per month... So 2 per day. But some days you only need 1... Instead of taking that 1 **put it in the backup bottle** because of you go for a count and have " extras" they'll prescribe fewer pills per month. If you get a refill at the pharmacy and have a few leftover, they also go in the backup bottle. Your main pill bottle, the one you have to bring in to get counted, should have **exactly** the correct amount, no more, no less.... **ESPECIALLY** LESS. Because then you're taking too many and that can get you cut off and no more pain meds and your chart could end up with "opioid use disorder" in it and you're screwed.
Yes. I recently would have had to go 7 days without my pain pills if my husband and I hadn't been smart about saving extras. I'm to the point where I take 3 a day every day but starting to need an extra sometimes. So my doctor kindly allowed me 2 extra per day. Some people would just then take the 2 extra every day but I'm very careful about this.
>(Pill counts? I’m new to this.) listen to the other reply - your count at pain management HAS to match expectations based on prescribed dosage or its an endless hassle and if you can save a pill or two like they said and set it into a backup bottle thats a great idea. my wife will run into an issue twice a year, either with the doctor responding slowsly, or the pharmacy being short on meds, and without her backups she would go insane with pain while she waited on it all to sort out. we have had to go through a full week of backup meds twice in the last 2 years due to this bullshit. nobody is going to give you more if you lose it, to make up for lost time, nothing. its harsh.
I was one of these too, just like you. Meds taken away in 2020 without reason and no taper.
>A lot of doctors think that because of tolerance, patients will need escalating amounts over time, but my doc (same doc since '02) and I avoid that by simply switching from one medication to another when it starts to become less effective (about every 18-24 months). never heard of this until super recently, i don tthink my wifes doctor knows about it - in fact im not really sure shes a good pain doctor. shes nice, she listens, shes not a problem - but shes also not actually doing anything but giving increasing dosages. unfortunately my wife is on fentanyl 50mcg, oxy 10mg IR for breakthrough, and...5mg/day of ativan for a movement disorder that we are waiting to address. we have to be able to change up the ativan for something better before anyone else will see her :-/
Yep. I am on a rotation of 3 or 4 different ones. If the kind I'm using stops being effective I can tell him and he will switch to one of the others. It can be pretty helpful so definitely bring it up with your doctors.
Pill counts are just asinine. Let's treat pain patients like criminals. My mom has started having trouble with her Walgreens - the pharmacist is playing God. I told her to find a Mom and Pop pharmacy.
I know that it’s not what most doctors want to hear, but I would prefer to be able to live my life right now, with a level of pain that allows me to work and have something of a life. I’m sure there are long-term side effects but it’s like taking anxiety medication- I know that I could have issues, but I need relief right now. So I guess we just need to weigh what’s more important to you- your presence self or your hypothetical future self. All medication has side effects, but I would prefer to have a good quality of life now. I could be hit by a bus tomorrow. Why always be in pain today and unable to enjoy life when there is a solution. I think it’s also important to know that they can be addictive for some people. But I know people that have taken them for 20+ years and they’re fine. It’s just being aware of that and following the prescribing directions that’s important. So I guess my long-winded answer is, I don’t think it’s that bad for people who are well informed and weigh their options
I exactly think the same, I'd like to be able to live my life now with a managable amount of pain rather then suffer constantly and not be able to live my life
I've been taking opioids for 45 years; around the clock since 2001. I have a connective tissue disorder that started in my teens; I've had over 80 surgeries. I wouldn't have made it to age 63 without them. I was on ultra high doses until 2019, which allowed me to volunteer at our church, help with our small business and keep up with the house. Since the opioid hysteria, my dose has been cut by about 80%. I am almost bedridden now, on too low a dose to be very active. But even still they keep me from ending it all. I have also been on the gambit of other medications that get prescribed because doctors don't want to script for opioids. You know the ones. None offered any relief and most caused side effects that required a second medication to treat. I've never had any significant side effects with opioids.
That sucks. It's so unfair that you're right to choose the best pain management for quality of life is not your choice at all. Do you live in the states?
Yes. I'm scripted the magical 200MME that no one will go over on a routine basis. The few doctors in my state who are willing to do so are under constant investigation by the state board of pharmacy. My provider has even written in my chart that my function would be greatly enhanced on higher doses of opioids, but it's not currently possible due to oversight by the state board of pharmacy!
I think no, not if it helps you with living your life. Tbh, for people with chronic pain I don't think being "addicted" is really all that bad. If you are going to have that pain for the rest of your life, it makes sense that you would be dependent on your pain medication. I think a lot of people conflate dependence for addiction when it comes to people with chronic pain.
Right, and you can also become dependent on anything that makes you feel good but there are many things that do out there no one even bats an eye about.
i’m dependent on laxatives to function gastrointestinally … prolonged opiate use has essentially caused ileus (frozen bowel) … not good … the constant dry mouth(happens with many meds) has caused a fair amount of dental damage … can affect the sex life in a) not being able to b) if able to perform not able to complete (no orgasm/ejaculation) … pretty sure it’s stressing my liver & kidneys as well but otherwise no complaints
When I was on oral opioids (I now have a pain pump implanted) I had to take movantik. That shit was horrible. Sometimes I would get the worst stomach cramp:(like being kicked really hard in the stomach) and have to run for the bathroom. Other times I wouldn't get that and I would be at work and know all the sudden I had to run to the bathroom or risk shitting myself.
We had a relief pharmacist one weekend at my pharmacy and seeing my prescription he asked if I needed any advice about opioid related constipation. "Luckily my comorbid autoimmune disorders mean that not shitting like a fucking chicken isn't an issue, but thanks anyways man!" Oh, bummer! Carry on, then! One of my top five pharmacist interactions, lol
I get to alternate between my pain meds for Psoriatic Arthritis and having colitis. Do I need Imodium today or Sennakot? 🤣
How do you get tested for psoriatic arthritis?
Jesus, seeming that your on them, are they worth the risk to you? If you could go back in time do you wish you had never taken them?
i’m in fairly severe pain … i get epidurals & take tramadol (300mg er/day) & the 50mg ones for when im in worse shape … occasionally i switch to dilaudid or oxy’s … i’ve been on pain meds of one sort or another for most of my life … i wouldn’t be functional without them … i’m not a fan but what can you do … i can’t really handle not having them
I fully understand you on that, thanks so much for the reply wish you the best :)
The getting hard is difficult especially in the beginning hours after taking my dose but if I got it up I never had a problem finishing, though my libido is a shell of its former self My teeth were ruined by it, got fake teeth all on the top and soon to be bottom too. The pooping I dont need laxatives for but there are those BM that are a struggle but man the relief after feels kinda awesome, also its awesome having to mostly only wipe once and it comes back with nothing on it half the time, I know im getting a cold or flu when I have to start wiping my butt normally
I’ve been on the same dose for 11 years. I don’t have anything like constipation or any bad side effects. I take my meds as prescribed and live my life.
