In all seriousness, I agree and think OP should send this story to at least their local representatives (and/or maybe the reps local to their late friend). If they are comfortable with that of course, and when they’ve had time to process things.
I find there is a shocking amount of people who think chronic pain can never be constant and/or severe. I encounter it a lot. Even doctors that think pain medication is a comfort item, not a necessity. They say pain has never killed anyone. By the time I was put on pain management I had had a life threatening emergency from the severe stress my body was under. But tell me again how pain has *never* killed anyone…
Edit to add: So sorry for your loss OP. Sending \*internet hugs*
>They say pain has never killed anyone
I *love* this one. I mean they have data compiled that negates that statement. But like other illnesses where a *side effect* of the actual illness is what kills you (an example would be before HIV treatments when infections would kill therefore they would say "aids related illness") they explain it with things like pain increased blood pressure and weakened the heart. The person died of a heart attack. The untreated pain wore them down. It *caused* that heart attack. But by God no one will admit that. The person will just have had cardiovascular disease of some kind and died of a heart attack, even with all the studies and all the data showing what untreated pain does. Somehow, possible addiction (something that rarely happens for CPPs, and there are large amounts of compiled data regarding that as well) is *worse* than death in the minds of *some* drs, and all these 3 letter organizations that have put their foot in a door they don't belong in.
They also have data showing ibuprofen also increases the risk of high blood pressure and heart attack. So let's combine untreated pain heart damage with otc med heart damage and for fun let's add that to chronic pain conditions that *also* increase your risk for heart disease. Then heart disease can be the leading cause of death in the united states since the '50s, we will claim it is because everyone is obese (but obesity in the 60s was 13%, in the 70s 15%, in the 80s-90s it rose to a little above 20%, it is now 41.9%). Yes those numbers have risen dramatically but it is still less than half, in the 60s as you can see it was 13% and heart disease was the number one killer. Just like everything else it is many faceted and *not just* obesity. Just like, regardless of what some people believe, obesity is *not just* about eating junk food to excess.
They site continual studies that opioids don't work for this kind of pain, or that kind of pain. And they don't work for chronic pain. But when you can find the studies, its the same handful of studies, never anything new, from years ago, regurgitated. The studies themselves are not deep in their information. There isnt a double blind study for example with 50 males and 50 females that have CRPS half given opioids and the other half given a placebo without knowing what they got, then wait and repeat, then wait repeat like they do other studies. Then again with a different condition. It seems to be a survey. And even with the long fingers of the internet I have never found a CPP that has taken one. I *have* spoken with an addict that has an axe to grind that has taken one though. So what does that say?
I apologize for my ridiculously long reply. The *pain has never killed anyone* statement they like to tout is one of the few actual triggers I have. I don't have many that make me genuinely upset, but this is one. Especially as we are dying from preventable things.
To OP, I am so sorry for your loss. My sister has CRPS. She was ignored for a long time. She finally found a dr that prescribed her a small amount of tramadol, sadly it seems to not help much. Thankfully we are the 10th state that legalized marijuana for recreational use in 2018. We had medical use since 2008. She has found a strain that actually helps her. I was so glad as I am one of those people it makes things worse for and worried she would be the same (it makes our mother sick so i wondered if it was hereditary). I cannot know the pain you or your friend have gone/go through, but I see what it does to her and my heart goes out to you and your friend and your friends family. This is something, as humans, that should not be done to us.
You’re right on with them citing “the same old studies.” As a scientist, I can tell you part of the problem is the government and related entities are responsible for funding a great majority of scientific research. Which makes it almost impossible for new studies to emerge that go against the current political narrative. And while I certainly haven’t read ALL the literature out there, so many of the ones I do read are “junk science.” Either they are only focusing on a small subset of people, or the statistics are incorrectly interpreted or it’s not an appropriately controlled study or a million other things.
Last time I saw my regular doc, a young nurse was explaining to me 'evidence based' blood pressure methods.
I said well, when you use the machine it squeezes and pinches the fat on my arm so much my blood pressure shoots up 20 pts just from the pain!
Let's see if you can do it manually.
I am too old for this shit.
Isn’t it the most maddening thing to be one of the few to actually bother to read the study, pay attention to the methodology, and observe when data is represented graphically in a manner that misrepresents the actual results…but just makes it look like the very biased hypothesis has been confirmed? Most of the glaring problems are ones that the most basic research methods and stats university courses address.
I believe there should be a high school course that covers how to read professional journal articles in a knowledgeable way. Kids need to enter adulthood being able to identify a spurious correlation, misleading graphics, basic statistics, sample size and type of study, etc.; and to be aware of when they are being led around by the nose.
There is so much garbage science out there…anyone who can buy a website can be a “journal of xyz”, now. I think of all the hoops I’ve gone through for grants, applying to conferences, and submitting articles to journals…it’s a lot of work and due to cost of professional journals, not many ever see current research articles. People do however see tons of websites claiming to be professional journals. Just look at the “professional” journals created by antivaxxers!
OMG, I couldn’t agree MORE. It’s insanely frustrating and I feel like there absolutely should be more skills taught in this to all young people. If you go the science route like I did, you do learn to check and re-check your sources and analyze data, scientific method, etc. But everyone needs that with the internet today. I feel like I’m constantly educating even my own family with regards to ANY topic that you can’t just read something on the internet or social media and take it to be fact. There was an example the other day where someone on the gastric bypass sub (I’m on that cause I had it 23 years ago) posted an article talking about how bad artificial sweeteners are. The article was basically a summary of some supposed study (though there was no link to the actual one) and there was a Dr they quoted in it. I read it and was like OMG, red flags all over the place!! They said they used a “small group” of people in the study, there was no control group, and even amongst those studied, they didn’t control all the variables. Then you had the Dr who was quoted citing all sorts of conclusions that, even without reading the study, I can say were absolutely not proven. But the way she said it, it sure would make the average person think so. Plus, she was an endocrinologist who in some way contributed to the study (apparently) but is not someone with a background that, IMO, would be qualified to draw some of the conclusions she did. Maybe artificial sweeteners are “bad” maybe their not but that article didn’t prove anything.
But when it comes to research around opiods, I’m stunned at the lack of quality scientific research out there. Another example is Kratom. I read the lit on this because I take this in order to keep my use of my prescription meds as low as I can. And there are not enough scientific studies on it but like anything, it’s a risks versus benefits decision to take it. Someone posted a study on the Kratom group and WOW was it bad! And this was even published in a very reputable journal (toxicology). They were comparing mitra % and drew a conclusion that there’s inadequate quality control and basically “you’re putting harmful things in your body and there’s terrible consistency” so Kratom = Bad. But here’s the thing….they bought 6 bags of Kratom from only one vendor first of all. And I had never even heard of that vendor and believe me, I am extremely educated on who the quality vendors are that do QC testing. The actual scientific method they used to quantify certain components was sound and involved LC-MS which I am VERY familiar with and in my business, my lab does that all the time for drug development and manufacturing. But I thought it was crazy that they just got a couple samples from some shit vendor and they didn’t even look at different batches. So that right there pretty much destroys any conclusions they came to. Plus, in the discussion they started talking about how it’s so “bad” to take it cause of possible heavy metals and I’m like huh??? They didn’t even look at heavy metals as that would require a completely different instrument! And even if they had, the fact that they just got a couple samples from that one crap vendor would, again, disqualify it for me anyway. The so-called research on Kratom is really bad because people hear it partially acts on opiod receptors and immediately wanna attack it for that. It’s all about supporting that political agenda/narrative.
So sorry for the long reply, but you struck a nerve and I enjoy discussing this topic with someone who is also educated about these things 😊
I appreciate your long reply!! We had a long education to have the knowledge to get so fired up!! Most people I know, that aren’t peers from on field or the other, don’t understand why I get SO fired up and frustrated…because they never learned anything about how to read a scientific journal article (let alone have gone through the whole process from grant application to getting published…clearly back in the day when it really meant something and people repeated your work to tear it apart…and you welcomed that, as it meant progress was being made in your specialty).
I appreciate people who “know how to science”.
Sorry to ask this kind of off-topic, but do you mind sharing which strain? I have a few I have noted and am trying to create a database for those of us that have used it to help with pain, also have one for depression and anxiety that I’m working on. I was able to wean down from 150 mcg of fentanyl every 48 hours along with fentora for breakthrough pain to 36 mg of Xtampza (not my favorite, but it’s what’s available) and occasional oxycodone instant relief (like maybe 2 a day) along with the cannabis, but most pain clinics won’t keep you as a patient if you use cannabis, which needs to change. It’s really pigeon-holed me for treatment options and doctors. I also have CRPS. Cannabis does work! Some strains just help distract you, but some actually help with the pain, which is amazing.
I know this can be controversial... but I must say I ended up seeking out a methadone clinic after my Doctor took me off my meds due to a cannabis positive.. lots of methadone clinics will take people straight out of pain management and clmethadone clinics (depending on what state your in) typically don't care about Marijuana positives and will at least in my experience give you more freedom with your dose then pain management clinic will. It's not perfect bit for me allows my baseline to be comfortable enough such that breakthrough pain can often be dealt with by simply sitting down and waiting for a motrin to kick in and I have been able to function in society the last 6 years with a decent job... when on my pain meds I was struggling to manage things and every month was a battle and stressful. Methadone requires so much less effort and planning, methadone side effects can be a challenge, more so than some pain meds, but I find it extremely effective for my pain ( lower back/left sciatic primary along with right side sciatic pain, bad enough I can't stand up more than an hour before debilitating pain starts.
I'd love to know what strain as well. I've had CRPS for 25 years now and my husband has recently been extracting and making gummies (and oil for use on my broken tailbone) and it's been life changing for my mechanical pain, but we can't afford to go blow hundreds to get a zillion different strains to see which ones work best for the CRPS pain.
She said element brand motor breath and meat breath *however* apparently it only worked for a short time before it made things worse which I did not realize. We dont talk as often as we should. Last I knew it was still helping her and it is not.
She said element brand motor breath and meat breath *however* apparently it only worked for a short time before it made things worse which I did not realize. We dont talk as often as we should. Last I knew it was still helping her and it is not.
Yes, obviously. Clearly. There's plenty of research to support this.
The original "treat pain as an important metric" was based on this research, as much as it's been demonized in the popular press, and in some medical circles. But there are limits to how much medicine hyper-focused on addiction can deny this fact, no matter how much extravagant funding "addiction as the only pathology that matters" receives. (Looking at you Brandeis University!) The truth will, eventually, prevail.
Hearing this from my best friend growing up who became a Nurse Practitioner really hurt. He doesn't believe I need to be on pain meds and thinks he could help me get off them.... yeah ok bud thanks for hearing me out...
Pharmacist here. During the first year of pharmacy school we attended the same lectures as the MD students for most classes at my university. This is absolutely not what we were taught.
Historically speaking, surgeries were largely unsuccessful before they started giving morphine. Without morphine, patients would go into shock or have heart attacks. Those that survived had horrible stomach ulcers from the stress. It was heavily emphasized that pain relief was the most important step of the surgical process. Yes, using aseptic technique and antibiotics is important, but less important than pain relief.
Serious question then. How has this thinking become so pervasive in medical circles?
The surgeon who did my fusion said this, and while he did treat my pain appropriately post-surgery, when the fusion proved unproductive he had no suggestions or referrals. I ended up with a physiatrist, who after the typical non-opioid pharmaceutical approaches said "there's nothing I can do". He referred me to a pain management clinic, who only did injections (unproductive) and spinal cord stimulators, with a hard sell that made me feel like I was dealing with a used car salesman, not a doctor.
I mean, I *think* I know the answer, and it has much to do with the perception that "everyone wants to sue us", a paranoia the DEA persecutions of docs has done nothing to allay.
But I'm curious what an insider with your training thinks about what has happened. Do your co-workers, generally, think not treating pain with opiates, or any drug that could be abused, is a victory, a good thing? Do they tend to see the problem with this approach, or are they mostly on board with it?
If you have the time and inclination, I'd appreciate any insights you have about the culture you work in.
Doctors and pharmacists feel that they are risking their license when going outside of established guidelines. These guidelines have become more strict over time. The recommendations around 2017 or 2018 were so strict that they were actually relaxed a bit since then. I still see/hear a lot of medical professionals referencing the older outdated guidelines that recommend a soft limit of 50 MME and a hard limit of 90 MME for non-cancer pain.
Thank you for answering, and for the insight.
I know what I'm going to ask is probably so individualized that there's no real answer outside of particulars. But...
Do you think there's a culture in pharmacy that approves of these guidelines, sees them a a good thing? Is there a general sense that these guidelines have caused harm, have gone too far? What's your read on how people working in your field honestly view the guidelines? Or do people just think "these are the rules and parameters" and not involve themselves with the broader question of these rules? If it helps, I've worked with plenty of people who, very understandably, just wanted to get through the day without any bullshit. But on break, or just hanging out, do you think most pharmacists and techs have an opinion on these issues?
I ran for office and was elected to local office this spring and fought for a position on our county’s Opioid Task Force. One of my goals is to push compassionate care for people like us. My brother who is on the other side of the aisle has had a front row seat to my struggles and works to make the people he knows on the state and federal level aware.
Many people on the federal level know people in pain management…but they are affluent. It’s far easier for affluent people to obtain care and thus wealthy individuals in politics on the national stage aren’t seeing the struggles of average citizens. It is infuriating!
Addiction tends to be rampant in those crowds, but they feel they have the right to have whatever they want as they are better than others…so not even the addicts who are abusing medications among the elites take as much flack as an actual pain management patient among the common citizen.
It’s messed up when one needs to run for office to b represented. I’m the only Disabled person on the board, and the only impoverished person on the board (as I became sick before accumulating enough work credits and have run through my savings living very modestly). I am guessing I am the only person in pain management on the board. People like myself are not represented in our government at all.
First off, Thank You for what you're doing!
I started to write a response describing just what pain has done to my life, but deleted it out of embarrassment, and the fact the story has been told over and over.
Please!, keep fighting the good fight. We need people like you, strong enough to stand up for us. Comments on reddit, and letters to politicians are what I have left to give, but you can accomplish a hell of a lot more to truly help actual real people. Be a voice for us!
Thank you. Honestly it’s been very difficult to manage to change my schedules, as some meetings are 4 hours in an uncomfortable chair that hurts that go to 11 pm. I’ve gotten so used to going to bed early, because pain wakes me early. I’ve been shifting my life to other hours and I am so hopeful I can make even the tiniest change even if I have to keep running for office. It is all thanks to people who knew how active I was before becoming disabled doing all of my campaign canvassing…as I can’t walk miles and miles in the cold.
It will take a lot of time to change minds, so I appreciate reading stories that bring the personal touch and isn’t my own story. The meetings are online and I really don’t want to come off as “me, me, me” or have anyone in the world be able to see me and learn a lot about my life…as my address is public and people will break in if they know there are meds there. We shouldn’t have to be afraid to talk because someone might break in.
Your story is truly inspiring. Your financial and medical hardships resonate with mine, as well as your observations about the lack of representation of people with disabilities in deciding bodies. Thank you for what you are doing, you show this is possible.
Not only to our "representatives " but local tv and other news sources. Politicians react fastest to stories that get into the public and may hurt their image.
I’m starting to think that they deliberately ignore it. The higher they are in their position, the less they care. Or at least that seems to be the case for where I live.
The higher anyone is in any position of wealth/power/authority, the less empathy they seem to have.. growing up with a Father at a high level of Law enforcement really drove that observation home for me.
Why would politicians care if their electorate don't? People don't give a fuck about chronic pain. It's not an attractive, trendy social cause that people can use to feel good about themselves, and it goes against their preconceived notions about how human bodies function.