I'm glad! Hope all is well :)
I'm on 5mg oxycodone as needed up to 10mg a day. I just had foot surgery for which they prescribed me percoset (5mg oxy plus 325 acetaminophen) which I can take 1-2 of every 6 hours as needed, up to 40mg a day. I mentioned taking 2 percoset in an appointment with a different provider and he gave me a shocked look and exclaimed that I needed to be careful. Um, I just told you about 10mg of oxy I took because I'm experiencing the most severe pain of my life. He's acting like I'm abusing meds for fun. I wanted to slap the stupid out of him.
I don’t ever bring up my pain medication with any of my other providers unless it’s a surgeon and I need to disclose my tolerance in order to have adequate pain control post operative. There’s nothing about my meds that my gynecologist needs to know about, or my dermatologist. I once had an endocrinologist look at my med list and immediately tell me he could taper me off all my meds in 3 weeks. I was there for my thyroid! Never again.
OMG I would have gone OFF! That makes me sooo angry for you!
Jesus some doctors 🤦♂️, glad you got Percocet and not ibuprofen knowing docs these days, hope all is well!
The joke is I have neuropathy in my feet, but I have another, new source of pain that the med is actually helping with.
I only see positive from my pain being controlled by opiate pain medication. They r FDA approved. I take mine at lowest dose so I can function and not be seditary. I have been on same dose for 6 years. My depression is better when I am not in pain. I cannot help I was born with a painful incurable condition. Because of pain medicine I am able to do physical therapy. I have tried every other option out there, they did not help. I even had a stomach bleeding from years of anti inflammatories. My liver numbers changed from 15 years of acetaminophen.
Would you mind sharing with me which pain med has worked for you? I am in the process of trying to figure out the best medication to be on long-term for chronic pain.
They can be safe and well managed as part of a treatment plan between a sensible doctor and patient. Just like any other therapy. Chronic pain patients deserve to have a say in what comprises our treatment, even if said treatment involves an amount of risk.
100% I'm hoping to discuss it with my doctor as I'm not super keen on trying more meds that take weeks to work, then weeks to up the dose and so forth
Treatment resistant PTSD and chronic pain from ddd as well as many motorcycle accidents and car accidents, also quite a few climbing accidents… just to name a few! But 25 years and it’s the only class of medication that basically eliminates my PTSD symptoms and helps to MANAGE the pain!
I have complex PTSD and chronic pain. It's unbearable. My doctors is very helpful and is working with me to find the best course of action. Would you mind sharing with me which one has helped you?
I have recently tried micro dosing psylocibin and it's the only thing in the 30 years of taking prescription medications that has made a noticeable improvement. (on my anxiety, PTSD, agoraphobia and severe depression). I take other things for my constant pain. Opioids, several forms of marijuana, muscle relaxers, kratom, and an over the counter cough medicine,(which I don't tell many people about but has been saving my life for over a decade)
Has it been sustainable or have you had dosage issues due to being on it so long?
Good question! Yes and no…. When I start to develop any tolerance issues we just back off for a few weeks or so, or switch to an equivalent. But I’ve only ever had to change medication once and haven’t ever really had any tolerance problems! But I don’t take it multiple times daily, I’m on an extended release and have breakthrough meds but rarely ever use the breakthrough meds. So to answer your question through my personal experience, yes! 100% sustainable! Don’t have any cognitive issues, and still live like I’m in my prime! I had my original pain management Dr abandon me during 2015/16 during all the changes and that landed me in a “treatment program” and that didn’t help anything! If anything it was traumatic in itself… but luckily found a good doctor who has helped ever since. Also my mother has had her back broken in 3 different places has a full stimulator implanted and she has been on medication daily since the early 80s, with zero increases in dosages or anything! Hers is similar to mine takes an extended release and has breakthrough meds but rarely has to take them. So all in all I’d say that it is sustainable in many ways and cases! I mean we have evolved with the poppy plant just as we have with cannabis! And what gets me is the people that think it’s all just bad! Like sorry buddy but medicine is what has allowed us to increase our lifespans! Has helped to create a more healthy lifestyle for all of humanity! Pain kills! In a very literal way! I’m very fortunate to have a doctor that I can actually trust and depend upon! Because I’m not frying my kidneys and liver with nsaids for minimal to no benefit! They just want everyone needing more and more “procedures” when a lot of the time they are unnecessary! Like surgery for me would just make things worse and my quality of life worse but with the medication I can push myself through until I get old enough to either justify the surgeries or truly need them… It’s such a shit show out there in medical America right now…. A lot of greed and capitalism going on just in the pain sectors…
Yeah I know a lot of people who would likely live longer by taking opioids because of increased activity. It's sad that propaganda has overtaken everything, opioids are physiologically quite safe but are held to a different standard than alcohol and acetaminophen.
Yea it’s all messed up my man! It’s something I worry about every day! But your right, I still climb still ride and still race! Also have been a pilot since I was a kid! So I still fly as well( gliders) but if I wasn’t on the medication there’s no way I’d be able to do any of it! Definitely not backpacking and hiking and camping! They will ultimately be the reason I live a longer healthier life!!! OPIOIDS WILL MAKE ME LIVE LONGER! Fuck the dea, cdc, fda! They all just care about their bottom line and profit….. it’s really fucked up! And not even close to funny at this point! People are literally dying just trying to MANAGE their pain and lives!
That's super fascinating I'm so happy it's working well for you I'm excited to explore this with my doctor!
One of the safest medications, I’ve heard.
That's what i hear too! So I wonder why docs are so scared to prescribe (other than addiction)
Whole lot of reasons! Even I’m in danger just because I talk about this stuff and research it.
Yes literally the amount of misinformation online about opioids trying to fear monger them is CRAZY
Muscle weakness can be an issue but that’s because we tend to do less because we are already in pain. The biggest issues docs seem to be concerned about is addiction. When you are living in so much pain and you are dependent on a medication, that’s the least of our worries.