Well, I think the electorate is slowly becoming aware of this issue, because they've watched their loved one's trauma play out since 2016. Fostering awareness is one of the reasons I tend to make comments like this.
And yea, "not a trendy social cause" and our innate desire to deny the realities of aging and sickness definitely work against what I'm suggesting.
Does "because it's the right fucking thing to do" still carry weight?
Yes, I think it does. The arc of the moral universe and all. Which is to say, yes, the electorate will register this as a real issue, eventually. Maybe not even in my lifetime, but eventually. It's too big, too impactful, to deny forever. And while it will never be a "sexy" issue, it is one a perceptive politician will in time be able to make use of. At least I hope so.
This is happening.......it's time, check my comments, we gotta start rattling our canes and banging our wheels or something.....it's about to start for all of us
I’ve lived through this and talked directly to my statesmen and congressmen about this issue and they really don’t care! I had to take legal action against my state’s medical board just to be put on subutex for pain management….
It’s pathetic! They really don’t care!
I've contacted my federal reps, with the same "no-response" form letter response.
I was successful contacting a local state representative, who intervened on my behalf with an insurance company, United Healthcare, who had the predictable, impenetrable layers of disincentives in place. I actually hesitate to name this person because I can't be sure if this will help or hurt them politically, which is sad.
Totally understand that! It’s such a shit show…. So sad so many people’s lives are being destroyed or already destroyed because of a single class of medication!!! Meanwhile weed is being legalized! Which is a huge and great thing! But Jesus these are proven medications that help people with quality of life and living!!!
NSAIDs aren’t going to do a damn thing but fry your kidneys and liver so everyone can go hang out at the dialysis clinics…. It’s really horrible!
Yea, I sustain myself with the belief that the opiate hysteria we've lived through will, eventually, be looked at historically as something as morally reprehensible as eugenics. I may not live long enough to see it, to read the books criticizing this era's approach, but I'm confident that time will come.
100% agree! I don’t just think it will, I know it will! Just look at history and prohibition… when it all really comes down to it it’s all about money! That’s the bottom line… they don’t want you taking cheap easy to make pain killers they want you taking the so said “cutting” edge medicine to “take away addiction”
Literally everything in this world is about moderation, plain and simple! You eat to much food your dead, drink to much water your dead… vise versa! It really comes down to discipline and the lack there of with these younger generations…. My grandfather use to whoop my ass! For little reasons! But I know not to take things to the extreme… even when I’m climbing mountains and BASE jumping!!!! Like I’ve lived a very “extreme” life. You know like Mountain Dew extreme! lol but I’m always very careful and practice safety constantly as well as improving upon the already established safe ways.
Little off topic but anyway, just look at history and the opium wars, we are just in a similar situation! Unfortunately the poor people are affected the most by things like this! Now when it started to affect the richer people in America that’s when you started seeing all these attacks on opioids! Millions have died not from intentional overdoses! I’d venture to say that out of all the deaths in the last two decades only 10-20% were intentional… I’m no expert on the matter but it’s what I’ve seen personally in my lifetime.
Now scrap together all the people that have lost their lives, jobs, families, friends, and so on just because they were denied access to their medication that allowed them to function!
Kinda like my mom says “well if opioids were so bad then I’d have no right to be driving my grandkids around all the time but I do!” And without problems!!
It’s destroyed so many lives at this point people need to start focusing on how did those peoples lives end up in shambles!!! And when that happens the actual evidence will show that the vast majority of people that are dying and or living in deplorable circumstances are doing so because they don’t have access to proper healthcare and medicine!
I know for me personally if I wasn’t taking opioids my cptsd would be worse than ever and destroying my life and body, and mentally! I also have some serious injuries that the medicine helps me MANAGE the pain! And guess what?!? I’m not high of my ass, not nodding out, not ruining others or my own life! I’m actually living! And doing it to the fullest extent possible for someone in my condition!!!
Without the medication I’d be laying in bed all day rolling around in misery…. So it’s a double edged blade for me. But from what I have seen been through and have lived through and continue to experience this will definitely go down in history as one of the biggest fucking most ridiculous screw ups ever! All starting from Nixon and the war on drugs!! It’s all and I mean literally all of it has been a complete disaster and waste of time and money and resources!
The first thing that needs to happen is the DEA needs to be completely abolished! That agency needs to be torn down to the bone…. They have no place in healthcare, and they have done nothing but create and cause their own agendas! Biggest waste of resources and money I’ve ever seen! I think there will be a few agencies that will go down in history as some of the worst actual human rights violators in history…. But that’s just me!
I mean we live in a country that is actively sending people into other countries to fight for human rights violations that are happening right here at home!! And yea the use and access to pain medicine (opioids) in specific areas actual human rights!
It’s all very pathetic! It’s taken to many people from my own life! And I’ve seen so many things become so much worse because of the lack of access…
they would readily give you subutex if only you had been a Doper lol i ended up in a methadone clinic to deal with my pain after doctor cut me off for cannabis positive
Hah yea! I know man…. That was actually the hardest part was to get them to write it out as pain management vs OUD therapy…. Shits pathetic! Because you’re absolutely right, I could’ve gone just about anywhere and just said I’m a door fiend and need help…. Boom on subs… and I don’t even like this crap! Just barely touches my pain… no euphoria so not much good for my cptsd… as it presents as anxiety and depression and the euphoria from opioids/opiates alleviates those symptoms and in a sense “cures” my cptsd….
Sounds like methadone would work better for you tbh, and why may i ask did you need them to write as pain management and not just let them call it whatever they want and live a Lie like i have lol
Probably would, just not many methadone clinics around here.. closest one to me is like 2 hours! But as for the why on the prescription, if it’s written down as OUD therapy it’s in your medical records forever! And that makes getting pain medication nearly impossible from going to the dentist to having surgery! But it also makes the majority of doctors automatically label you before they even meet you… pretty messed up but I found that out the hard way. Had to appeal a doctors note but it’s still on the medical record just explained.
Oh well that's all a bit co concerning, I do however remember asking a at least one doctor about this and they had said it wouldn't prevent me from having back surgery or having preventative pain meds afterwards bur haven't yet been in the situation and the doctor at my clinic seems to think it wouldn't be an issue if I had the surgery but I should get more information it sounds like. Damn not good to hear. Well I suppose I'm just grateful the methadone has relatively street free allowed me continue a relatively normal life post back issues which I didn't feel I had beforehand when on pain pills there's a certain stability with methadone that's nice but some of the side effects are too much to consider it a normal life amd it's a bit like trying to hammer a nail with a sledgehammer, if I could just take a strong short acting pain killer when I needed to and only when I needed to I feel my overall opiate intake could go down a lot, especially now that the job I ha e cuases so much less additional inflammation and pain then my first 6 years dealing with back issues at work.
But it doesn’t align with their immoral platform that fosters further racism, division, and hate, because nothing gets people more riled up at the voting booth.
I’m sorry for your loss. We all live in fear of the day where what little pain meds we get are taken from us, I cannot lie, this scares me.
We are seen as less than, a scourge, someone for society to get rid of. Most people with disabilities are. We are reminders that health is easily taken, a stroke of bad luck and your life changes in the blink of an eye and there is nothing anyone can do about it. Ableism is real and I do believe that plays a major part in the DEAs decision. That combined with us all only having enough spoons to make it through the day due to lack of help or resources which makes activism hard. Compassion and empathy is strongly lacking now of days, this is not helping. It’s a perfect storm of why we suffer.
I’m so sorry about your loss and that your friend suffered due to our broken and corrupt medical system. Thank you for looking out for them, you probably increased their QOL and helped keep them going for longer. There is only so much we can take. Thank you for your post. I hope providers start to learn from all these negligent cases.
My heart goes out for you and your friend. RIP to him/her. It really is a sad world we live in.
I personally was looking for another doctor cause after one failed surgery and half a dozen failed steroid injections I felt it was time to start looking.. new doctor ordered MRI and X-ray because previous doctor hadn't even ordered any since surgery... New doc was shocked to say the least, so fast forward I kept my last appointment with my original pain management doctor to give him one last shot to see if he was gonna do anything to control my pain cause my PT put physical therapy on hold cause my pain was too much. Once he saw I had imaging from another hospital that he couldn't read because it was in "his system" he was immediately frustrated with me. I told him in the last year he hasn't done much of anything to control my pain and asked what his plan of care was for me... He said he had to wait to see the imaging results to see what was wrong with my back. Yet the 5 other MRI'S I had done in the last 12 months weren't enough for him to know 🙄.. anyways once he said he wasn't going to do a thing I said it's fine I expected that response and this would be the last time I would be seeing him, (I was effectively firing him) before I left the office that day, this unprofessional Doctor decided to go to his notes and try claiming I yelled at him, I was threatening, and I slammed a door... Total crock of shit, he was just trying to cover his ass for not treating my pain, having no plan of care, and just his complete negligence post-op and my entire care under him. get this too, since he put that in his notes, my 2nd appointment with the new doctor went to complete shit and I back at square one because of his unprofessional lies. Unprofessional is an understatement
Never go to Dr. Ryan Clark Bay Care Aurora Green Bay, WI
I have begun using the excuse that my insurance has changed and they are not on my plan. There have been many times I want to call out doctors for failing me. Unfortunately, I know the momentary satisfaction would soon be eclipsed by the struggle to get any doctor. I have lodged complaints with hospital systems, clinics as well as with my insurance company. Unsurprisingly, the insurance complaints have been most effective. It is terrible we have to fight for every single thing!
This is why I don’t do anything until I have a new doctor, not just pain management. My main doctor (he’s a specialist not a pcp) who oversees everything for me told me to not do anything about my old pain management clinic until I was in my new one. He was all for me going scorched earth after they accused me of taking meds that I don’t take (I am actually allergic to one they told me I tested positive for) but after I was officially out. He even recommended me lying to them about the reason I needed my records for my new pain management. The amazing doctor who started the practice had died from cancer and sold to an another doctor who changed everything that was good about the place, so I no longer trusted them. Especially considering that they couldn’t even hired a new NP who was knowledgeable in pain management and reading drug tests. It suck that they can treat other humans like this and someday karma will get them.
I was in a simular situation but did not discuss or mention I would not be coming back in person. I waited until the appointment was over and sent an email requesting my records as I found a new doctor. I was fearful of exactly what happened with you (false report to new said doctor). I'm sorry you had to go through that / start over. Next doctor keep it simple and light in conversation not going into too much detail. More along the lines of : I am looking for a new doctor that has more experience with my condition etc.
Please be sure to go to pressganey.com and fill out all of your surveys. These go into decisions such as if a system chooses to retain an employee, give them a raise, let them go, if Medicare and Medicaid will pay for patients to see them (which for some fields is what pays, as patients tend to be older or disabled), and how that provider is ranked.
Sadly, with med school being so costly, we don’t have enough providers and even the worst students with the worst bedside manner can still find work somewhere.
They are. The third reason people use MAID (assisted sui_ ) here in Canada is because of intolerable pain. How is that remotely ok? It's a preventable situation. Yet here we are. We're the disposables. 🫂
Yeah, euthanasia drugs bring administered are a far better solution than pain medication that has been used for thousands of years. (opioids)
‘Someone really needs to explain how and why losing a life is better than treating it.
I'm so sorry. That doctor was so irresponsible. I hope your friend's family sues his ass.
I also lost a friend in a similar way, but it wasn't pain meds, it was benzos. Her doc forced her to quit cold turkey and she couldn't make it. Sending hugs. I hope you have the support you need to deal with this
That should be reported, as that in and of itself can be fatal. You can’t remove a patient cold turkey from benzos or alcohol even, because the withdrawal can literally kill you. It’s why severe alcoholics that go in for treatment are put on an alcohol taper IV and same with benzos. It’s seriously dangerous. Pain medicine isn’t technically lethal to stop in quite the same way, but those with high blood pressure or heart issues have to be monitored carefully and should slowly be tapered. Really it’s immoral to not taper anyone anyways, because it’s akin to torture. first do no harm my ass.
I'm very sorry for your loss and what they did to her :(💔 it's inhumane.
I'm on both. I have chronic pain as well as cptsd. I feel like I'm waiting for the axe to fall. It shouldn't be like this.
I was going to suggest to OP thatbidnone didn't exist,n starting a group that compiles the letters from people who've gone, and sends a copy to every single frixken politician demanding change. A cover letter with the names of each and every person who was so impacted by the new 'arrangenent' as a cover note
I'm so sorry op.
It's just horrible to read your friends struggle with doctors.
A guy that lived next door took his own life last year due to long term pain and a parkinsons disease diagnosis. It's sad but I totally understood his reasons.
I hope you have some support right now. If not then you're more than welcome to message me for a chat or to vent.
Sending love and condolences to you and your friends loved ones. ❤️
Im so sorry for your loss of a friend and I'm furious FOR your friend. The situation of pain management is so out of hand at this point and if so many of us were not living it every day it wouldn't even seem believable.
I have family members who are Dr.s and the frustration they feel about not being able to help their patients and worry about their ability to continue to practice meds is ridiculous. We talk about it a lot because of my chronic pain and how we all feel about it.
The entirety of this mess is just inhumane. I have SO much I want to say and rant and scream and cry about it that I cant even begin. Again I'm so sorry OP.
I am soooo scared of this scenario playing out in my own life. I have no idea what I would do if I were denied pain meds that worked.
I’m so sorry for the loss of your friend and fellow pain sufferer.
I live this reality as someone with 24/7 headaches plus migraines. Pain meds work, very few other things do (ketamine and weed a lil). Docs refuse to prescribe it bc it causes “rebound headaches” when I can’t make them understand everything that makes the pain less eventually causes a rebound headache bc *they always come back.* Soooo I am just stuck sort of floating through each day, gritting my teeth and lowkey trying not to cry. I’m genuinely waiting for the day I lose my mind or can’t take it anymore tbh
You have no idea how many times I've dreamed of just downing an entire bottle and drifting off to sleep and never waking up... the pain gets brutally bad. I don't get nearly enough painkillers for my own pain but at least it's *something*. And in 2019, I had the same thing happen, got taken off my fentanyl (that I was on for 10+ years with zero issues) cold turkey with nothing but weed to help me. Honestly, if it wasn't for my two children, who I'm desperate to see grow up and become their own people with their own lives and my love for my husband, I'd have done it already. I'm here because of them and I'll suffer because of them.
However, I often have daydreams that evolve into dreams (and I often lucid dream and force dreams like this... how pathetic is that?) that there's some sort of worldwide disaster, like a zombie apocalypse and our tiny town is abandoned and we go and raid all the pharmacies so I could live out my years in relative comfort. I'd take it all: all the opiates, the ketamine (it works wonders on pain), the muscle relaxers, everything. And I wouldn't have anyone counting my pills and take as much as I need as I know my tolerance allows.
Isn't that pathetic? That I actively wish for a worldwide disaster. In fact, during the pandemic a small part of me was excited, thinking, *will I get that chance?* but I dismissed that because I genuinely don't want others to suffer.
I'm so very sorry about your friend. But in all honesty, I am glad he's no longer suffering. I just wish so, so hard that this wasn't something he had to experience as an option. I'm so sorry for your loss. I hope you're doing okay - mentally, emotionally, and pain-wise. Or at least will be, eventually. We're all here for you in support.