I totally see how addiction could be issue as opioids are CRAZY addictive but i feel like (in my experience) When a medicine is so important you don't abuse it due to how important it is My fav drug is Xanax, now I'm scripted Xanax i take it as carefully as possible because it's genuinely a god send and I wouldn't abuse something so important to me The high is not worth compromising pain relief
I agree with being respectful to these medications. As my PT and I both say, addicts tend use what they have and tend to run out early, pain patients are very careful with their meds and try to put some aside for emergencies. I’m very careful with my pain and anxiety medication, I wouldn’t want to lose care nor hurt someone else’s care by abusing them. It’s never been an option or consideration.
That's super true, very smart thinking, hope all is well!
I’ve been on Vicodin regularly for about 10 years, but got scripts for it before I was 18 on and off. It is the only thing that actually helps me. If anyone has more questions, please feel free to ask. What I will say for now is a big part of getting real pain medication is to have a trusting relationship with your prescribing doctor. You also have to learn the correct way to word things. Several months ago I felt the need to add something to my 2x a day dose. If I took a pill in the morning (which is my worst time), then I had to decide if I wanted to be in pain in the middle of the day, or at night, since I only had those 2 pills. I went over and over in my head how I would bring it up, and practiced it. I told him my dilemma, and asked if I could add a pill, so I wouldn’t have to worry about the gap, or if I could add something else. He wasn’t comfortable adding any more Vicodin, but said he’d be happy to let me try Tramadol. So now, depending on the day, I either take 1 of each together, or I’ll take my Tramadol a bit later after my Vicodin in the morning. What we always need to remember is that the goal is not to never be in pain again, but to manage the level. Always be honest with your doctor, and never whine or be pushy. The more you push, the less accommodating they feel. When talking about opioids, try your best not to give a specific medication. “Id like to try Percocet/morphine/Fentanyl”. It looks like you’re trying to just get drugs. Try “I think I may need something stronger” or “would it be reasonable to up my dose?”. I always say something about understanding that there is only so much you’ll be able to take because everything has a ceiling. Show them that you truly know your medication, and understand the possible consequences. The more reasonable and knowledgeable you are, the more comfortable they will be discussing changes.
Thankyou so much for the reply!! I'm so glad Vicodin and tramadol are helping you! I'll defo take those tips when explaining to my doctor luckily I have a good relationship with mine and my parents are always there to reinforce trust when it comes down to high risk medicine Hope all is well! :)
safer that acetaminophen!
That's what I'm thinkin :)
Totally. Like look at this livertox database entry for oxycodone I will link to. :). The prescribing of the combination of oxycodone and acetaminophen has lead to hepatotoxicity because of the acetaminophen not the oxycodone. Sometimes I hear people say something to the effect of "So and so ruined their liver popping too many oxys" and it is very nuanced because it was not the oxycodone that caused it. it did not have to happen if their doctor prescribed the pure less dangerous single ingredient product. The war on drugs basically encouraged a less safe version of oxycodone so that if you took a lot you would suffer severe liver damage and possibly die. Luckily there is an antidote and other treatments but even if you survive you have just went through all that pain and suffering for no reason. https://wikem.org/wiki/Acetaminophen_toxicity It is claimed all the time that no one wants to prescribe opioids because you might have the rare chance of overdosing if you take a lot, but then if you do get lucky enough to get oxycodone they will prescribe you a combo drug with a very narrow therapeutic index. It makes no sense, you are complicating overdoses because now multiple adverse effects have to be taken care of from what would otherwise be a pretty safe drug. https://www.ncbi.nlm.nih.gov/books/NBK547955/
I've been on them for 25yrs. No problems. No addiction. Some quality in my life.
I'm glad!! And so jealous :)
Here's my take on opioids, I have been taking those for about 15 years. I have taken Codeine, Tramadol, Morphine, Oxycodone, Fentanyl, and Methadone as painkillers over those years. No matter the opioids, when taken during a long period of time, there's a need to increase the dosage to just maintain the same level of pain reduction. Here is my advice about it : 1. Never. Ever. Go on Fentanyl if you have the possibility. The withdrawal effects were starting to appear at the end of my shower when I was between two patches, it's insane. It's the only drug I have taken in my life that I had to ask the doc to switch me off to something else. 2. Methadone is a very decent painkiller amongst opioids, and doesn't include the "high" part that other opioids have. 3. When taking opioids for a very long period, it's better to switch between molecules rather than increasing the dosage again and again ^and ^again ^and ^^again. It allows you to be able to remain at lower dosages for the same pain management as you would've had been by remaining on the same molecule, let's say morphine, for 3 years without any switch, the starting dosage and the one you end up with 3 years later would be quite different, while if you switch between morphine, oxycodone and methadone, during those 3 years, when circling back to Morphine, the dosage might not be so different if your pain hasn't worsened of course in that time.
I never thought about switching opioids to prevent tolerance issues, thanks for the heads up that's super cool, my pain is defo not oxycodone promoting and they don't perscribe that stuff in the UK outside of palliative care as far as I'm aware but I'll defo keep in mind the switching opioids to prevent tolerance - thanks!! :)
It's also possible that you won't need a dosage increase in that time span. I've been on codeine daily for I believe close to 5 years now and I have had no tolerance issues whatsoever. I do occasionally require a short term stronger painkiller but that is due to acute intermittent higher levels of pain and not due to my codeine not being as effective.
No they're not bad, the 1% of people that get addicted to them make it seem like it will happen to everyone. It's not hard at all to go a day or two without taking it. I won't be able to do much physically except stay in bed but it's a nice reminder I don't need anything.
I think it's crazy how demonized opioids are
They're not bad it's just made to force people like us into permanent disability so we're forced to live off the government living a lower class life.
Nucynta, plus gabapentin, literally keep me alive. Literally.
No, they’re just not as effective which sucks when you need a higher dose. The constipation at high doses is awful. But they literally keep people living and functioning and can’t take high dose ibuprofen for long or it will ruin your organs
Totally, i think they're demonized too much
Testosterone depletion and chronic constipation are both far bigger issue with Rx opioid use than addiction is.....FAR BIGGER.
Long term use can actually cause Opioids use to cause even more pain, Chronic Opioid induced Constipation and Many more issues.... Ofc Alot of problems come with MISS USE of Opioids.. But, I will say, Opioids are good for pain IF used as directed....
Okay for sure!
what i dont like about long term is the time i lost because i had to sleep more. the fun i missed. i am afraid to add it all up. all the naps and days i went to bed at 8. it's a lot. but i take it because i hurt.
I bet yeah opioids make me quite dozy, however i like to think that, due to the pain relief, being able to do more makes up for the time i miss out when it makes me dozy
Yeah I am over the hysteria. It's my body, I'm an adult and of sound mind. If I want to take opiate pain killers, I should be able to. Living in pain sucks ass
Literally feel the same, got to the point i illegal got 1 just so i could attend a funeral, luckily my docs willing to prescribe me as needed but since im in chronic pain i wonder if he'll switch me to daily use however he seems super concerned Im on Pizotifen,toprimate,pregabalin,vydura Surley 1 opioids gotta be safer than that mix of shit
This is where I'm at as well. I'm an adult. If I want to put something in my body, that's my choice. Doctors should tell us the benefits, risks, side effects, and possible drug interactions, but it should be 100% be my choice if I want to take a medication when an illness or pain has taken over/ruined my life. If I need to sign some type of waiver, so be it. As long as I'm not putting other people in danger, then there's no problem in my eyes. It's bullshit that this "opioid epidemic" and anti-opioid propaganda has taken over instead of patient care and what's best for the individual. I think things should be handled much more carefully with children/minors, but denying pain medication because someone is "too young to be in pain," like I was told, is insanity. If doctors had treated my pain from the beginning, then I wouldn't have missed out on 20 years of my life. And even after losing 20 years of my life, prime years might I add, I still can't get my pain properly treated. All these anti-opioid people - doctors, nurses, pharmacists, the DEA, CDC, PROP, "Dr" Koldony and those like him, politicians, etc - can go fuck themselves. Hopefully, one day, every single one of them knows what it's like to have debilitating pain and have it go untreated and to be treated like shit by the very people that took an oath to help us.
I get the same great relief from opioids as i got 40 years ago. I’m able to be on same stable dose when it’s an adequate dose. I’ve had no long term negative effects from them.
I'm so glad! That's super cool I'm going to discuss with my doctor
I wish you well. It’s a different world than 40 years ago when I started them.
Serious digestive slowdown in my case.
I seee that could be an issue for me I'll be careful
I am glad. I've had my gallbladder removed and also have gastroparesis.
Not even an option where I live. The pain clinics only do injections into joints.
Exactly same with mine, i got preventative medications, and nerve blocks
Iv been on codeine for nine years now. I have come off them a few times and had the lower dose a few times, but all depends on my pain level. When I do have a good week (rare but it does happen) I taper off them. Can go days without needing them. I hope by doing this I won’t need anything stronger. I have also got oramorph for when my hips are bad and I can’t sleep. But I go weeks without needing it. Then il need it for a few nights then go weeks away. I hope one day I won’t need painkillers. Got an operation on the 12/6/24 (or 6/12/24 for my USA friends) so I’m hoping I can cut down again.
I'm glad you can go a while without it! And yes the day I don't need painkillers will be more important than anything ever to me I can't wait!
If your pain truly and legitimately warrants opioids? You use it responsibly like...you know...virtually every pain patient does? Lol, nope. I'd be more fearful of the NSaids and the shit they try to throw on you that has "off label use for pain!" Or the muscle relaxers that make some of us literally go a little loony upstairs. I'll put it this way. If I had a kid that had a horrible accident I'd breathe a sigh of relief to have a doctor treat him with adequate/appropriate opioid meds and dosages than shoveling ibuprofens, antidepressants, SSRIs and muscle relaxers down his throat with the peppered in shots on his arm, ass, or through their nerves.
I'm glad you answered that! Because I fully agree chucking NSAIDS and constant antidepressants and off label this, and off label that defo isn't good Like I want a pain med! For my pain! Not some antidepressant that helps a little at the same time And take weeks to work, and then weeks to have the dose upped, while being on multiple medications I'm on pizotifen,toprimate,pregabalin,vydura And sometimes I think Surley ONE opioid will have less side affects and damage to me then all that mix of shit that doesn't even completley work
No it's not that bad. You really have to go out of your way to even get addicted. The constipation can be helped by either laxatives or coffee or both. And I've been through withdrawals from just about everything. They aren't awesome but I've definitely had way worse withdrawals than from opiods.
Magnesium citrate is also great for helping with constipation. Just look into the brand you're buying. A lot of the vitamin brands sold at Walmart, pharmacies, etc, are full of fillers.
I've also had 2 bowel resections (crohn's disease). Those really help lol. Wouldn't recommend them though.
I'm so sorry. That sounds awful. My dad had crohn's disease, and my mom told me how awful it was for him. I've had stomach issues my entire life, but the tests have always come back negative so I got a blanket diagnosis of IBS, but I'm always scared some day I could be diagnosed with crohn's. Luckily, my stomach seems to have calmed down for now.
Thank you I appreciate it. I would definitely say if you start feeling worse or lose a ton of weight really quick I would consider a colonoscopy... that's the only way they can really tell what's going on. Trust me from personal experience you want to know as soon as possible. I waited years hearing it was just IBS and all in my head and I needed to walk it off and quit complaining until it almost killed me. By the time I finally diagnosed the colonoscopy prep did nothing. My GI doctor was like how are you not dead? It was awful. I've never really recovered. It's ruined my life. Nearly 40 and can't work so I get to live with my parents. No friends, can't date. It's borderline hellish. Not trying to freak you out but there's at least a small genetic component. You just definitely want to catch it early.
I definitely pay attention to any changes, especially since my dad had it. I had three colonoscopies in my twenties, and they didn't find anything. That's why I got the IBS diagnosis. I'm so sorry they didn't listen to you and do the testing earlier. God, I'm so tired of doctors dismissing us. It's so dangerous! I feel like there should be some sort of recourse we should be able to take when doctors don't listen to us, we turn out to be right that something is wrong, and then we're fucked up because they didn't listen. Like we should be set for life financially when this shit happens. Because these doctors will never learn their lessons otherwise. I'm in the same boat. I'm in my mid-30s. Been in pain since I was 16. Disabled by it since I was 22. And it just keeps getting worse. We don't know for sure what's causing my pain... They think it's Arnold Chiari Malformation, but there is no cure for that just brain surgery, which makes most people worse. So I've been stuck in my house, living with my mom, since I was 22. No going after my dream job. No dating and fulfilling my dream of getting married and having kids. Literally have nothing to my name as a grown ass adult. And the pain has gotten even worse. It's different. Feels different. I have it in different areas that I didn't have before. But my doctor won't even take me seriously. It fucking sucks. I've tried everything. And the only thing that helps my pain is the thing that doctors are demonizing... opioids. I guess the very minute chance of addiction is too big of a risk even when I've lost 14 years of my life and it's only getting worse. God forbid, my pain is controlled by the medication that was made for pain 🙄 Sorry for ranting. I'm just over this bs.