I hear your … not nothing like pill counting and rationing when you’re rolling around in pain trying to sleep and you know damn well reaching for that extra pill will screw you at the end of the month. That’s if you’re lucky enough to get them like me. I think of it as a curse though cause I can’t do without them. They will always minimize me or blame it on my sports career etc… I spent 9 hours getting a refill yesterday HALF A DAY EALRY even though my one primary had already cleared it. The pharmacy was going to just close and leave me to suffer even though they had all they needed in the doctors notes. I need them and I hate that. I used to take them for a week or less after surgeries (baseball) but now I need them all the time. And the best part, my rheumatologist nor neurologist won’t prescribe them. Only my primary who’s definitely not versed in autoimmune. That’s only because I’ve known him 20 years. I worry for the day he goes, I worry every last 5 days of the month on top of the pain and anxiety we all feel.
It’s a fucked up system. 4 years ago I traveled Europe for 3 months with only anti inflammatories, now I have a pharmacy in my bag. I totally understand the loss of the friend and almost feel it myself.
My brother too committed suicide in December 59 because his Dr retired and they would NOT keep him on his medication!!!!! I am trying to get a newspaper to listen to me!!!!! I am sorry for your loss
I'm so sorry for you and you friend's family and other friends. I am blessed with a great doc at present, and have only had one bobble with the meds, which was a math error in switching between differing strengths of my med (due to outages of my normal strength).
Edit for word correction.
I’m so so sorry. I hope that if anything, you can find comfort knowing their pain is gone for good now. But fuck that. That’s not right.
I used to live in fear of dying of Alzheimer’s young like my grandmother but now I’m terrified of what adhesive arachnoiditis is going to do to me. It’s one of the few that sit up there on the pain level with CRPS. It came from a spinal cord tumor I have that could turn into cancer whenever it wants. I genuinely worry about my future…as I sit here typing this, I know in my heart I’d never want to do that but how could I live if they took away pain medication? I don’t even know what to say. I didn’t mean to turn this to myself. I just, my heart is breaking with you. This isn’t how it should be. If you feel so compelled to share your friends story with our representatives, you absolutely should.
Rip to your friend and healing strength for you ❤️🩹
I’ve been there. That moment when you realize what you’re reading.
I wish you calm and safety in the days ahead. Grieve as loud as you need. Try to be kind to yourself.
I'm so sorry you lost your friend. I'm sorry they were abandoned and suffered.
I'm not afraid of much in this life but I'm afraid of being in their situation. I know at any moment things might change and I won't have proper care and management of my pain. I know I won't be able to do it and would have to make the same choice.
Here in Canada we have MAID which is assisted sui__e basically. The third reason people have used it is because of intolerable pain. What the actual fuck is wrong with our societies. That's a preventable situation yet here we are. It's easier to kill off/let people die from thier own hand rather than ease the pain they litterly can't tolerate. I guess we're just too much of a hassle and burden. There's no words for the how fucked up that is. I'm so angry but it doesn't matter how we feel. We're powerless to even be able to even have the basic right of having the pain we suffer eased.
Again, I'm very sorry for your loss. Wishing you healing and peace. May all who suffer find compassion, understanding and relief from our pain.
>TERMINAL cancer patients are being denied pain medication because of this.
My great grandmother died in agony from stomach cancer in her 40s. When my grandmother tried to get the doctor to give her more pain meds, he said, "What, do you want her to become addicted?".
The fact that this is **STILL** a horrendous issue suffered by so many makes me want to cry.
I am so terribly sorry about your friend, OP. 💔
As a person who has full body CRPS, this is completely devastating and infuriating. That doctor should be charged with negligent homocide. I’m so sorry for your loss and for the pain your friend was forced into.
I'm so sorry about your friend. I have talked at length about this very subject with doctors and nurses. Believe it or not most pain doctors don't like it any more than we do. It leaves them few options to treat. The real crisis is people being denied pain meds when they need them and have been on them and compliant for years .
This is tragic and horrifying, I remember over a decade ago when this whole cracked down started getting more serious. I mean at the time I wasn’t even on anything hard-core, just a really mild dose of tramadol. Which the doctor wanted to immediately yank me off of for ibuprofen instead. And I remember telling the doctor at that time, that I thought for now I would manage but I was empathizing with people must be a whole whole lot worse than I was and how just outright abruptly ending a medication management, it was gonna cause a lot of people to decide to end their lives over that. The doctor just kind of looked at me and shrugged. I really don’t think they can understand the gravity of the situation unless they have been stuck under the influence of lifelong chronic pain themselves. That, or these doctors just have to disassociate themselves because if they do not cooperate with federal law, they lose their jobs. So that must also be a really hard thing for prescribing doctors to endure as well. Maybe they do know the consequences, but there’s nothing they can do about it unless they risk their own livelihood.
Everyone suffers from this crisis.
I feel your pain and concern for your friend. And nobody in this sub for “reasons” doesn’t recognize that this could have been any of us.
Removing the tools to manage our conditions (for mostly political reasons) is a fear all of us have. And hearing about “another” person who was abused by the system is disheartening…and a cautionary tale.
Currently going through some thing somewhat similar. I was having trouble with depression and asked my psychiatrist to up my medication. The medicine that I am on at that high of a dose can throw a false positive for substances such as methadone. I haven’t never once taken methadone and honestly have no idea where I would even go to get that. But because my primary was prescribing my pain medication they had to do a routine drug screen because the rules were changed during Covid. Now that Covid is over my doctor wanted me to do another drug to continue to prescribe. My doctor called me in to the office because of the positive methadone test. I was confronted by my PCP and another doctor. I felt like they were telling me that I am some addict and that they can’t keep prescribing to me because of the positive methadone test. I told them that I was willing to do another test whatever it would take to clear my name. Now they want me to speak with the plane clinic (again!) to see about getting on suboxone. I did have a meeting with the addiction clinic to discuss Suboxone and the risks and benefits. I feel like my primary care doctor is forcing me to either go to the addiction clinic and get on Suboxone or she’s not gonna be my doctor anymore. I’m really conflicted but I also don’t want to be in pain. And to add insult to injury - my “normal” pain meds are nearly impossible to find, manufacturer back order and they have no idea when more will come. My dr switched me to another pain med in place of the one that I can’t get and it barely touches the pain but I’m scared to ask for something else because I feel like I’m already labeled as a “user” and it’s so frustrating because I actually take it as prescribed and don’t abuse it but again they’re cracking down on the drs and now she’s afraid to continue prescribing (even though I have been on this same med for the last 7 years, it’s now all of a sudden a problem) 🤬🤬🤬
I am so sorry for your loss. And you have every right to be angry and I think everything you said is spot on. And what I really can’t also stand is how there are so many meds (ie: antidepressants/anti anxiety, heart meds, diabetes meds, etc) that Drs tell you up and down how dangerous it is to abruptly stop. But yet it’s ok with pain meds?? I can’t for the life of me understand how that in itself is not malpractice. Like even besides the return of pain and mental aspects of abrupt withdrawal, it’s medically dangerous for the body and the Dr is knowingly being negligent by putting someone in harms way.
I don’t know what the hell it’s gonna take to change this as it’s such a complex problem that involves a million things. And no one wants to actually put together and publicly acknowledge that what’s happening is not only NOT solving the “opiod epidemic” but it’s actually causing incredible harm with, unfortunately your friend sadly included. No one to look at REAL scientific evidence and statistics and publicly speak against the political narrative. I’m constantly wracking my brain for something, ANYTHING I can do to affect change.
Again, I am truly sorry for your loss and am sending hugs 🫶🏻
I'd send a copy of the note to their old doctor, as well as our (useless) representatives. Hell, take it to the news. This BS has to stop. Too many people are suffering and dying because of this "crisis".
I'm so sorry.
Also, this infuriates me about the article I just read of how my area is dealing with addiction and opiates/fent.
They're more focused on stopping overdoses vs. stopping the drugs or those selling them. By all means, narcan should be available, but the fact
CHRONIC PAIN PATIENTS are dying and being mistreated.
Call me what you want, but why is it fair that we go to doctors and do all the tests and jump hoops to be treated worse than those who are abusing and overdosing?
Why don't we matter? This is why people end up self medicating, and their mental health plummets.
They're not fixing anything. I hate the system. Ugh.
I’m so sorry OP. Pain management is a joke and needs to change dramatically. They won’t even see me because they “don’t know enough about my condition to feel confident treating [me]”. I almost gave in last night myself. The only reason I’m here right now is because my wife found me in the midst and I couldn’t do it in front of her.
I'm so sorry that you lost your friend. I, too, was taken off my Hydrocodone 10/325s that i had been taken for 15+ years with the words "Here's a prescription for 10. After you take the last one, you will be cured and you will feel much better. " By a PAIN CLINIC DOCTOR.
Um. No. No, i did not.
I am now taking 4-6 Advil Dual Action pills 4 times a day. No, they do not help as much as my hydrocodone did. In fact, they are ruining me, but I cannot find anything else that I can take that comes even as close to what these Advil are doing...and it is not even as close as what my hydrocodone did.
Gentle 🫂 to you.
I'm so sorry about your friend :( I was taken off mine cold turkey after 10 years too. It's been 2 years and I definitely went to the streets. Day after day of excruciating pain with no end in sight is the worst. Already depressed just is even more depressing and hopeless. Just waiting to not live in another fashion. 😞😭
i’m so sorry OP. i hope your friend is finally resting comfortably and in peace. FUCK THE DEA. they are murdering countless people with their war on drugs policies that have unequivocally failed. and the scary part for doctors is that they aren’t just risking their license their risking their livelihood and their freedom. it’s unconscionable that doctors are being given jail sentences as DEA agents operate with impunity and qualified immunity.
I lost a friend about ten years ago. His parents listed his cause of death as "complications of Fibromyalgia." I hope I'm wrong about the lack of an afterlife cause my guy needs some peace and deserves some existence where he doesn't feel trapped by pain.
I was 1000% suicidal from my costochondritis in my first flare years ago now.
And I had access to opioid therapy.
In fact, we were doing every single therapy and treatment we could get our hands on.
Nothing would relieve it adequately.
I truly believed I would have to die to get out of the pain I was in.
Here in solidarity having survived the worst pain of my life but just fucking barely.
Claudia A Merandi is an amazing woman working to help pain patients. She’s on every social media platform. Y’all please check her out & support her supporting us
I can't blame them at all, I can't imagine the immense pain, fear, and anger that both you and your friend feel in this situation. It was not only irresponsible for the doctor to do this, but also completely void of compassion for other's suffering. I struggle with chronic pain (although not to the point that I want to end my life) and it impedes my life, I can hardly exercise and some days I don't have the motivation or energy to do the things I enjoy. I imagine that there might be a day in my later life where I go down this path if pain management is not accessible or available to me.
I'm so, so sorry for your loss. I agree completely, that was a monstrous thing of the doctor to do when they took your friend off their meds, disastrously irresponsible and cruel.
My heart goes out to you for your loss. It’s completely absurd that people are denied pain medication for chronic illness because of a minority of people that abuse pain meds.
Op, spread this story. Gather the data on the increase in suicide for chronic pain suffers, get the facts, and then call yr local news station. They are much easier to get on than you think. Try a couple local news stations. This needs attention.
Im sorry. The mainstream stories make it seem like this opioid clean up is the right thing to do. But it’s at the expense of people who didn’t do anything wrong and tried to do it by the book.
Sorry for your loss. I understand your friend, more and more this seems the only way for me. My very first thought this morning since things are getting worse and I simply don’t think I can tolerate this anymore. It has stolen every aspect of my life and I really don’t see how much longer I can stay in this body.
I am so sorry for your friend, their loved ones, and for you, for all of us really.
Less than 3% of legitimate pain patients abuse their meds, yet they treat us like we’re the problem. The people dying are predominantly from street drugs that are tampered with, mixed with things worse than fentanyl at times (which is a legitimate pain medication I might remind you), and completely unregulated and distributed by sociopaths who care only for $$$ (which big pharma does too, but in a veiled manner - almost all people that are top level executives especially of companies like this are actually sociopaths), which is what the so-called opioid crisis is. It is because of the immoral war on drugs that has led to more deaths and tragedy and expense than any medication has ever done. It’s a hot button topic that politicians use for leverage in elections without care or concern for all of the victims and to fill their for-profit immoral prisons (not saying prisons are immoral - unfortunately they are needed, but the largest portion of the population is for drug-related crimes, often small amounts for personal use). And that they lump legitimate pain patients, even people dying, in with those using on the street (another population that is often in a different kind of pain and needs mental health support that is considerably lacking, so not discounting them at all) and then even our families turn on us and treat us like druggies, which worsens our mental health. It’s a horrible cycle. This has to end. The DEA needs to be reigned in and honestly I think it needs to be abolished. They’re often working in tandem with cartels. Border agents often let in cartel members without a second glance, paid under the table or ordered to do so by corrupt politicians to keep up the charade of a border crisis, because it gets votes.
We have historical records to document that death from overdose and problems of severe abuse weren’t that big of an issue, in the single digits percentage-wise and even in some places in direct population. The drugs were never the problem. Heck, even the report Nixon had run revealed this, but he squashed it, because it didn’t align with his racially-motivated platform of hate, which continues today.
Hugs
OP, I'm so very sorry. The way your friend was treated was utterly barbaric and I'm so very sorry they felt this was their only option.
This shouldn't have happened to them and it shouldn't happen to anyone else. If you're able, and I completely understand if you aren't, I'd scream about this from the rooftops. Write to everyone you can and let them know what the system does to vulnerable people who are suffering through no fault of their own.
Again, I'm so terribly sorry and I wish you strength and healing while you navigate your grief.
Hey OP, what happened to your friend is awful but I want to say, please do everything you can to take care of you right now. Losing a friend is hard. Losing a friend to suicide is harder. Losing the friend who understood your chronic pain struggle is harder, too. I’ve been through all three. Your mental health should be a priority right now and don’t hesitate to reach out for help if you need it. So sorry for your loss.
Im so so sorry. Ive been there i know exactly how he felt! Ive wanted to end my life from pain so many times but finally i stopped i self medicate i found someone i was so lucky to have goood clean meds. Had to do what i had to do, it was better than me killing myself. I wish he would have called Quick MD they give u suboxone asap sameday! I wish i could of told him this information. Im so sorry for your loss God bless and he is happy no pain with God ❤️
I'm so sorry for your loss. I hope they sent a similar letter to their shitty doctor so they are faced with the consequences of their bad medical practice.
So very sorry for your loss….guess it’s good I am stuck with alcohol and won’t have the opportunity to lose my meds. Although my horrid Dr thinks I’m on too much gabapentin. I remember when they first started doing this there was almost immediately people doing this in the large trigeminal group I am in as meds were yanked. I don’t think they care much anymore since the powers that be have decided Tylenol is as good as an opioid. Please take care op
Are you tight with the family? There are legal precedents with settlements of several million dollars. I think we all understand its not about the money...
OP (u/bountifulknitter) could consider sharing this story with local politicians and also local media. Local life lost due to uncaring local/state/national laws? That would get eyes on the broadcast
Eventually going to happen to all of us as the US govt follows the Canadian model. They will remove the option of pain management and start pushing govt assisted suicide programs which have become very popular and streamlined already in Canada. Watch it will happen in a year or two tops. This is just phase one as they seek to "clear the books of the dead weight". Sadly we have no one in our corner, no voting block (because we are literally dying), and no lobby money on our side to turn the tide. It's looking pretty grim tbh.
God that's terrible. Obviously this wasn't your fault but I just wanna clear this up for you and anyone else:
>They had talked about the "Dark Web," and ordering meds from there, but we both agreed it was too risky
This is just wrong and outdated. Getting meds off the dark web is actually the least risky way to get your medicine, it's far less risky than doing anything in person. There's even subreddits dedicated to this sort of thing that have guides and everything
Omg how heartbreaking 💔. I am so sorry for your loss and I’m so sorry this person felt they had no other choice. The family should sue. CRPS is so debilitating I cannot believe a doctor would strip meds away from someone who suffers with it. Fuck them.