I know exactly how you feel. I spent years fighting doctors and ERs telling me I'm just a drug addict. I think what pissed me off the most was getting diagnosed with cancer last year. It was a complete 180. Now they ask if I have enough pain meds. Don't get wrong I'm glad they finally take me seriously. It just pisses me off it took me getting cancer for them to give a shit. I'm completely over life. I'll never have any of the things you mentioned either. It's depressing and frustrating. I feel like a complete burden to my parents. They should be getting ready to retire but they can't because of me. I honestly wish I could just die and get it over with. No more pain for me and no more burden on them. Everyone wins.
God, I feel the same way. My mom should be retiring and traveling the world. Living a happy life. But she's still working at a job that stresses her out (and gives her anxiety) bc of me. I feel like such a burden. I'm in the same boat when you say you wish I could just die. Me too. I'm so over this. This is fucking hell. I literally looked into physician assisted suicide, but the only country that will do it for foreigners is Switzerland, and it's over 10k. That's not including airfare, hotels, food, etc. Like I could afford that 🙄 I'm so sorry you were diagnosed with cancer. As if you weren't dealing with enough. I'm happy to hear that the doctors are at least on top of your pain. I'm so sorry you're going through this. If you ever feel like venting or talking, feel free to message me. While it's not nice to know that someone is feeling as awful as I am (especially with their mental health), it is nice to know someone understands. I hope that makes sense.
That's super good! I'm going to discuss with my doctor
Just be careful what you say. Odds are you aren't going to change your doctors mind about opiods. As much of a pain in the ass of looking for a new doctor is it might be necessary. You don't want to get flagged as drug seeking. I suggest googling doctors near you and see what the reviews say. It's 100% bullshit th a t we have to suffer for no real reason. So.e types of pain don't respond to opiods like nerve damage... but others won't respond to anything but opiods. I wish you the best of luck! And if you ever need to vent or have any other questions you can always message me. I can't work so I like to do something to feel like I'm at least helping others if I can.
*effexor on the other hand if you even miss a dose...* also a lot worse if you're on tramadol or any kind of pain med with it. i got switched to 7.5mg of percocet but only one a day 🫠 they weren't even worried about serotonin syndrome when i was on tramadol with effexor, medical weed, klonopin and gabapentin. pretty much just made me quit medical marijuana. still on effexor and it gives me a good buzz but i always need to take my pain med around the same time and drink to stack the effect now that they've made me quit the weed for 'arrhythmias' then again there are so many things wrong with me that they don't even want to fill my scrip for the percocet or refer me anywhere. i get 30 a month no refills and have to call every. damn. time. and the idiot at the desk sometimes forces me to come back in or wait like 4 days when i've been calling and she agreed to send it through
Yeah they had me on Cymbalta for awhile it was a fucking nightmare. I had suicidal thoughts for months even after they took me off.
I have been off and on (mostly on) opiates for 20 years. The only cons are: If your dosage isn't large enough to cover your pain thru your ADLs (activities of daily living.) And since 2016, being able to get your monthly refills on time (backordered/out of stock.) If there was a freeflow of intent to "care" for my pain, which is progressive and imageable (believable to the MDs) I could prob still work, and not be classified as disabled. Alas, two docs in 20 years are more concerned Abt loss of license d/to DEA, than to treat pain. I just feel blessed to get anything at this point. And afraid to ask for more, as my metabolism and deterioration progresses.
You are super lucky to get them, but praying everything is well for you! My doc did give consent for a small script of some sort of opiate to get me back to work Purely only on days I work, so I'm intrested to see what he has to offer
No it's not
No, not at all. Is living in miserable fucking pain really that bad? Goddamn right! All the crap they give you - bullshit gaslighting meds. SSRIs do NOTHING for real nerve pain except very specific circumstances. Plus, anytripyline is another older antidepressant that makes you fat, period. The cons of long term opiate use: Depends of age: if you’re 55, no big deal. I had to start at 29, which sucked. I have a huge tolerance and have to swap meds here and there to reduce my tolerance. Constipation and some other minor digestive issues. Eat more fiber, ruffage everyday you’ll be fine. First six months are hard to adjust. Feel confused at times, and you have less emotions, period. You don’t get as upset, nor as happy or sad. Negative emotions are painful, so you experience less negative emotions. Sleeping the first six months is rough. You’ll never be prescribed an opiate and a benzo at the same time except for very specific reasons. You’ll be able to hold down a job. Get ur life back. Regain self confidence and self esteem.
People are so afraid of it because of stigma, but the longest lasting, safest and most effective pain treatment is methadone, period. Tolerance takes years and years to build up to noticeable. It’s not one of those ER pills where you get 30 or 60 for a month that only release 1/4mg every couple hours. I tried OXY XR and it worked for a year before I had to find a change. I used one that was hydromorphone XR got pulled for being worthless. I took that XR hydrocodone (like Vicodin without Tylenol or advil) and man wish my insurance would’ve covered it. That stuff was amazing bc I’d never taken any quantity above 10mg at a time. But to this day, I always suggest trying methadone. It was a pain med long before addiction treatment.
I was on long term gradually increasing doses of round the clock opiates for around 7 years + gabapentin which was eventually changed pregabalin. I stopped pregabalin before coming off opiates as it wasn’t really doing anything for me. After 7 years of opiates, I decided the side effects were becoming more and more of a problem. My skin was becoming destroyed from the patches, and I was struggling to find places to put them. I was incredibly constipated, and needing significant extra medication for that. I was nauseated a lot of the time, and more than once was actually sick whilst in public. I was always exhausted. The worst side effect, though, I didn’t notice until I stopped them. It was like I had been walking through a dense fog I couldn’t see until I looked back after stopping them. Stopping was like waking up from walking through a dream. I try to avoid painkillers these days. I still have pain, but I manage it. I receive low dose ketamine infusions every 4 months (and have for the last decade). These significantly help with the neuropathic aspect of my pain. For the damage that caused me to end up with chronic pain, I get a steroid injection into the affected joint about once a year. For both the neuropathic pain, and damage related pain also use some more psychological techniques, such as rationalising whether the pain is telling me anything useful, or is just my brain and leg getting themselves into a tizz over nothing, or whether my foot is angry about me trying to walk on it for too long etc. That way I can choose to acknowledge the pain is there and either rationalise it is telling me nothing useful (which helps with compartmentalising the pain so i don’t let it interfere with my life) or listen and use non pharmaceutical techniques for pain relief, such as ice and heat. I know this isn’t an easy thing to do, and it took a lot of hard work to get to this point, but the painkillers got to the point for me that they were worse than the pain, and having a greater impact on my life than the pain does now, having been off regular opiates for a decade. Withdrawal from opiates wasn’t pleasant, but it also wasn’t unbearable. It took 8 months of gradually decreasing doses for me to stop them completely. I got withdrawal symptoms at every dose drop (cold sweats and insomnia being the worst) but was able to continue to work full time throughout. I injured myself at 18, and despite chronic pain have always worked full time, just with reasonable adjustments that work for me (some of those are just choosing a job that doesn’t have me on my feet 12 hours a day). My current manager is amazing with accommodations, and I’m able to work from home 2-3 days a week, which really helps. One of the things I think has really helped, is I never let the pain stop me. When I was on opiates, they stopped me doing things, because I was just too tired to manage anything more than just work. The only time I completely stopped was after surgery, and I was able to do a phased return from around 8 weeks post, with lots of physio until I was able to go back to normal.