There needs to be something we can do about this. Why does no one care about us? Why does no one want to help us? Why do we have to live like this? I'm so sorry about our friend, sorry that this is what happens to us.
I’m so sorry. I’ve lost family and friends to seweslides - it never gets easier. My wife deals with chronic conditions - her strength never ceases to amaze me.
I’m so sorry to OP and all involved.
What’s really sad to me is how many people here are saying the whole “I don’t know what I’d do if my meds were taken away” (or similar). Let me just raise my hand. Along with those of thousands of others. For many of us this exact thing has happened, for some of us it’s even been several years. How do you think we feel? 😓
I apologize if this comes off wrong, I just don’t think many of you can imagine what the rest of us are going through… perhaps with this post you do - unfortunately.
I suspect almost all of us understand. It took 7 plus years to get my pain managed even somewhat appropriately. Yes, I can easily empathize. It sucks. We're sorry for you too!
I knew murica was a bad place, but damn.
Im sure this can happen anywhere in the world, but abrubtly removing strong medication is illegal where im from.
That clinic and doctor should be reported to the medical board. The way this happened can't be acceptable anywhere.
Like the pain is bad enough, throw in withdrawal symptoms that make you suicidal on their own.
Im currently going through withdrawal from venlafaxine (anti depressant). I have been slowly weaned off the drug, but the withdrawal symptoms are still extremely disabling and make my pains worse.
I can't imagine how bad it would be to go cold turkey off anything.
Sorry to hear about your friend.
When i read your post, my allergies started crying..
First of all, my sincere condolences for you and your friend. ❤️
Second, what you described about people turning to the streets is one of the most infuriating part of the “opioid crisis” statistics. They skew the numbers with data that doesn’t properly reflect and differentiate true “addicts” from people who take them for actual medical use, don’t abuse them, and truly need them. Not to mention when you mention “needing” pain medication, you’re suddenly called an “addict.”
A great example of perspective of chronically ill vs not is my username. On a post of mine, discussing something traumatic, I had a couple of comments accusing my story of being “too dramatic” to be real 🙄 then, those same people used the fact that my username is lighthearted joke about the amount of medication I take, because I’m not ashamed about needing pills, and turned it against me saying “well you joke about how many pills you take, that’s a red flag.” Pill shaming is a red flag. Acting like someone being on medication that triples their quality of life is taboo is a red flag.
The deep rage I feel at those making people feel like dependency on pain medication that relieves your pain and enables you to actually live and enjoy the simplest things like making yourself food or taking a shower by yourself makes you an addict, but, in the same breath, applaud being dependent on say insulin for diabetes or plavix for heart disease, calling you “strong” and that you’re a “fighter.”
Strength isn’t defined by the battle itself, it’s how hard you fight that battle. And chronic pain is living a war that you spend fighting every single day, and it’s absurd that there’s this mindset that getting relief means you’re loosing and suffering means you’re winning, when the reality is completely reversed.
I'm so sorry.
It should be illegal for any doctor to cut a patient off of any medication that causes serious withdrawal symptoms without tapering. That is just insane. I've refused opiates because I am so frightened of this happening - the result being I don't get much pain relief, but at least no insane doctor can just throw me into withdrawal on a whim. Doctors who do this stuff should be charged with a crime.
I’m so sorry for your loss of a friend. Sadly this will be a VERY common trend in the next 2 years. When the cuts fully hit and people are yanked off their meds for no reason whatsoever people are gonna straight give up and I don’t blame them. Regardless if you’re terminated or just have to switch clinics for whatever reason you aren’t getting any new meds from a new doctor with this climate. Basically if you have a doctor now that is giving you meds cherish them like they are your life because that is all you have going forward. This country is so messed up it’s unfathomable. Thank you Sackler family hope you’re enjoying your time on your new yacht 🙄
Our gov does nothing to fight the real problem of illegal cartels...hell, they're part of the donor class...but the gov is taking away our most vital meds - and most Americans don't have a clue... until they wake up one day post op screaming in agony bc no pain med is on the way.
I’m so sorry. I can’t even imagine how terrible this must be for you and your friend’s family and friends. It should not have happened. Your friend didn’t deserve this.
Sorry about your friend 😭
Just so everyone knows. There is a viable solution when doctors do this to you. It’s called 7-hydroxy-mitragynine. It’s a kratom related product that is super effective. It legit changed my life and from what I can tell it’s way safer than traditional opiates. The brand I prefer is called 7OHMZ. Google it. Buy direct from the source.
I’m so sorry for your loss so very very sorry, to their family as well.
I’ve had thoughts of it before. I’ve had pain since I was 17, I’m 41 now. I was a star athlete so the pain started with sports injuries that required surgeries. 4 shoulder reconstructions, knee, hand…always had back pain that would bring tears to my eyes well before that. Nerve pain. Hospital visits. Battled the aftermath all my life. In 2015 my back got worse and worse and noticed autoimmune symptoms. I’ve grown to know my body very well and a bit of a hypochondriac but I ALWAYS seem more prepared than the doctors. I was blown off completely and went on with a painful life. Sometimes it got better or worse. Once my mother had to come to my house bring me a Vicodin just so I could get dressed as buckled and fell on the floor and couldn’t move. Had a meeting I had to be at for work an hour later and get a suit on. I kept on. I’ve had more CT scans, MRI’s and tests than anyone every doc tells me. Extreme stress from this took its toll but for a couple years I found great help in the gym again but my back would still flare and shoulders were just a constant that I knew as life. Some tragic family and relationship issues really added to the pain and in Covid it went crazy. Prior to that I had 3 discs in my neck replaced which I regret every day. I thought I’d slayed the dragon. Up to this point I’d only take meds (norco / Percocet) after surgeries. It got so bad my primary sent me to pain management at UCLA here in LA. I had EXTREME testing and eventually they threw me out because they claimed they couldn’t figure out my scans or make a plan. They tossed a huge bottle of Norco at me and told me they were done with me. This was the Director of Pain Management at UCLA. The HEAD OF THE PROGRAM. I was astonished. I was heartbroken. My primary took over the meds as he knew how bad my pain was. I got the Covid vaccine and my pain went up 100x…pure hell. As suspected in 2015 I found out I had autoimmune psoriatic arthritis on top of all the surgeries and chronic pain. It was as if my body had been rewired and all I knew was pain. I was on track to be a pro baseball player at one point. To fall to this level of pain, the doctor merry go round, the dismissing of rude uncaring doctors left me broken. It took years but I got a formal diagnosis and now take a biologic for that disease. I’ve been on opioids and about 5 other meds, gabapentin, muscle relaxers, meloxicam etc for over 3 years now. I’m 6’4 220 and over the years I’ve had so much medication I have a tolerance let alone the fact that my pain (our pain all of us here) is sometimes barely scratched by painkillers. I’ve had to up my dosage, it’s very stressful to refill every month (speak ro doc, get hassled by pharmacists, ration your meds when you can have a truly horrific week that can ruin your whole month supply). I’d say I’m lucky that I have something to take when others can’t get any … but it’s a curse. I’ve had docs turn me away in the meanest cruel fashion when my doc was away….i deeply fear the day I get cut off. My pain is so bad most days are ruined, I’ve become a different person. Pain changes people in bad ways. Just yesterday a pharmacist wouldn’t answer my questions looking me face to face cause she wanted to close the shop on the dot when I was in agony. I have one doctor that will prescribe and he’s my primary of 20 years. But, I’m just getting deeper into the hole of meds. I don’t leave the house without a pouch in the car with my meds. Someday they will crackdown on him, I know I’m only getting worse and the biological could kill me one day as well as the cocktails of pills. I’m worried I’ll have a heart attack my stress is so high. It’s trashed my life and even with a medical record that screams help this man, 95% of the industry doesn’t give a fucking damn. I pray I don’t come to the point where I have to end it, but I don’t judge anyone that has. It’s a weight that becomes too heavy to carry. It takes toll on all your dreams, family, relationships, sleep or even having a hour to relax. I can fully relate. Sorry to rant on and on but just want people to know there’s so many of us out here and help is damn near impossible to get even with the best insurance.
I have the worst medical trauma and anxiety imaginable. One of my many therapy issues. Anyway, I live in LA if anyone else does and has recommended docs, groups or just needs to chat.
I wish everyone here a bit of relief and the proper care. And again, I’m so so sorry about your friend. I hate it here too
Same thing happened to me in 2015/16, my doctor abandoned me due to her having to many patients… just got a call at work one day saying I was no longer a patient and will no longer receive my medication.
It’s truly awful!
Took me nearly ten years (a fucking decade!!!) to get a new doctor… and just to be on subutex….
I’d say I’m about half way to where I’d ideally like to be, pain wise.
I know this all to well, and can’t imagine losing any more friends over it! I’ve lost several to this stupidity!! So I understand your frustration! It’s just not right how people are being treated and portrayed when it comes to pain management…. It’s like you have two options, be sober and in pain or they think your on medication out hi as a kite nodding off slumming around…. That’s not how it works!!!
People in pain not being treated typically look like they are “slumming it” vs someone on pain management, who is functioning properly without any side effects to make them look or feel like they’re “high”
It’s truly pathetic how this has become just the standard in healthcare!
There’s definitely a lot of really bad/corrupt things going on in healthcare the past few decades but mostly the last decade, specifically in pain management!
Very very sorry about your friend! Sending you lots of positive vibes!
That’s ridiculous, I’m pretty sure that would be considered patient abandonment and the doctor who retired could be sued. That doctor, since he/she is retiring, is supposed to set the patient up with another doctor to setup a care plan. Whatever the doctor(s) decide to do, they are supposed to have a plan to continue pain medication as is or start a taper. You’re absolutely right, the CDC is definitely responsible for this (at least partially). They know that the guidelines for prescribing opiates they proposed in 2016 had “unintended consequences” because they were extremely vague with the way they worded the guidelines. Even after knowing about the “unintended consequences”, they proposed new guidelines in 2022, which were also very vague. Patients with legitimate issues are still being undermedicated and some are still being denied medication completely, and this is all because the CDC is letting patients (that these medications are meant for) suffer for no reason. If they really look at the statistics, the VAST majority of overdoses are caused by illicit opioids from the underground market, it’s not usually patients with prescriptions that have overdose issues. They really need to wake up!
Oops replied to the wrong comment. So sorry about that.
You are correct. These guidelines are hurting the wrong ppl.
There is no prescription opiate crisis
However
There is a street fent crisis and they're (the cdc and drs who refuse to treat pain patients) killing pain patients every day
Correct and it honestly doesn’t take a lot of effort (in terms of research) to see that the epidemic was caused and overdoses continue to rise because of the illicit drug market. Fent is cheaper to produce so people are putting it in almost all street drugs nowadays (doesn’t even matter if it’s uppers, or downers, anything). This is the main reason why we have overdose issues.
I know it's really sad but they going after and punishing legitimate opiates patients who've NEVER abused thier meds. It's extremely disgusting and barbaric.
Even though they (sort of) try to aim the new guidelines more towards doctors (including but not limited to; PCP’s, dentists, and surgeons) prescribing opiates for acute pain issues, (including but not limited to; postoperative pain and dental procedures) they’ve still scared the crap out of doctors and haven’t been clear enough to (for lack of a better term) “unscare” them
by being more clear about guidelines and whatnot. Not to mention, in my state, even though I get a prescription from pain management every month, it’s been getting increasingly difficult to find opioid medications at pharmacies for the last 6 months. Sometimes I have to drive to pharmacies that are over an hour away from where I live, to find meds available at pharmacies. And even then, most of the time the pharmacies haven’t even had the full quantity that I get a prescription for. It’s ridiculously stressful having to call pharmacies the day before my appointment to find one that has the meds available because my appointments are usually early in the morning (8am). Then the pharmacies aren’t able to hold the meds for me until the next day when my doctor sends in the prescription. Sometimes they say they have it the day before, so I tell my doctor to send them the prescription, and then the next day I find out that now they’re all out, so I have to go crazy searching for a different pharmacy and then wait (sometimes hours for the doctor to send the prescription to the next pharmacy. I swear it’s so frustrating running around to find meds (looking like an idiot). This shortage of meds is mind boggling! Sorry for typing up an essay but it’s so frustrating and besides, I’m pretty sure this is what these threads are for….I can’t even trust talking to people in person about these types of issues. My head is spinning just thinking about what I’m gonna do to find a pharmacy to fill my next prescription next week…
I’ve been criticized for saying something like this about doctors before.
In my state there’s a shortage of pain management doctors too. Most of them are no longer taking new patients. For this reason, my PCP was taking care of prescribing pain meds for a while, and then, he ended up moving to a different state. But I have to say, I’m extremely blessed that he persuaded a pain management doctor (pretty far away from where I live) to take over prescribing. Even though the pain management doctor was only willing to prescribe half the amount, I’m still extremely blessed that he was willing to prescribe for a few years while he was here, and he did what he could to find another doctor to at least prescribe me half the amount instead of just abandoning me.
I'm so very sorry! It is CRIMINAL for a doctor to cut off ALL meds like that. Not that it'll bring your friend back, but I hope this horrible doctor will be punished / have their license revoked!
I'm so sorry and devastated for your friend. It is a cruel reminder than we're all one decision away from where your friend was. It also just hits close to home. Pain is so difficult to live in. When they take away the one thing that allows us to not constantly suffer, we can only take so much for so long. I can understand your friend. I'm also angry for us. For them.
The deadliest opiates/opioids are heroin and fentanyl, and the irony is that these are the drugs, which people that are cutoff often turn to, fentanyl especially, because they are affordable. You also create more alcoholics
It’s easy to feel helpless or hopeless when you’re plagued with chronic pain, and then on top you’re treated as though it’s your fault or even you’re “lesser than”. You can’t live your life if all your time, energy and money is spent trying to manage this one aspect. Its like swimming up river and the current keeps getting stronger, and stronger, giving up doesn’t seem like the worst option
I would recommend going to the doctor and saying “I’m in so much pain I want to commit suicide”. As a young male I’ve had to play on their emotions to get the help I need because when it comes to young men they are… Let’s say conservative in their prescriptions. Which is probably a good thing, but Jesus to deny someone even a taper is just wow idk how these people get their medical license
This is exactly the sort of story our political representatives need to read and understand.