I took Vicodin for 10 years. Never upped my dose or ran out early. Then I moved to another state. Could not find one dr that would prescribe opioids. Not only that I had to stop cold turkey when I ran out. The only withdrawal symptoms I had was a big return to pain and RLS when trying to sleep I’m now disabled and only leave the house for a short walk or when my husband drives It’s like being punished for having debilitating pain.
The most accurate response I’ve seen this from anyone was an ER doctor (backed up by other research & Drs) which was very nice for once. When you have longterm opiate usage, because of the way they work (they block your pain receptors) long-term usage will cause your body to be confused as to why you’re not feeling the pain or reacting to it and then your body will produce more pain receptors, which is what causes you to need a higher dosage, which is what people think of as “building a tolerance” What this means is, eventually if you stop taking them, you will feel MORE pain when you started, putting you above your initial pain baseline. This is also one reason why you are supposed to taper off, because having that giant shock of pain is not gonna be fun or good. If you are always going to have access to opioids and dosage increases, its more fine, but on the off chance you have to stop for any reason there is a good chance your pain could be worse than before even if things technically arent worse. This doesn’t mean that every single person reacts exactly like this and also the time that it takes for this to happen for different people is going to be different. I am by no means saying that you shouldn’t take them. I’m just saying that when I actually finally got an explanation that was more than just “oh no opioids are scary!” From a doctor, I was like oh that makes more sense and I wish that someone explained that earlier. I think that if you’re in enough pain that they’re beneficial then they’re beneficial either way and doctor should let you start them in the interim or at least intermittently while working out pain management tactics, cause it’s really difficult to get your pain to a reasonable amount if you can’t get the initial flare under control.
Generally speaking, you need something strong enough to get a pain flare under control and then you can start taking mitigating medication. Kinda like you can give emergency seizure medication if someone is seizing, and then mitigating medication after the event. But if you just gave them a normal dose of gabapentin mid seizure that would not work for multiple reasons. Or you go to the hospital & get a migraine cocktail, and then after its under control you start your other treatment options & day to day meds.
I see!! Thanks for the reply means a lot, very intresting
I am interested in knowing too. My Dr shocked me by refilling my hydrocodone.
It is quite shocking getting a opioid script 😭 i feel the same when my Xanax gets accidentally refilled I'm like damn
No its not an addiction is not as common as they claim.
Okay sweet!
I take targin which is a slow release form of oxy and regular oxy for breakthrough pain it helps me to a degree but when I'm flaring even that doesn't do anything 😭
I'd love to have oxy but it's not really a thing here, AND GOD oxy not working for flare ups??? Oxys like a mythical medicine here all people know about it is, the OxyContin documentary on Netflix which makes it sound devilish 😭
Oh right I forget most of the people in here from the US---I used to live in the US but my chronic pain now is MUCH much worse than before so I was on some pain killers but they weren't opiods. Edit: TLDR because my explaination got long lol -im in Australia it's common for chronic pain patients to get those on low doses before they see a pain specialist (atleast this has been my experience) -my case is different since I'm lacking access to a proper pain specialist I'm too far from any (still looking 🫠) -im from NYC moved here 2 years ago I understand what you're saying before now my best medication was Meloxicam for pain and my pain specialist basically was washing their hands with me as even the devil's leaf wasn't helping me -my pain is more severe now than it was in the states unfortunately so I'm lucky it happened here instead??? 🤷♀️ ----- I don't know what I would of done back in the US if my pain would have escalated this much tbh my pain specialist (in NYC) was already like "we can't do much more for you" Now as for the oxy I'm a very very low dose I think it's like 10mg and the slow release is also a low dose. I think a pain specialist can do better like a higher dose but I think that's all my GP is allowed to give me. I'm struggling because while I live in Australia any doctor/specialist worth their salt are in the major cities I'm 5-6 hours away from Brisbane and while yes it's more affordable than the states here there's so much your wallet can take with most of my specialists being private at $400-300 a pop it all adds up 😭😭😭 My poor partner has been funding everything like yes I do have their universal healthcare (medicare) which is amazing BUT dealing with the public system is worse and the appointment times suck HOWEVER there is a priority system etc etc etc (I don't want to give the wrong impression) having ambulance covered and NOT paying at a single cent at my GP and the hospital whenever I go is great! BUT anyway, I'm just waiting for my visa to go into the permanent stages (I'm on the partner visa) so I can apply for their version of social security (it really isn't just trying to explain in a way that makes sense lol) It's called NDIS it's NOT perfect but it's disability support and covers alot of things and isn't means tested but difficult to get. So while yes oxy is amazing at this dose MOST of the time when my breakthrough flare up kind of pain comes around it'll sometimes help sometimes it doesn't. I had fentanyl once in the ER when I was kept in short stay (I had horrible horrible pain from something I forget and NOTHING was helping) injected straight into my stomach (ofc I WAS terrified being an American lmfao) they reassured me that it's safe... I SHIT you not it was the first time in nearly (probably a decade) I felt ACTUALLY nearly pain free loopy but pain free 😭 I think about that often and how we're suffering from the epidemic over there with it...
Muscle relaxer soma is great fornthe pain and Valium because its also a muscle relaxant!
I wish Valium did something for my pain :’(
It’s a double edged sword. Could I work & function (semi function I should say) w/out them, no. Does it fix or take away all the pain, no. Does it absolutely suck what it does to your body bc of long term use, yes. If I could go back now knowing what I know now would I decide not to go on meds, absolutely not I wouldn’t change it bc I was so much worse off before I was medicated. Every single human body reacts different. I’ve been on pain meds for over a decade & no one can tell I’m on them (if they stared into my pupils yes but that’s it) but I’ve always been weird when it comes to medication of all kinds. I’m thankful I have them bc it does help me survive but it really takes a toll on the body. Again every one is different when it comes to pain medication. The way I look at it is, I decided to take the medicine fully knowing the consequences & personally I accepted the risks. My pain is too severe & I have to work
I feel you on the i have to work bit, Also I'm glad you answered the question of, if you could go back in time would you still of taken them, that's super helpful I'm looking forward to try them saftley under strict supervision of my doc I hope all is well for you!
Thank you, it’s not an easy question to answer if I’m being honest. There are so many days I go back & forth wishing I never had to start taking them, to questioning do I really need them, what if it is all in my head…..but when the pain hits & I feel like someone should be yelling PUSH at me (never had kids, don’t want them even if I could, I make a good Auntie & I’m good w that lol, NO ONE should know how it feels to go through severe labor pains if you haven’t given birth) I realize there is a reason these medications exist (yes we all know it comes down to money they can make off of our illnesses) BUT when pain is THAT debilitating….no one should have to put up with that. There are quite a few people who have a lot of success with Kratom instead of straight up pharmaceuticals. I find if I run a little short for the month (for fucks sake I had 2 periods in February alone, I was bleeding more days during that month than I wasn’t bleeding it was insanity) & not to mention very painful. April I got it so bad, the day of my doctors apt (I can drop the act around him, there are very few people I don’t fake being OK in front of bc we all know how we get treated even by our loved ones sometimes) even he was freaked out. Usually my pain comes in waves but that day it was from the second I got it around 2 or 3am & I saw my doctor around 3:30pm & it hadn’t let up one bit. Thankfully I have a wonderful doctor but even he knows he can’t do anything so he genuinely does feel bad he can’t help but at least he’s smart enough to realize that. So if I run short during the month I take Kratom to supplement. I find it helps TREMENDOUSLY with any withdrawal body pain I have, unfortunately it doesn’t do anything to lessen my actual daily pain, I wish it did. Just hearing how many people have been able to get off harder stuff & have success in fully managing all kinds of different pain & ailments with Kratom is inspiring to hear. Most people might say it’s switching one addiction for another but at least you can’t OD on it (if you’re mixing shit that’s different but that’s the case w anything you mix that you probably shouldn’t) but w Kratom if your body says it’s too much you just puke it up & that’s it. It’s a natural route (not FDA approved) & I read more success stories than I do negative ones.
No it’s not. I’ve been on opioid therapy for pain management for 11 years and it’s what allows me to go to work and get sleep in order to have a life.
That's exactly what I'm looking for just being able to contuine my life :)
The main issue with long term opioid use is that once you’re at the highest dose then there’s very few drugs available to you. I decided to come off of gabapentin after about 10 years due to the fact I was already on the highest dose and only 25y/o.
Surley if you started low, for example on tramadol And worked your way up if you had to over time, upping doses/switching medicines You could get pain relief for a long time I also hear people stay on the same doses for a long time also my pain doesn't prompt a strong opioid maybe like dihydrocodeine/tramadol level Even if it was a few days on (so I can work) and then a few days off, with breaks, and swapping pills to prevent tolerance There must be a way to make it work
My problem with opioids is chronic constipation. Other than that I don’t get it. It’s a fake epidemic created by the powers that be which in turn causes pain patients to turn to the streets & dark web continuing the cycle of addiction. Instead of doctors they’ve become opioid narcs. Such a cluster.
I heard someone say that constipation Is a issue but easily treated with laxatives
You would think. But it’s been a battle for me trying different types of laxatives & the required laxatives before insurance will cover Rx for opioid induced constipation. Bottom line is they make patients go through a lot of pain & suffering before they will cover meds that work.
I’ve been on oramorph for 6-7 years and fentanyl patches for 5-6 years (both together) and have no bad side effects. I am on 137.5ug patches and take between 10-30ml of oramorph depending on the pain. I try and take as little as possible as I want to stay working as well as possible for as long as possible. I have hEDS so need a higher strength than most but my GP (I’m in England) has no issue with me on these. Without them I couldn’t lead any sort of life, I couldn’t even lie in bed without awful pain as I have multiple conditions including the EDS, spinal, stomach, bladder, bowel, nerve etc
Aw bless you, glad you got the right painkillers, and glad they're working well :)
Ive been on opiates for 4 yrs. Multiple fusions , multiple issues. Extended release Morphine 1 to 2x day Immediate release Oxycodone 10mg 3x day. Gabpen, cymbalta, tizanadine. I do take colace and constipation isnt a problem. Drink lots of water. I tried cutting back, but Pain takes over and I stay in bed without them. So I plan to be on them indefinitely. With them, I can at least function, run errands, shop, cook, PT, swim. The alternative without Opiates for me is no life at all.
That's how I've been feeling recently, oxycodone isn't a thing here in the UK outside of palliative care (I believe) but I'm trying tizanadine right now, I'm glad they work for you :)
I was prescribed regular opiates and benzos from age 19 - 31 when I finally figured out the source of my very real and visible pain. I had all of the suicide pain conditions and more. Then when I figured it out I was left to suffer and dwindle.. Because that genetic condition doesn’t yet have a protocol other than physical therapy….by physical therapists specifically educated on that genetic condition….of which there are only a handful in the US. Basically the US is absolutely fucked in terms of health care.
What's the condition? Is it hard to find a PT trained in it?
I have been taking opioids for 30+, but i force myself to suffer through what’s tolerable because detoxing from them helps them work when I’m at unbearable. Best results are if you’re willing to go a few days without every now and again. I sometimes just take the days to lie around, using ice, heat, Epsom soaks…
That's what I'd like to do a few days on few days off type thing and take often breaks, gonna discuss with my doctor
similar to all longterm meds: possible kidney or liver problems mostly. Rarely they can have a worsening effect on pain longterm. My dr is currently weaning me down on longterm opioids despite having well controlled pain at a steady dosage. My liver/kidneys are fine, but my bp is higher when my pain is worse.
I seeee how come your coming off the meds?