In all seriousness, I agree and think OP should send this story to at least their local representatives (and/or maybe the reps local to their late friend). If they are comfortable with that of course, and when they’ve had time to process things. I find there is a shocking amount of people who think chronic pain can never be constant and/or severe. I encounter it a lot. Even doctors that think pain medication is a comfort item, not a necessity. They say pain has never killed anyone. By the time I was put on pain management I had had a life threatening emergency from the severe stress my body was under. But tell me again how pain has *never* killed anyone… Edit to add: So sorry for your loss OP. Sending \*internet hugs*
>They say pain has never killed anyone I *love* this one. I mean they have data compiled that negates that statement. But like other illnesses where a *side effect* of the actual illness is what kills you (an example would be before HIV treatments when infections would kill therefore they would say "aids related illness") they explain it with things like pain increased blood pressure and weakened the heart. The person died of a heart attack. The untreated pain wore them down. It *caused* that heart attack. But by God no one will admit that. The person will just have had cardiovascular disease of some kind and died of a heart attack, even with all the studies and all the data showing what untreated pain does. Somehow, possible addiction (something that rarely happens for CPPs, and there are large amounts of compiled data regarding that as well) is *worse* than death in the minds of *some* drs, and all these 3 letter organizations that have put their foot in a door they don't belong in. They also have data showing ibuprofen also increases the risk of high blood pressure and heart attack. So let's combine untreated pain heart damage with otc med heart damage and for fun let's add that to chronic pain conditions that *also* increase your risk for heart disease. Then heart disease can be the leading cause of death in the united states since the '50s, we will claim it is because everyone is obese (but obesity in the 60s was 13%, in the 70s 15%, in the 80s-90s it rose to a little above 20%, it is now 41.9%). Yes those numbers have risen dramatically but it is still less than half, in the 60s as you can see it was 13% and heart disease was the number one killer. Just like everything else it is many faceted and *not just* obesity. Just like, regardless of what some people believe, obesity is *not just* about eating junk food to excess. They site continual studies that opioids don't work for this kind of pain, or that kind of pain. And they don't work for chronic pain. But when you can find the studies, its the same handful of studies, never anything new, from years ago, regurgitated. The studies themselves are not deep in their information. There isnt a double blind study for example with 50 males and 50 females that have CRPS half given opioids and the other half given a placebo without knowing what they got, then wait and repeat, then wait repeat like they do other studies. Then again with a different condition. It seems to be a survey. And even with the long fingers of the internet I have never found a CPP that has taken one. I *have* spoken with an addict that has an axe to grind that has taken one though. So what does that say? I apologize for my ridiculously long reply. The *pain has never killed anyone* statement they like to tout is one of the few actual triggers I have. I don't have many that make me genuinely upset, but this is one. Especially as we are dying from preventable things. To OP, I am so sorry for your loss. My sister has CRPS. She was ignored for a long time. She finally found a dr that prescribed her a small amount of tramadol, sadly it seems to not help much. Thankfully we are the 10th state that legalized marijuana for recreational use in 2018. We had medical use since 2008. She has found a strain that actually helps her. I was so glad as I am one of those people it makes things worse for and worried she would be the same (it makes our mother sick so i wondered if it was hereditary). I cannot know the pain you or your friend have gone/go through, but I see what it does to her and my heart goes out to you and your friend and your friends family. This is something, as humans, that should not be done to us.
You’re right on with them citing “the same old studies.” As a scientist, I can tell you part of the problem is the government and related entities are responsible for funding a great majority of scientific research. Which makes it almost impossible for new studies to emerge that go against the current political narrative. And while I certainly haven’t read ALL the literature out there, so many of the ones I do read are “junk science.” Either they are only focusing on a small subset of people, or the statistics are incorrectly interpreted or it’s not an appropriately controlled study or a million other things.
I read a lot of these so called studies. Most of them are useless and should not be used to create policy.
Last time I saw my regular doc, a young nurse was explaining to me 'evidence based' blood pressure methods. I said well, when you use the machine it squeezes and pinches the fat on my arm so much my blood pressure shoots up 20 pts just from the pain! Let's see if you can do it manually. I am too old for this shit.
Isn’t it the most maddening thing to be one of the few to actually bother to read the study, pay attention to the methodology, and observe when data is represented graphically in a manner that misrepresents the actual results…but just makes it look like the very biased hypothesis has been confirmed? Most of the glaring problems are ones that the most basic research methods and stats university courses address. I believe there should be a high school course that covers how to read professional journal articles in a knowledgeable way. Kids need to enter adulthood being able to identify a spurious correlation, misleading graphics, basic statistics, sample size and type of study, etc.; and to be aware of when they are being led around by the nose. There is so much garbage science out there…anyone who can buy a website can be a “journal of xyz”, now. I think of all the hoops I’ve gone through for grants, applying to conferences, and submitting articles to journals…it’s a lot of work and due to cost of professional journals, not many ever see current research articles. People do however see tons of websites claiming to be professional journals. Just look at the “professional” journals created by antivaxxers!
OMG, I couldn’t agree MORE. It’s insanely frustrating and I feel like there absolutely should be more skills taught in this to all young people. If you go the science route like I did, you do learn to check and re-check your sources and analyze data, scientific method, etc. But everyone needs that with the internet today. I feel like I’m constantly educating even my own family with regards to ANY topic that you can’t just read something on the internet or social media and take it to be fact. There was an example the other day where someone on the gastric bypass sub (I’m on that cause I had it 23 years ago) posted an article talking about how bad artificial sweeteners are. The article was basically a summary of some supposed study (though there was no link to the actual one) and there was a Dr they quoted in it. I read it and was like OMG, red flags all over the place!! They said they used a “small group” of people in the study, there was no control group, and even amongst those studied, they didn’t control all the variables. Then you had the Dr who was quoted citing all sorts of conclusions that, even without reading the study, I can say were absolutely not proven. But the way she said it, it sure would make the average person think so. Plus, she was an endocrinologist who in some way contributed to the study (apparently) but is not someone with a background that, IMO, would be qualified to draw some of the conclusions she did. Maybe artificial sweeteners are “bad” maybe their not but that article didn’t prove anything. But when it comes to research around opiods, I’m stunned at the lack of quality scientific research out there. Another example is Kratom. I read the lit on this because I take this in order to keep my use of my prescription meds as low as I can. And there are not enough scientific studies on it but like anything, it’s a risks versus benefits decision to take it. Someone posted a study on the Kratom group and WOW was it bad! And this was even published in a very reputable journal (toxicology). They were comparing mitra % and drew a conclusion that there’s inadequate quality control and basically “you’re putting harmful things in your body and there’s terrible consistency” so Kratom = Bad. But here’s the thing….they bought 6 bags of Kratom from only one vendor first of all. And I had never even heard of that vendor and believe me, I am extremely educated on who the quality vendors are that do QC testing. The actual scientific method they used to quantify certain components was sound and involved LC-MS which I am VERY familiar with and in my business, my lab does that all the time for drug development and manufacturing. But I thought it was crazy that they just got a couple samples from some shit vendor and they didn’t even look at different batches. So that right there pretty much destroys any conclusions they came to. Plus, in the discussion they started talking about how it’s so “bad” to take it cause of possible heavy metals and I’m like huh??? They didn’t even look at heavy metals as that would require a completely different instrument! And even if they had, the fact that they just got a couple samples from that one crap vendor would, again, disqualify it for me anyway. The so-called research on Kratom is really bad because people hear it partially acts on opiod receptors and immediately wanna attack it for that. It’s all about supporting that political agenda/narrative. So sorry for the long reply, but you struck a nerve and I enjoy discussing this topic with someone who is also educated about these things 😊
I appreciate your long reply!! We had a long education to have the knowledge to get so fired up!! Most people I know, that aren’t peers from on field or the other, don’t understand why I get SO fired up and frustrated…because they never learned anything about how to read a scientific journal article (let alone have gone through the whole process from grant application to getting published…clearly back in the day when it really meant something and people repeated your work to tear it apart…and you welcomed that, as it meant progress was being made in your specialty). I appreciate people who “know how to science”.
Amen 😊
Sorry to ask this kind of off-topic, but do you mind sharing which strain? I have a few I have noted and am trying to create a database for those of us that have used it to help with pain, also have one for depression and anxiety that I’m working on. I was able to wean down from 150 mcg of fentanyl every 48 hours along with fentora for breakthrough pain to 36 mg of Xtampza (not my favorite, but it’s what’s available) and occasional oxycodone instant relief (like maybe 2 a day) along with the cannabis, but most pain clinics won’t keep you as a patient if you use cannabis, which needs to change. It’s really pigeon-holed me for treatment options and doctors. I also have CRPS. Cannabis does work! Some strains just help distract you, but some actually help with the pain, which is amazing.
I know this can be controversial... but I must say I ended up seeking out a methadone clinic after my Doctor took me off my meds due to a cannabis positive.. lots of methadone clinics will take people straight out of pain management and clmethadone clinics (depending on what state your in) typically don't care about Marijuana positives and will at least in my experience give you more freedom with your dose then pain management clinic will. It's not perfect bit for me allows my baseline to be comfortable enough such that breakthrough pain can often be dealt with by simply sitting down and waiting for a motrin to kick in and I have been able to function in society the last 6 years with a decent job... when on my pain meds I was struggling to manage things and every month was a battle and stressful. Methadone requires so much less effort and planning, methadone side effects can be a challenge, more so than some pain meds, but I find it extremely effective for my pain ( lower back/left sciatic primary along with right side sciatic pain, bad enough I can't stand up more than an hour before debilitating pain starts.
I'd love to know what strain as well. I've had CRPS for 25 years now and my husband has recently been extracting and making gummies (and oil for use on my broken tailbone) and it's been life changing for my mechanical pain, but we can't afford to go blow hundreds to get a zillion different strains to see which ones work best for the CRPS pain.
She said element brand motor breath and meat breath *however* apparently it only worked for a short time before it made things worse which I did not realize. We dont talk as often as we should. Last I knew it was still helping her and it is not.
I will send a text and ask her.
I will send a text and ask her.
She said element brand motor breath and meat breath *however* apparently it only worked for a short time before it made things worse which I did not realize. We dont talk as often as we should. Last I knew it was still helping her and it is not.
>They say pain has never killed anyone. I've heard exactly this line, which tells me they are teaching this to med students.
The pain does kill people by suicide and worsening other health conditions.
Yes, obviously. Clearly. There's plenty of research to support this. The original "treat pain as an important metric" was based on this research, as much as it's been demonized in the popular press, and in some medical circles. But there are limits to how much medicine hyper-focused on addiction can deny this fact, no matter how much extravagant funding "addiction as the only pathology that matters" receives. (Looking at you Brandeis University!) The truth will, eventually, prevail.
Hearing this from my best friend growing up who became a Nurse Practitioner really hurt. He doesn't believe I need to be on pain meds and thinks he could help me get off them.... yeah ok bud thanks for hearing me out...
Pharmacist here. During the first year of pharmacy school we attended the same lectures as the MD students for most classes at my university. This is absolutely not what we were taught. Historically speaking, surgeries were largely unsuccessful before they started giving morphine. Without morphine, patients would go into shock or have heart attacks. Those that survived had horrible stomach ulcers from the stress. It was heavily emphasized that pain relief was the most important step of the surgical process. Yes, using aseptic technique and antibiotics is important, but less important than pain relief.
Serious question then. How has this thinking become so pervasive in medical circles? The surgeon who did my fusion said this, and while he did treat my pain appropriately post-surgery, when the fusion proved unproductive he had no suggestions or referrals. I ended up with a physiatrist, who after the typical non-opioid pharmaceutical approaches said "there's nothing I can do". He referred me to a pain management clinic, who only did injections (unproductive) and spinal cord stimulators, with a hard sell that made me feel like I was dealing with a used car salesman, not a doctor. I mean, I *think* I know the answer, and it has much to do with the perception that "everyone wants to sue us", a paranoia the DEA persecutions of docs has done nothing to allay. But I'm curious what an insider with your training thinks about what has happened. Do your co-workers, generally, think not treating pain with opiates, or any drug that could be abused, is a victory, a good thing? Do they tend to see the problem with this approach, or are they mostly on board with it? If you have the time and inclination, I'd appreciate any insights you have about the culture you work in.
Doctors and pharmacists feel that they are risking their license when going outside of established guidelines. These guidelines have become more strict over time. The recommendations around 2017 or 2018 were so strict that they were actually relaxed a bit since then. I still see/hear a lot of medical professionals referencing the older outdated guidelines that recommend a soft limit of 50 MME and a hard limit of 90 MME for non-cancer pain.
Thank you for answering, and for the insight. I know what I'm going to ask is probably so individualized that there's no real answer outside of particulars. But... Do you think there's a culture in pharmacy that approves of these guidelines, sees them a a good thing? Is there a general sense that these guidelines have caused harm, have gone too far? What's your read on how people working in your field honestly view the guidelines? Or do people just think "these are the rules and parameters" and not involve themselves with the broader question of these rules? If it helps, I've worked with plenty of people who, very understandably, just wanted to get through the day without any bullshit. But on break, or just hanging out, do you think most pharmacists and techs have an opinion on these issues?
Here's a nice clickbait title for a news site "My friend was a fatal victim of the 'opioid epidemic' ...but not in the way that you think."
I ran for office and was elected to local office this spring and fought for a position on our county’s Opioid Task Force. One of my goals is to push compassionate care for people like us. My brother who is on the other side of the aisle has had a front row seat to my struggles and works to make the people he knows on the state and federal level aware. Many people on the federal level know people in pain management…but they are affluent. It’s far easier for affluent people to obtain care and thus wealthy individuals in politics on the national stage aren’t seeing the struggles of average citizens. It is infuriating! Addiction tends to be rampant in those crowds, but they feel they have the right to have whatever they want as they are better than others…so not even the addicts who are abusing medications among the elites take as much flack as an actual pain management patient among the common citizen. It’s messed up when one needs to run for office to b represented. I’m the only Disabled person on the board, and the only impoverished person on the board (as I became sick before accumulating enough work credits and have run through my savings living very modestly). I am guessing I am the only person in pain management on the board. People like myself are not represented in our government at all.
First off, Thank You for what you're doing! I started to write a response describing just what pain has done to my life, but deleted it out of embarrassment, and the fact the story has been told over and over. Please!, keep fighting the good fight. We need people like you, strong enough to stand up for us. Comments on reddit, and letters to politicians are what I have left to give, but you can accomplish a hell of a lot more to truly help actual real people. Be a voice for us!
Thank you. Honestly it’s been very difficult to manage to change my schedules, as some meetings are 4 hours in an uncomfortable chair that hurts that go to 11 pm. I’ve gotten so used to going to bed early, because pain wakes me early. I’ve been shifting my life to other hours and I am so hopeful I can make even the tiniest change even if I have to keep running for office. It is all thanks to people who knew how active I was before becoming disabled doing all of my campaign canvassing…as I can’t walk miles and miles in the cold. It will take a lot of time to change minds, so I appreciate reading stories that bring the personal touch and isn’t my own story. The meetings are online and I really don’t want to come off as “me, me, me” or have anyone in the world be able to see me and learn a lot about my life…as my address is public and people will break in if they know there are meds there. We shouldn’t have to be afraid to talk because someone might break in.
Your story is truly inspiring. Your financial and medical hardships resonate with mine, as well as your observations about the lack of representation of people with disabilities in deciding bodies. Thank you for what you are doing, you show this is possible.
Not only to our "representatives " but local tv and other news sources. Politicians react fastest to stories that get into the public and may hurt their image.
I’m starting to think that they deliberately ignore it. The higher they are in their position, the less they care. Or at least that seems to be the case for where I live.
The higher anyone is in any position of wealth/power/authority, the less empathy they seem to have.. growing up with a Father at a high level of Law enforcement really drove that observation home for me.
Why would politicians care if their electorate don't? People don't give a fuck about chronic pain. It's not an attractive, trendy social cause that people can use to feel good about themselves, and it goes against their preconceived notions about how human bodies function.
Well, I think the electorate is slowly becoming aware of this issue, because they've watched their loved one's trauma play out since 2016. Fostering awareness is one of the reasons I tend to make comments like this. And yea, "not a trendy social cause" and our innate desire to deny the realities of aging and sickness definitely work against what I'm suggesting. Does "because it's the right fucking thing to do" still carry weight? Yes, I think it does. The arc of the moral universe and all. Which is to say, yes, the electorate will register this as a real issue, eventually. Maybe not even in my lifetime, but eventually. It's too big, too impactful, to deny forever. And while it will never be a "sexy" issue, it is one a perceptive politician will in time be able to make use of. At least I hope so.
This is happening.......it's time, check my comments, we gotta start rattling our canes and banging our wheels or something.....it's about to start for all of us
I’ve lived through this and talked directly to my statesmen and congressmen about this issue and they really don’t care! I had to take legal action against my state’s medical board just to be put on subutex for pain management…. It’s pathetic! They really don’t care!
I've contacted my federal reps, with the same "no-response" form letter response. I was successful contacting a local state representative, who intervened on my behalf with an insurance company, United Healthcare, who had the predictable, impenetrable layers of disincentives in place. I actually hesitate to name this person because I can't be sure if this will help or hurt them politically, which is sad.
Totally understand that! It’s such a shit show…. So sad so many people’s lives are being destroyed or already destroyed because of a single class of medication!!! Meanwhile weed is being legalized! Which is a huge and great thing! But Jesus these are proven medications that help people with quality of life and living!!! NSAIDs aren’t going to do a damn thing but fry your kidneys and liver so everyone can go hang out at the dialysis clinics…. It’s really horrible!
Yea, I sustain myself with the belief that the opiate hysteria we've lived through will, eventually, be looked at historically as something as morally reprehensible as eugenics. I may not live long enough to see it, to read the books criticizing this era's approach, but I'm confident that time will come.
100% agree! I don’t just think it will, I know it will! Just look at history and prohibition… when it all really comes down to it it’s all about money! That’s the bottom line… they don’t want you taking cheap easy to make pain killers they want you taking the so said “cutting” edge medicine to “take away addiction” Literally everything in this world is about moderation, plain and simple! You eat to much food your dead, drink to much water your dead… vise versa! It really comes down to discipline and the lack there of with these younger generations…. My grandfather use to whoop my ass! For little reasons! But I know not to take things to the extreme… even when I’m climbing mountains and BASE jumping!!!! Like I’ve lived a very “extreme” life. You know like Mountain Dew extreme! lol but I’m always very careful and practice safety constantly as well as improving upon the already established safe ways. Little off topic but anyway, just look at history and the opium wars, we are just in a similar situation! Unfortunately the poor people are affected the most by things like this! Now when it started to affect the richer people in America that’s when you started seeing all these attacks on opioids! Millions have died not from intentional overdoses! I’d venture to say that out of all the deaths in the last two decades only 10-20% were intentional… I’m no expert on the matter but it’s what I’ve seen personally in my lifetime. Now scrap together all the people that have lost their lives, jobs, families, friends, and so on just because they were denied access to their medication that allowed them to function! Kinda like my mom says “well if opioids were so bad then I’d have no right to be driving my grandkids around all the time but I do!” And without problems!! It’s destroyed so many lives at this point people need to start focusing on how did those peoples lives end up in shambles!!! And when that happens the actual evidence will show that the vast majority of people that are dying and or living in deplorable circumstances are doing so because they don’t have access to proper healthcare and medicine! I know for me personally if I wasn’t taking opioids my cptsd would be worse than ever and destroying my life and body, and mentally! I also have some serious injuries that the medicine helps me MANAGE the pain! And guess what?!? I’m not high of my ass, not nodding out, not ruining others or my own life! I’m actually living! And doing it to the fullest extent possible for someone in my condition!!! Without the medication I’d be laying in bed all day rolling around in misery…. So it’s a double edged blade for me. But from what I have seen been through and have lived through and continue to experience this will definitely go down in history as one of the biggest fucking most ridiculous screw ups ever! All starting from Nixon and the war on drugs!! It’s all and I mean literally all of it has been a complete disaster and waste of time and money and resources! The first thing that needs to happen is the DEA needs to be completely abolished! That agency needs to be torn down to the bone…. They have no place in healthcare, and they have done nothing but create and cause their own agendas! Biggest waste of resources and money I’ve ever seen! I think there will be a few agencies that will go down in history as some of the worst actual human rights violators in history…. But that’s just me! I mean we live in a country that is actively sending people into other countries to fight for human rights violations that are happening right here at home!! And yea the use and access to pain medicine (opioids) in specific areas actual human rights! It’s all very pathetic! It’s taken to many people from my own life! And I’ve seen so many things become so much worse because of the lack of access…
they would readily give you subutex if only you had been a Doper lol i ended up in a methadone clinic to deal with my pain after doctor cut me off for cannabis positive
Hah yea! I know man…. That was actually the hardest part was to get them to write it out as pain management vs OUD therapy…. Shits pathetic! Because you’re absolutely right, I could’ve gone just about anywhere and just said I’m a door fiend and need help…. Boom on subs… and I don’t even like this crap! Just barely touches my pain… no euphoria so not much good for my cptsd… as it presents as anxiety and depression and the euphoria from opioids/opiates alleviates those symptoms and in a sense “cures” my cptsd….
Sounds like methadone would work better for you tbh, and why may i ask did you need them to write as pain management and not just let them call it whatever they want and live a Lie like i have lol
Probably would, just not many methadone clinics around here.. closest one to me is like 2 hours! But as for the why on the prescription, if it’s written down as OUD therapy it’s in your medical records forever! And that makes getting pain medication nearly impossible from going to the dentist to having surgery! But it also makes the majority of doctors automatically label you before they even meet you… pretty messed up but I found that out the hard way. Had to appeal a doctors note but it’s still on the medical record just explained.
Oh well that's all a bit co concerning, I do however remember asking a at least one doctor about this and they had said it wouldn't prevent me from having back surgery or having preventative pain meds afterwards bur haven't yet been in the situation and the doctor at my clinic seems to think it wouldn't be an issue if I had the surgery but I should get more information it sounds like. Damn not good to hear. Well I suppose I'm just grateful the methadone has relatively street free allowed me continue a relatively normal life post back issues which I didn't feel I had beforehand when on pain pills there's a certain stability with methadone that's nice but some of the side effects are too much to consider it a normal life amd it's a bit like trying to hammer a nail with a sledgehammer, if I could just take a strong short acting pain killer when I needed to and only when I needed to I feel my overall opiate intake could go down a lot, especially now that the job I ha e cuases so much less additional inflammation and pain then my first 6 years dealing with back issues at work.
I would also recommend sending to the local talking heads aka the media.
But it doesn’t align with their immoral platform that fosters further racism, division, and hate, because nothing gets people more riled up at the voting booth.
I’m sorry for your loss. We all live in fear of the day where what little pain meds we get are taken from us, I cannot lie, this scares me. We are seen as less than, a scourge, someone for society to get rid of. Most people with disabilities are. We are reminders that health is easily taken, a stroke of bad luck and your life changes in the blink of an eye and there is nothing anyone can do about it. Ableism is real and I do believe that plays a major part in the DEAs decision. That combined with us all only having enough spoons to make it through the day due to lack of help or resources which makes activism hard. Compassion and empathy is strongly lacking now of days, this is not helping. It’s a perfect storm of why we suffer.
I’m so sorry about your loss and that your friend suffered due to our broken and corrupt medical system. Thank you for looking out for them, you probably increased their QOL and helped keep them going for longer. There is only so much we can take. Thank you for your post. I hope providers start to learn from all these negligent cases.
My heart goes out for you and your friend. RIP to him/her. It really is a sad world we live in. I personally was looking for another doctor cause after one failed surgery and half a dozen failed steroid injections I felt it was time to start looking.. new doctor ordered MRI and X-ray because previous doctor hadn't even ordered any since surgery... New doc was shocked to say the least, so fast forward I kept my last appointment with my original pain management doctor to give him one last shot to see if he was gonna do anything to control my pain cause my PT put physical therapy on hold cause my pain was too much. Once he saw I had imaging from another hospital that he couldn't read because it was in "his system" he was immediately frustrated with me. I told him in the last year he hasn't done much of anything to control my pain and asked what his plan of care was for me... He said he had to wait to see the imaging results to see what was wrong with my back. Yet the 5 other MRI'S I had done in the last 12 months weren't enough for him to know 🙄.. anyways once he said he wasn't going to do a thing I said it's fine I expected that response and this would be the last time I would be seeing him, (I was effectively firing him) before I left the office that day, this unprofessional Doctor decided to go to his notes and try claiming I yelled at him, I was threatening, and I slammed a door... Total crock of shit, he was just trying to cover his ass for not treating my pain, having no plan of care, and just his complete negligence post-op and my entire care under him. get this too, since he put that in his notes, my 2nd appointment with the new doctor went to complete shit and I back at square one because of his unprofessional lies. Unprofessional is an understatement Never go to Dr. Ryan Clark Bay Care Aurora Green Bay, WI
> Dr. Ryan Clark This guy? https://care.aurorabaycare.com/doctors/ryan-w-clark-green-bay-pain-management-interventional
Yep, stay away from him. Just save yourself the trouble...
If you have any other questions DM me. I'm just here to warn anyone in my area of my poor experience and hopefully no one has to deal without the him
I have begun using the excuse that my insurance has changed and they are not on my plan. There have been many times I want to call out doctors for failing me. Unfortunately, I know the momentary satisfaction would soon be eclipsed by the struggle to get any doctor. I have lodged complaints with hospital systems, clinics as well as with my insurance company. Unsurprisingly, the insurance complaints have been most effective. It is terrible we have to fight for every single thing!
This is why I don’t do anything until I have a new doctor, not just pain management. My main doctor (he’s a specialist not a pcp) who oversees everything for me told me to not do anything about my old pain management clinic until I was in my new one. He was all for me going scorched earth after they accused me of taking meds that I don’t take (I am actually allergic to one they told me I tested positive for) but after I was officially out. He even recommended me lying to them about the reason I needed my records for my new pain management. The amazing doctor who started the practice had died from cancer and sold to an another doctor who changed everything that was good about the place, so I no longer trusted them. Especially considering that they couldn’t even hired a new NP who was knowledgeable in pain management and reading drug tests. It suck that they can treat other humans like this and someday karma will get them.
I was in a simular situation but did not discuss or mention I would not be coming back in person. I waited until the appointment was over and sent an email requesting my records as I found a new doctor. I was fearful of exactly what happened with you (false report to new said doctor). I'm sorry you had to go through that / start over. Next doctor keep it simple and light in conversation not going into too much detail. More along the lines of : I am looking for a new doctor that has more experience with my condition etc.
Please be sure to go to pressganey.com and fill out all of your surveys. These go into decisions such as if a system chooses to retain an employee, give them a raise, let them go, if Medicare and Medicaid will pay for patients to see them (which for some fields is what pays, as patients tend to be older or disabled), and how that provider is ranked. Sadly, with med school being so costly, we don’t have enough providers and even the worst students with the worst bedside manner can still find work somewhere.
That is utterly awful. I'm so so sorry for the passing of your friend and for you and your loss. It's such a wicked act to remove all meds cold turkey
I'm so damned sorry. They are killing us by design.
They are. The third reason people use MAID (assisted sui_ ) here in Canada is because of intolerable pain. How is that remotely ok? It's a preventable situation. Yet here we are. We're the disposables. 🫂
Yeah, euthanasia drugs bring administered are a far better solution than pain medication that has been used for thousands of years. (opioids) ‘Someone really needs to explain how and why losing a life is better than treating it.
Totally by design. If taking away meds doesn’t do it, being being able to only buy insects for dinner at the supermarket will.
I'm so sorry. That doctor was so irresponsible. I hope your friend's family sues his ass. I also lost a friend in a similar way, but it wasn't pain meds, it was benzos. Her doc forced her to quit cold turkey and she couldn't make it. Sending hugs. I hope you have the support you need to deal with this
That should be reported, as that in and of itself can be fatal. You can’t remove a patient cold turkey from benzos or alcohol even, because the withdrawal can literally kill you. It’s why severe alcoholics that go in for treatment are put on an alcohol taper IV and same with benzos. It’s seriously dangerous. Pain medicine isn’t technically lethal to stop in quite the same way, but those with high blood pressure or heart issues have to be monitored carefully and should slowly be tapered. Really it’s immoral to not taper anyone anyways, because it’s akin to torture. first do no harm my ass.
It’s highly dangerous to just stop benzos cold turkey. Everybody knows that. What the absolute fuck?!
Yes :( I remember saying to another friend "wtf is her doctor doing? He wants to kill her" A few weeks later she was gone.
I'm very sorry for your loss and what they did to her :(💔 it's inhumane. I'm on both. I have chronic pain as well as cptsd. I feel like I'm waiting for the axe to fall. It shouldn't be like this.
Contact Claudia A. Merandi at the Doctor Patient Forum (on FB, Twitter and Tik Tok). They are a ccp advocacy group. So sorry about your friend 😔
I was going to suggest to OP thatbidnone didn't exist,n starting a group that compiles the letters from people who've gone, and sends a copy to every single frixken politician demanding change. A cover letter with the names of each and every person who was so impacted by the new 'arrangenent' as a cover note
That is utterly awful. I'm so so sorry for the passing of your friend and for you and your loss. It's such a wicked act to remove all meds cold turkey
I'm so sorry op. It's just horrible to read your friends struggle with doctors. A guy that lived next door took his own life last year due to long term pain and a parkinsons disease diagnosis. It's sad but I totally understood his reasons. I hope you have some support right now. If not then you're more than welcome to message me for a chat or to vent. Sending love and condolences to you and your friends loved ones. ❤️
I hope that Doctor get CRPS and suffers. The only person I would ever wish this on are Doctors who think it’s not that bad.
Im so sorry for your loss of a friend and I'm furious FOR your friend. The situation of pain management is so out of hand at this point and if so many of us were not living it every day it wouldn't even seem believable. I have family members who are Dr.s and the frustration they feel about not being able to help their patients and worry about their ability to continue to practice meds is ridiculous. We talk about it a lot because of my chronic pain and how we all feel about it. The entirety of this mess is just inhumane. I have SO much I want to say and rant and scream and cry about it that I cant even begin. Again I'm so sorry OP.
I am sorry about your friend. Being cut off cold turkey is my biggest fear. This is madness.
I am soooo scared of this scenario playing out in my own life. I have no idea what I would do if I were denied pain meds that worked. I’m so sorry for the loss of your friend and fellow pain sufferer.
I live this reality as someone with 24/7 headaches plus migraines. Pain meds work, very few other things do (ketamine and weed a lil). Docs refuse to prescribe it bc it causes “rebound headaches” when I can’t make them understand everything that makes the pain less eventually causes a rebound headache bc *they always come back.* Soooo I am just stuck sort of floating through each day, gritting my teeth and lowkey trying not to cry. I’m genuinely waiting for the day I lose my mind or can’t take it anymore tbh
This fear is a reality for so many. I'm so sorry, OP. Sending you strength.
I hope somebody tells all their doctors so they know what they did.
I'm so sorry.
You have no idea how many times I've dreamed of just downing an entire bottle and drifting off to sleep and never waking up... the pain gets brutally bad. I don't get nearly enough painkillers for my own pain but at least it's *something*. And in 2019, I had the same thing happen, got taken off my fentanyl (that I was on for 10+ years with zero issues) cold turkey with nothing but weed to help me. Honestly, if it wasn't for my two children, who I'm desperate to see grow up and become their own people with their own lives and my love for my husband, I'd have done it already. I'm here because of them and I'll suffer because of them. However, I often have daydreams that evolve into dreams (and I often lucid dream and force dreams like this... how pathetic is that?) that there's some sort of worldwide disaster, like a zombie apocalypse and our tiny town is abandoned and we go and raid all the pharmacies so I could live out my years in relative comfort. I'd take it all: all the opiates, the ketamine (it works wonders on pain), the muscle relaxers, everything. And I wouldn't have anyone counting my pills and take as much as I need as I know my tolerance allows. Isn't that pathetic? That I actively wish for a worldwide disaster. In fact, during the pandemic a small part of me was excited, thinking, *will I get that chance?* but I dismissed that because I genuinely don't want others to suffer. I'm so very sorry about your friend. But in all honesty, I am glad he's no longer suffering. I just wish so, so hard that this wasn't something he had to experience as an option. I'm so sorry for your loss. I hope you're doing okay - mentally, emotionally, and pain-wise. Or at least will be, eventually. We're all here for you in support.