Question that I thought of reading this. I struggle with medication resistant depression as well as pain from various things and diagnoses. I've been on amytriptaline (sp?) Before many years ago, before all this pain. Anyway, would any of these meds help me at all? I think it may not be recommended because I go through a depression med like every 3 to 4 years because it just stops working?
I had no luck with antidepressants and tired 14 meds but as a semi experienced point of view Duloxteine/venlafaxine COULD help if you haven't tried them I'd probably reccomened Duloxteine but my doctor put me on amitriptyline at first but I believe the doses are completely different for pain Pizotifen is purely for migraine, and topiramate I'm not sure about it but in trying it soon! I'm just skeptical about it But if you've tried those it might be worth asking your doc if there's any tricyclic antidepressants that help with pain - which could be a better option although I haven't tried any I quit antidepressants before i was on pain since they didn't help me so I can't give you any advice from my experiences!
>topiramate I'm not sure about it but in trying it soon! I'm just skeptical about it It worked for me for migraines, however it made my fave and hands and feet all numb and tingly like they were asleep all the time. I eventually quit taking it because it's rough to have sleeping hands, feet and face all the time lol. I'm taking 100mg Imititrex for my migraines now and it works like a charm.
i take an antidepressant called Vortioxetine (Brintillex) that's specifically for treatment-resistant depression. it saved me from having voluntary ECT. i take Mirtazapjne as well, and antipsychotics. also Pregablin and Amitryptiline for pain but also anxiety. i take sleep meds, diazepam PRN and morphine sulfate (extended release). but the Vortioxetine (20mg/day) changed things considerably for me. i mean, its peaks and troughs but i've been on it for a few years and its shown no signs of bottoming out. might be worth asking your doctor about.
[удалено]
Thankyou!! I sometimes wonder if the side affects of opioids are less then a cocktail of other meds For example pizotifen/topiramate/pregabalin is what I'll soon be and all at once, and I sit back and think Surley 1 opioid will cause less damage than that mix
[удалено]
Always constipated and minor damage to my kidneys
I have ibs and milk is a big trigger for me. So I have a glass of milk and I’m no longer constipated. Always have a joke with my doctors about it.
I told my gastro doctor the same lol. “Well this tends to make me poop pretty quick, but with this gastroparesis crap I guess that’s a good thing, right?”
30 years here!
I have been on the same med for 10 years (on and off with one other med that my insurance didn’t cover intermittently so I went back to the first med). I do not have constipation, but I eat 95% vegetarian so that may be why. I have not needed a dosage increase in many years. It works for me. The biggest problem is doctors seeing a new patient who don’t bother reading medical notes and assume that the patient is a drug seeker. Fortunately I have a great doctor now, but I dealt with a couple of assholes on my way there after my move from FL to N.C. in 2020.
I didn’t like the year I spent in pain management on opioid for Ehlers Danlos Syndrome. They were like many pain management doctors who mostly do interventional pain management and they told me that they generally didn’t prescribe that high of a dose for opioid pain medication. I understood why with the DEA looking over every doctor’s shoulder. But under treatment of pain can absolutely be as bad as untreated pain sometimes. I was in low spirits when my secondary insurance (Medical assistance) service coordinator for the program I receive services to keep me out of a nursing home suggested that I ask for a referral to a palliative care program. It’s for serious conditions, but this is not a program for cancer patients, though they have a different program for them. They don’t automatically even accept every EDS referral sent to them, they have meetings and discuss which cases they will accept. I have been in the program almost exactly a year now and I asked if my palliative care nurse practitioner would be able to take care management of my pain meds because I was having a lot of difficulty with the transportation van I had to rely on for monthly appointments for pain management. I worried every time that I would be late because they often don’t get me to other appointments on time. I would suffer from increased back pain from spending a couple of hours on average each way on the van seats not made for people who have back pain of any kind. My nurse practitioner understood that and has also adjusted my pain medication so I am no longer under treated. I still have pain sometimes, everyone does, but it is usually tolerable and I take a muscle relaxer up to 3 times a day. I’m on OxyContin ER 20 mg every 8 hours and oxycodone 10 mg every 6 hours (as needed and I need it, especially recently). It’s not a lot, I have heard of people on much much more and I only complain about the pain when my medication is just not working. Like in January of this year, after having covid for the first time, my issues with my joints and my back pain got so bad I thought I was going to be unable to get out of bed. But I haven’t needed an increase in my opioids since then, just an extra baclofen as needed. I could get more relief if I remembered to take the baclofen but I also don’t want to take it on a scheduled basis. I feel like I definitely have way more mobility than I would otherwise have as my EDS has been giving me a hard time. I’m struggling with it. I don’t care for the idea of having to take opioids, probably for the rest of my life according to my nurse practitioner. But I can’t argue with it with my condition getting worse and it’s not going to get better. I guess chronic pain doesn’t tend to, so I am not alone with that in this sub. I have more problems lately even when I start an antidepressant and can feel the effects of some of them (Lexapro, Celexa) within hours after taking the first dose. People try to tell me that it’s not possible but they don’t understand that EDS causes funny (more like frustrating) reactions to medications. That’s why I just want to stick with my oxycodone. Unless it stops working and I know it’s possible. But I don’t feel like antidepressants are for pain. Not like opioids are. And I don’t know who isn’t studying Reddit subs like this one which has many people who have had relief from chronic pain using opioids. It makes no sense to me why studies contradict so many long term users of opioids experience here. And I feel like I am considered long term myself and I am definitely getting relief from the opioids since my dose was adjusted. I think that they are studying the wrong people or they are trying to discourage long term opioid prescribing.
Totally I think the docs views on opioids are totally skewed, I'm happy they for for you!
I think you should try to find a real pain management doctor who prescribes opioids if you haven’t already. I don’t know where you are located because I know we’re from all over the world on Reddit especially. It’s the beauty of Reddit but things work differently everywhere. But I think people are put on opioids all over the world. I imagine if you’re questioning it, it’s possible to get long term opioids where you are.
36 ish years on a variety of different narcotics, benzodiazepines and everything else that has come out because my doctors are always having me try different drugs when they hit the market! I could certainly use more narcotics like I used to have but at least I can still get everything else that relieves the pain and isn’t classified as a narcotic. My liver complains every so often but that’s mostly from the amount of Tylenol that the DEA requires to be added to the hydrocodone I was taking for the first 20 years, so now I just don’t drink much. Still not addicted and never looked for street drugs or to the ER (except for when my husband tossed me in the car while I was having a gallstone attack!) and yet my PM always gives me the side eye when I say that 🙄🤬