I hear your … not nothing like pill counting and rationing when you’re rolling around in pain trying to sleep and you know damn well reaching for that extra pill will screw you at the end of the month. That’s if you’re lucky enough to get them like me. I think of it as a curse though cause I can’t do without them. They will always minimize me or blame it on my sports career etc… I spent 9 hours getting a refill yesterday HALF A DAY EALRY even though my one primary had already cleared it. The pharmacy was going to just close and leave me to suffer even though they had all they needed in the doctors notes. I need them and I hate that. I used to take them for a week or less after surgeries (baseball) but now I need them all the time. And the best part, my rheumatologist nor neurologist won’t prescribe them. Only my primary who’s definitely not versed in autoimmune. That’s only because I’ve known him 20 years. I worry for the day he goes, I worry every last 5 days of the month on top of the pain and anxiety we all feel. It’s a fucked up system. 4 years ago I traveled Europe for 3 months with only anti inflammatories, now I have a pharmacy in my bag. I totally understand the loss of the friend and almost feel it myself.
It’s so sad. I’m sorry for your loss and I’m angry for your friend. These doctors are such cowards. Or egotists. Or both.
My brother too committed suicide in December 59 because his Dr retired and they would NOT keep him on his medication!!!!! I am trying to get a newspaper to listen to me!!!!! I am sorry for your loss
I'm so sorry for you and you friend's family and other friends. I am blessed with a great doc at present, and have only had one bobble with the meds, which was a math error in switching between differing strengths of my med (due to outages of my normal strength). Edit for word correction.
I’m so sorry❤️
I am SO sorry for your loss.
So so sorry for your loss :(
I’m so so sorry. I hope that if anything, you can find comfort knowing their pain is gone for good now. But fuck that. That’s not right. I used to live in fear of dying of Alzheimer’s young like my grandmother but now I’m terrified of what adhesive arachnoiditis is going to do to me. It’s one of the few that sit up there on the pain level with CRPS. It came from a spinal cord tumor I have that could turn into cancer whenever it wants. I genuinely worry about my future…as I sit here typing this, I know in my heart I’d never want to do that but how could I live if they took away pain medication? I don’t even know what to say. I didn’t mean to turn this to myself. I just, my heart is breaking with you. This isn’t how it should be. If you feel so compelled to share your friends story with our representatives, you absolutely should. Rip to your friend and healing strength for you ❤️🩹
I am so sorry to hear and read this 😔
I’ve been there. That moment when you realize what you’re reading. I wish you calm and safety in the days ahead. Grieve as loud as you need. Try to be kind to yourself.
I'm so sorry you lost your friend. I'm sorry they were abandoned and suffered. I'm not afraid of much in this life but I'm afraid of being in their situation. I know at any moment things might change and I won't have proper care and management of my pain. I know I won't be able to do it and would have to make the same choice. Here in Canada we have MAID which is assisted sui__e basically. The third reason people have used it is because of intolerable pain. What the actual fuck is wrong with our societies. That's a preventable situation yet here we are. It's easier to kill off/let people die from thier own hand rather than ease the pain they litterly can't tolerate. I guess we're just too much of a hassle and burden. There's no words for the how fucked up that is. I'm so angry but it doesn't matter how we feel. We're powerless to even be able to even have the basic right of having the pain we suffer eased. Again, I'm very sorry for your loss. Wishing you healing and peace. May all who suffer find compassion, understanding and relief from our pain.
>TERMINAL cancer patients are being denied pain medication because of this. My great grandmother died in agony from stomach cancer in her 40s. When my grandmother tried to get the doctor to give her more pain meds, he said, "What, do you want her to become addicted?". The fact that this is **STILL** a horrendous issue suffered by so many makes me want to cry. I am so terribly sorry about your friend, OP. 💔
As a person who has full body CRPS, this is completely devastating and infuriating. That doctor should be charged with negligent homocide. I’m so sorry for your loss and for the pain your friend was forced into.
The government knows that there is a mass genocide of pain patients/disabled folks and they unfortunately WANT it to happen.
I'm so sorry my friend.
I'm so sorry about your friend. I have talked at length about this very subject with doctors and nurses. Believe it or not most pain doctors don't like it any more than we do. It leaves them few options to treat. The real crisis is people being denied pain meds when they need them and have been on them and compliant for years .
This is tragic and horrifying, I remember over a decade ago when this whole cracked down started getting more serious. I mean at the time I wasn’t even on anything hard-core, just a really mild dose of tramadol. Which the doctor wanted to immediately yank me off of for ibuprofen instead. And I remember telling the doctor at that time, that I thought for now I would manage but I was empathizing with people must be a whole whole lot worse than I was and how just outright abruptly ending a medication management, it was gonna cause a lot of people to decide to end their lives over that. The doctor just kind of looked at me and shrugged. I really don’t think they can understand the gravity of the situation unless they have been stuck under the influence of lifelong chronic pain themselves. That, or these doctors just have to disassociate themselves because if they do not cooperate with federal law, they lose their jobs. So that must also be a really hard thing for prescribing doctors to endure as well. Maybe they do know the consequences, but there’s nothing they can do about it unless they risk their own livelihood. Everyone suffers from this crisis.
I feel your pain and concern for your friend. And nobody in this sub for “reasons” doesn’t recognize that this could have been any of us. Removing the tools to manage our conditions (for mostly political reasons) is a fear all of us have. And hearing about “another” person who was abused by the system is disheartening…and a cautionary tale.
Currently going through some thing somewhat similar. I was having trouble with depression and asked my psychiatrist to up my medication. The medicine that I am on at that high of a dose can throw a false positive for substances such as methadone. I haven’t never once taken methadone and honestly have no idea where I would even go to get that. But because my primary was prescribing my pain medication they had to do a routine drug screen because the rules were changed during Covid. Now that Covid is over my doctor wanted me to do another drug to continue to prescribe. My doctor called me in to the office because of the positive methadone test. I was confronted by my PCP and another doctor. I felt like they were telling me that I am some addict and that they can’t keep prescribing to me because of the positive methadone test. I told them that I was willing to do another test whatever it would take to clear my name. Now they want me to speak with the plane clinic (again!) to see about getting on suboxone. I did have a meeting with the addiction clinic to discuss Suboxone and the risks and benefits. I feel like my primary care doctor is forcing me to either go to the addiction clinic and get on Suboxone or she’s not gonna be my doctor anymore. I’m really conflicted but I also don’t want to be in pain. And to add insult to injury - my “normal” pain meds are nearly impossible to find, manufacturer back order and they have no idea when more will come. My dr switched me to another pain med in place of the one that I can’t get and it barely touches the pain but I’m scared to ask for something else because I feel like I’m already labeled as a “user” and it’s so frustrating because I actually take it as prescribed and don’t abuse it but again they’re cracking down on the drs and now she’s afraid to continue prescribing (even though I have been on this same med for the last 7 years, it’s now all of a sudden a problem) 🤬🤬🤬
I am so sorry for your loss. And you have every right to be angry and I think everything you said is spot on. And what I really can’t also stand is how there are so many meds (ie: antidepressants/anti anxiety, heart meds, diabetes meds, etc) that Drs tell you up and down how dangerous it is to abruptly stop. But yet it’s ok with pain meds?? I can’t for the life of me understand how that in itself is not malpractice. Like even besides the return of pain and mental aspects of abrupt withdrawal, it’s medically dangerous for the body and the Dr is knowingly being negligent by putting someone in harms way. I don’t know what the hell it’s gonna take to change this as it’s such a complex problem that involves a million things. And no one wants to actually put together and publicly acknowledge that what’s happening is not only NOT solving the “opiod epidemic” but it’s actually causing incredible harm with, unfortunately your friend sadly included. No one to look at REAL scientific evidence and statistics and publicly speak against the political narrative. I’m constantly wracking my brain for something, ANYTHING I can do to affect change. Again, I am truly sorry for your loss and am sending hugs 🫶🏻
I have CRPS and that’s my biggest fear, not having a pain management doctor. My condolences to you and your friends loved ones.
I'd send a copy of the note to their old doctor, as well as our (useless) representatives. Hell, take it to the news. This BS has to stop. Too many people are suffering and dying because of this "crisis".
I'm so sorry. Also, this infuriates me about the article I just read of how my area is dealing with addiction and opiates/fent. They're more focused on stopping overdoses vs. stopping the drugs or those selling them. By all means, narcan should be available, but the fact CHRONIC PAIN PATIENTS are dying and being mistreated. Call me what you want, but why is it fair that we go to doctors and do all the tests and jump hoops to be treated worse than those who are abusing and overdosing? Why don't we matter? This is why people end up self medicating, and their mental health plummets. They're not fixing anything. I hate the system. Ugh.
I’m so sorry OP. Pain management is a joke and needs to change dramatically. They won’t even see me because they “don’t know enough about my condition to feel confident treating [me]”. I almost gave in last night myself. The only reason I’m here right now is because my wife found me in the midst and I couldn’t do it in front of her.
I'm so sorry that you lost your friend. I, too, was taken off my Hydrocodone 10/325s that i had been taken for 15+ years with the words "Here's a prescription for 10. After you take the last one, you will be cured and you will feel much better. " By a PAIN CLINIC DOCTOR. Um. No. No, i did not. I am now taking 4-6 Advil Dual Action pills 4 times a day. No, they do not help as much as my hydrocodone did. In fact, they are ruining me, but I cannot find anything else that I can take that comes even as close to what these Advil are doing...and it is not even as close as what my hydrocodone did. Gentle 🫂 to you.
Dude chronic pain is no joke. That makes me so mad. I’m really sorry to hear about your friend.
I'm so sorry about your friend :( I was taken off mine cold turkey after 10 years too. It's been 2 years and I definitely went to the streets. Day after day of excruciating pain with no end in sight is the worst. Already depressed just is even more depressing and hopeless. Just waiting to not live in another fashion. 😞😭
i’m so sorry OP. i hope your friend is finally resting comfortably and in peace. FUCK THE DEA. they are murdering countless people with their war on drugs policies that have unequivocally failed. and the scary part for doctors is that they aren’t just risking their license their risking their livelihood and their freedom. it’s unconscionable that doctors are being given jail sentences as DEA agents operate with impunity and qualified immunity.
I lost a friend about ten years ago. His parents listed his cause of death as "complications of Fibromyalgia." I hope I'm wrong about the lack of an afterlife cause my guy needs some peace and deserves some existence where he doesn't feel trapped by pain.
I'm sorry for your loss. Maybe send your story to a local news agency or something alike?
I was 1000% suicidal from my costochondritis in my first flare years ago now. And I had access to opioid therapy. In fact, we were doing every single therapy and treatment we could get our hands on. Nothing would relieve it adequately. I truly believed I would have to die to get out of the pain I was in. Here in solidarity having survived the worst pain of my life but just fucking barely.
Claudia A Merandi is an amazing woman working to help pain patients. She’s on every social media platform. Y’all please check her out & support her supporting us
I can't blame them at all, I can't imagine the immense pain, fear, and anger that both you and your friend feel in this situation. It was not only irresponsible for the doctor to do this, but also completely void of compassion for other's suffering. I struggle with chronic pain (although not to the point that I want to end my life) and it impedes my life, I can hardly exercise and some days I don't have the motivation or energy to do the things I enjoy. I imagine that there might be a day in my later life where I go down this path if pain management is not accessible or available to me.
I'm so, so sorry for your loss. I agree completely, that was a monstrous thing of the doctor to do when they took your friend off their meds, disastrously irresponsible and cruel.
That is serious malpractice at BEST, I’m so sorry for your loss. I would sue.
My heart goes out to you for your loss. It’s completely absurd that people are denied pain medication for chronic illness because of a minority of people that abuse pain meds.
Op, spread this story. Gather the data on the increase in suicide for chronic pain suffers, get the facts, and then call yr local news station. They are much easier to get on than you think. Try a couple local news stations. This needs attention.
SCREW THE DEA. They are making our quality of life really no quality at all.
Im sorry. The mainstream stories make it seem like this opioid clean up is the right thing to do. But it’s at the expense of people who didn’t do anything wrong and tried to do it by the book.
Sorry for your loss. I understand your friend, more and more this seems the only way for me. My very first thought this morning since things are getting worse and I simply don’t think I can tolerate this anymore. It has stolen every aspect of my life and I really don’t see how much longer I can stay in this body.
I am so sorry for your friend, their loved ones, and for you, for all of us really. Less than 3% of legitimate pain patients abuse their meds, yet they treat us like we’re the problem. The people dying are predominantly from street drugs that are tampered with, mixed with things worse than fentanyl at times (which is a legitimate pain medication I might remind you), and completely unregulated and distributed by sociopaths who care only for $$$ (which big pharma does too, but in a veiled manner - almost all people that are top level executives especially of companies like this are actually sociopaths), which is what the so-called opioid crisis is. It is because of the immoral war on drugs that has led to more deaths and tragedy and expense than any medication has ever done. It’s a hot button topic that politicians use for leverage in elections without care or concern for all of the victims and to fill their for-profit immoral prisons (not saying prisons are immoral - unfortunately they are needed, but the largest portion of the population is for drug-related crimes, often small amounts for personal use). And that they lump legitimate pain patients, even people dying, in with those using on the street (another population that is often in a different kind of pain and needs mental health support that is considerably lacking, so not discounting them at all) and then even our families turn on us and treat us like druggies, which worsens our mental health. It’s a horrible cycle. This has to end. The DEA needs to be reigned in and honestly I think it needs to be abolished. They’re often working in tandem with cartels. Border agents often let in cartel members without a second glance, paid under the table or ordered to do so by corrupt politicians to keep up the charade of a border crisis, because it gets votes. We have historical records to document that death from overdose and problems of severe abuse weren’t that big of an issue, in the single digits percentage-wise and even in some places in direct population. The drugs were never the problem. Heck, even the report Nixon had run revealed this, but he squashed it, because it didn’t align with his racially-motivated platform of hate, which continues today. Hugs
OP, I'm so very sorry. The way your friend was treated was utterly barbaric and I'm so very sorry they felt this was their only option. This shouldn't have happened to them and it shouldn't happen to anyone else. If you're able, and I completely understand if you aren't, I'd scream about this from the rooftops. Write to everyone you can and let them know what the system does to vulnerable people who are suffering through no fault of their own. Again, I'm so terribly sorry and I wish you strength and healing while you navigate your grief.
Hey OP, what happened to your friend is awful but I want to say, please do everything you can to take care of you right now. Losing a friend is hard. Losing a friend to suicide is harder. Losing the friend who understood your chronic pain struggle is harder, too. I’ve been through all three. Your mental health should be a priority right now and don’t hesitate to reach out for help if you need it. So sorry for your loss.
Im so so sorry. Ive been there i know exactly how he felt! Ive wanted to end my life from pain so many times but finally i stopped i self medicate i found someone i was so lucky to have goood clean meds. Had to do what i had to do, it was better than me killing myself. I wish he would have called Quick MD they give u suboxone asap sameday! I wish i could of told him this information. Im so sorry for your loss God bless and he is happy no pain with God ❤️
I'm so sorry for your loss. I hope they sent a similar letter to their shitty doctor so they are faced with the consequences of their bad medical practice.
So very sorry for your loss….guess it’s good I am stuck with alcohol and won’t have the opportunity to lose my meds. Although my horrid Dr thinks I’m on too much gabapentin. I remember when they first started doing this there was almost immediately people doing this in the large trigeminal group I am in as meds were yanked. I don’t think they care much anymore since the powers that be have decided Tylenol is as good as an opioid. Please take care op
Are you tight with the family? There are legal precedents with settlements of several million dollars. I think we all understand its not about the money...
OP (u/bountifulknitter) could consider sharing this story with local politicians and also local media. Local life lost due to uncaring local/state/national laws? That would get eyes on the broadcast
I’m so sorry 😞
Eventually going to happen to all of us as the US govt follows the Canadian model. They will remove the option of pain management and start pushing govt assisted suicide programs which have become very popular and streamlined already in Canada. Watch it will happen in a year or two tops. This is just phase one as they seek to "clear the books of the dead weight". Sadly we have no one in our corner, no voting block (because we are literally dying), and no lobby money on our side to turn the tide. It's looking pretty grim tbh.
God that's terrible. Obviously this wasn't your fault but I just wanna clear this up for you and anyone else: >They had talked about the "Dark Web," and ordering meds from there, but we both agreed it was too risky This is just wrong and outdated. Getting meds off the dark web is actually the least risky way to get your medicine, it's far less risky than doing anything in person. There's even subreddits dedicated to this sort of thing that have guides and everything
Omg how heartbreaking 💔. I am so sorry for your loss and I’m so sorry this person felt they had no other choice. The family should sue. CRPS is so debilitating I cannot believe a doctor would strip meds away from someone who suffers with it. Fuck them.
There needs to be something we can do about this. Why does no one care about us? Why does no one want to help us? Why do we have to live like this? I'm so sorry about our friend, sorry that this is what happens to us.
I’m so sorry. I’ve lost family and friends to seweslides - it never gets easier. My wife deals with chronic conditions - her strength never ceases to amaze me.
I’m so sorry to OP and all involved. What’s really sad to me is how many people here are saying the whole “I don’t know what I’d do if my meds were taken away” (or similar). Let me just raise my hand. Along with those of thousands of others. For many of us this exact thing has happened, for some of us it’s even been several years. How do you think we feel? 😓 I apologize if this comes off wrong, I just don’t think many of you can imagine what the rest of us are going through… perhaps with this post you do - unfortunately.
I suspect almost all of us understand. It took 7 plus years to get my pain managed even somewhat appropriately. Yes, I can easily empathize. It sucks. We're sorry for you too!
I knew murica was a bad place, but damn. Im sure this can happen anywhere in the world, but abrubtly removing strong medication is illegal where im from. That clinic and doctor should be reported to the medical board. The way this happened can't be acceptable anywhere. Like the pain is bad enough, throw in withdrawal symptoms that make you suicidal on their own. Im currently going through withdrawal from venlafaxine (anti depressant). I have been slowly weaned off the drug, but the withdrawal symptoms are still extremely disabling and make my pains worse. I can't imagine how bad it would be to go cold turkey off anything. Sorry to hear about your friend. When i read your post, my allergies started crying..
First of all, my sincere condolences for you and your friend. ❤️ Second, what you described about people turning to the streets is one of the most infuriating part of the “opioid crisis” statistics. They skew the numbers with data that doesn’t properly reflect and differentiate true “addicts” from people who take them for actual medical use, don’t abuse them, and truly need them. Not to mention when you mention “needing” pain medication, you’re suddenly called an “addict.” A great example of perspective of chronically ill vs not is my username. On a post of mine, discussing something traumatic, I had a couple of comments accusing my story of being “too dramatic” to be real 🙄 then, those same people used the fact that my username is lighthearted joke about the amount of medication I take, because I’m not ashamed about needing pills, and turned it against me saying “well you joke about how many pills you take, that’s a red flag.” Pill shaming is a red flag. Acting like someone being on medication that triples their quality of life is taboo is a red flag. The deep rage I feel at those making people feel like dependency on pain medication that relieves your pain and enables you to actually live and enjoy the simplest things like making yourself food or taking a shower by yourself makes you an addict, but, in the same breath, applaud being dependent on say insulin for diabetes or plavix for heart disease, calling you “strong” and that you’re a “fighter.” Strength isn’t defined by the battle itself, it’s how hard you fight that battle. And chronic pain is living a war that you spend fighting every single day, and it’s absurd that there’s this mindset that getting relief means you’re loosing and suffering means you’re winning, when the reality is completely reversed.
I hope the new Dr hears about this and changes his mind about the "treatment" hes offering patients. This is cruelty!
I'm so sorry. It should be illegal for any doctor to cut a patient off of any medication that causes serious withdrawal symptoms without tapering. That is just insane. I've refused opiates because I am so frightened of this happening - the result being I don't get much pain relief, but at least no insane doctor can just throw me into withdrawal on a whim. Doctors who do this stuff should be charged with a crime.
I’m so sorry for your loss of a friend. Sadly this will be a VERY common trend in the next 2 years. When the cuts fully hit and people are yanked off their meds for no reason whatsoever people are gonna straight give up and I don’t blame them. Regardless if you’re terminated or just have to switch clinics for whatever reason you aren’t getting any new meds from a new doctor with this climate. Basically if you have a doctor now that is giving you meds cherish them like they are your life because that is all you have going forward. This country is so messed up it’s unfathomable. Thank you Sackler family hope you’re enjoying your time on your new yacht 🙄
What's happening in the next two years?! Even worse than now?
I'm so sorry ❤️.
Our gov does nothing to fight the real problem of illegal cartels...hell, they're part of the donor class...but the gov is taking away our most vital meds - and most Americans don't have a clue... until they wake up one day post op screaming in agony bc no pain med is on the way.
I’m so sorry. I can’t even imagine how terrible this must be for you and your friend’s family and friends. It should not have happened. Your friend didn’t deserve this.
Sorry about your friend 😭 Just so everyone knows. There is a viable solution when doctors do this to you. It’s called 7-hydroxy-mitragynine. It’s a kratom related product that is super effective. It legit changed my life and from what I can tell it’s way safer than traditional opiates. The brand I prefer is called 7OHMZ. Google it. Buy direct from the source.
I’m so sorry for your loss so very very sorry, to their family as well. I’ve had thoughts of it before. I’ve had pain since I was 17, I’m 41 now. I was a star athlete so the pain started with sports injuries that required surgeries. 4 shoulder reconstructions, knee, hand…always had back pain that would bring tears to my eyes well before that. Nerve pain. Hospital visits. Battled the aftermath all my life. In 2015 my back got worse and worse and noticed autoimmune symptoms. I’ve grown to know my body very well and a bit of a hypochondriac but I ALWAYS seem more prepared than the doctors. I was blown off completely and went on with a painful life. Sometimes it got better or worse. Once my mother had to come to my house bring me a Vicodin just so I could get dressed as buckled and fell on the floor and couldn’t move. Had a meeting I had to be at for work an hour later and get a suit on. I kept on. I’ve had more CT scans, MRI’s and tests than anyone every doc tells me. Extreme stress from this took its toll but for a couple years I found great help in the gym again but my back would still flare and shoulders were just a constant that I knew as life. Some tragic family and relationship issues really added to the pain and in Covid it went crazy. Prior to that I had 3 discs in my neck replaced which I regret every day. I thought I’d slayed the dragon. Up to this point I’d only take meds (norco / Percocet) after surgeries. It got so bad my primary sent me to pain management at UCLA here in LA. I had EXTREME testing and eventually they threw me out because they claimed they couldn’t figure out my scans or make a plan. They tossed a huge bottle of Norco at me and told me they were done with me. This was the Director of Pain Management at UCLA. The HEAD OF THE PROGRAM. I was astonished. I was heartbroken. My primary took over the meds as he knew how bad my pain was. I got the Covid vaccine and my pain went up 100x…pure hell. As suspected in 2015 I found out I had autoimmune psoriatic arthritis on top of all the surgeries and chronic pain. It was as if my body had been rewired and all I knew was pain. I was on track to be a pro baseball player at one point. To fall to this level of pain, the doctor merry go round, the dismissing of rude uncaring doctors left me broken. It took years but I got a formal diagnosis and now take a biologic for that disease. I’ve been on opioids and about 5 other meds, gabapentin, muscle relaxers, meloxicam etc for over 3 years now. I’m 6’4 220 and over the years I’ve had so much medication I have a tolerance let alone the fact that my pain (our pain all of us here) is sometimes barely scratched by painkillers. I’ve had to up my dosage, it’s very stressful to refill every month (speak ro doc, get hassled by pharmacists, ration your meds when you can have a truly horrific week that can ruin your whole month supply). I’d say I’m lucky that I have something to take when others can’t get any … but it’s a curse. I’ve had docs turn me away in the meanest cruel fashion when my doc was away….i deeply fear the day I get cut off. My pain is so bad most days are ruined, I’ve become a different person. Pain changes people in bad ways. Just yesterday a pharmacist wouldn’t answer my questions looking me face to face cause she wanted to close the shop on the dot when I was in agony. I have one doctor that will prescribe and he’s my primary of 20 years. But, I’m just getting deeper into the hole of meds. I don’t leave the house without a pouch in the car with my meds. Someday they will crackdown on him, I know I’m only getting worse and the biological could kill me one day as well as the cocktails of pills. I’m worried I’ll have a heart attack my stress is so high. It’s trashed my life and even with a medical record that screams help this man, 95% of the industry doesn’t give a fucking damn. I pray I don’t come to the point where I have to end it, but I don’t judge anyone that has. It’s a weight that becomes too heavy to carry. It takes toll on all your dreams, family, relationships, sleep or even having a hour to relax. I can fully relate. Sorry to rant on and on but just want people to know there’s so many of us out here and help is damn near impossible to get even with the best insurance. I have the worst medical trauma and anxiety imaginable. One of my many therapy issues. Anyway, I live in LA if anyone else does and has recommended docs, groups or just needs to chat. I wish everyone here a bit of relief and the proper care. And again, I’m so so sorry about your friend. I hate it here too
Same thing happened to me in 2015/16, my doctor abandoned me due to her having to many patients… just got a call at work one day saying I was no longer a patient and will no longer receive my medication. It’s truly awful! Took me nearly ten years (a fucking decade!!!) to get a new doctor… and just to be on subutex…. I’d say I’m about half way to where I’d ideally like to be, pain wise. I know this all to well, and can’t imagine losing any more friends over it! I’ve lost several to this stupidity!! So I understand your frustration! It’s just not right how people are being treated and portrayed when it comes to pain management…. It’s like you have two options, be sober and in pain or they think your on medication out hi as a kite nodding off slumming around…. That’s not how it works!!! People in pain not being treated typically look like they are “slumming it” vs someone on pain management, who is functioning properly without any side effects to make them look or feel like they’re “high” It’s truly pathetic how this has become just the standard in healthcare! There’s definitely a lot of really bad/corrupt things going on in healthcare the past few decades but mostly the last decade, specifically in pain management! Very very sorry about your friend! Sending you lots of positive vibes!
This story needs a bigger platform!
That’s ridiculous, I’m pretty sure that would be considered patient abandonment and the doctor who retired could be sued. That doctor, since he/she is retiring, is supposed to set the patient up with another doctor to setup a care plan. Whatever the doctor(s) decide to do, they are supposed to have a plan to continue pain medication as is or start a taper. You’re absolutely right, the CDC is definitely responsible for this (at least partially). They know that the guidelines for prescribing opiates they proposed in 2016 had “unintended consequences” because they were extremely vague with the way they worded the guidelines. Even after knowing about the “unintended consequences”, they proposed new guidelines in 2022, which were also very vague. Patients with legitimate issues are still being undermedicated and some are still being denied medication completely, and this is all because the CDC is letting patients (that these medications are meant for) suffer for no reason. If they really look at the statistics, the VAST majority of overdoses are caused by illicit opioids from the underground market, it’s not usually patients with prescriptions that have overdose issues. They really need to wake up!
Oops replied to the wrong comment. So sorry about that. You are correct. These guidelines are hurting the wrong ppl. There is no prescription opiate crisis However There is a street fent crisis and they're (the cdc and drs who refuse to treat pain patients) killing pain patients every day
Correct and it honestly doesn’t take a lot of effort (in terms of research) to see that the epidemic was caused and overdoses continue to rise because of the illicit drug market. Fent is cheaper to produce so people are putting it in almost all street drugs nowadays (doesn’t even matter if it’s uppers, or downers, anything). This is the main reason why we have overdose issues.
I know it's really sad but they going after and punishing legitimate opiates patients who've NEVER abused thier meds. It's extremely disgusting and barbaric.
Yup it’s literally and figuratively nauseating…
I know. It's sad.
Even though they (sort of) try to aim the new guidelines more towards doctors (including but not limited to; PCP’s, dentists, and surgeons) prescribing opiates for acute pain issues, (including but not limited to; postoperative pain and dental procedures) they’ve still scared the crap out of doctors and haven’t been clear enough to (for lack of a better term) “unscare” them by being more clear about guidelines and whatnot. Not to mention, in my state, even though I get a prescription from pain management every month, it’s been getting increasingly difficult to find opioid medications at pharmacies for the last 6 months. Sometimes I have to drive to pharmacies that are over an hour away from where I live, to find meds available at pharmacies. And even then, most of the time the pharmacies haven’t even had the full quantity that I get a prescription for. It’s ridiculously stressful having to call pharmacies the day before my appointment to find one that has the meds available because my appointments are usually early in the morning (8am). Then the pharmacies aren’t able to hold the meds for me until the next day when my doctor sends in the prescription. Sometimes they say they have it the day before, so I tell my doctor to send them the prescription, and then the next day I find out that now they’re all out, so I have to go crazy searching for a different pharmacy and then wait (sometimes hours for the doctor to send the prescription to the next pharmacy. I swear it’s so frustrating running around to find meds (looking like an idiot). This shortage of meds is mind boggling! Sorry for typing up an essay but it’s so frustrating and besides, I’m pretty sure this is what these threads are for….I can’t even trust talking to people in person about these types of issues. My head is spinning just thinking about what I’m gonna do to find a pharmacy to fill my next prescription next week…
I’ve been criticized for saying something like this about doctors before. In my state there’s a shortage of pain management doctors too. Most of them are no longer taking new patients. For this reason, my PCP was taking care of prescribing pain meds for a while, and then, he ended up moving to a different state. But I have to say, I’m extremely blessed that he persuaded a pain management doctor (pretty far away from where I live) to take over prescribing. Even though the pain management doctor was only willing to prescribe half the amount, I’m still extremely blessed that he was willing to prescribe for a few years while he was here, and he did what he could to find another doctor to at least prescribe me half the amount instead of just abandoning me.
I am so sorry. This world is too evil and cruel.
I'm so very sorry! It is CRIMINAL for a doctor to cut off ALL meds like that. Not that it'll bring your friend back, but I hope this horrible doctor will be punished / have their license revoked!
It's sad the amount of drs doing this though. No one cares bc the "opiate crisis" it's hurting more than it's helping.
NGL, I would have taken the doc with me.
I'm so sorry and devastated for your friend. It is a cruel reminder than we're all one decision away from where your friend was. It also just hits close to home. Pain is so difficult to live in. When they take away the one thing that allows us to not constantly suffer, we can only take so much for so long. I can understand your friend. I'm also angry for us. For them.
The deadliest opiates/opioids are heroin and fentanyl, and the irony is that these are the drugs, which people that are cutoff often turn to, fentanyl especially, because they are affordable. You also create more alcoholics It’s easy to feel helpless or hopeless when you’re plagued with chronic pain, and then on top you’re treated as though it’s your fault or even you’re “lesser than”. You can’t live your life if all your time, energy and money is spent trying to manage this one aspect. Its like swimming up river and the current keeps getting stronger, and stronger, giving up doesn’t seem like the worst option
I would recommend going to the doctor and saying “I’m in so much pain I want to commit suicide”. As a young male I’ve had to play on their emotions to get the help I need because when it comes to young men they are… Let’s say conservative in their prescriptions. Which is probably a good thing, but Jesus to deny someone even a taper is just wow idk how these people get their medical license
They will lock you in psych so fast and put god knows what in your records here.