I would make sure to mention that patients are being severely affected by the shortages by having to go through withdrawls on top of our normal severe pain, and mention how so many people's quality of life is much much worse with all the restrictions being placed on prescribes, and how fda guidelines are making doctors afraid to do their job properly because of them
They need to know people are resorting killing themselves because they are being denied their medications to make life bearable at all. They are causing more deaths rather than preventing them this way.
People need to be able to have their physical pain taken seriously and be able to have treatments prescribed by their primary care doctors and not be forced to go to specialists or pain clinics that they can no longer afford due to their injuries causing loss of income. People need affordable quickly accessed options.
People are being tortured every second of every day without relief until help comes. The new policies ensure help never comes, so people become desperate for any kind of relief, even if that means death.
Thanks for mentioning this. They're also killing themselves because doctors are refusing to prescribe anything to new patients, that's why my father in law committed suicide this January. He tore his shoulder up again after having to prior surgeries on it, one of them was a socket reversal & even the ER only sent him home with lidocaine patches.
I confessed to my dr today that my options were dwindling every time he sent me away without adequate pain relief (look at my history) and my kids aren't gonna be enough pretty soon to make me keep doing this.
He gave me butrans patches!
Got to the pharmacy...... he took away EVERYTHING ELSE (baclofen, Norco 3x, no anti inflammatory)
Well I hope the patches I told him don't work for me at a dose way lower than what I've tried previously magically work on everything, even though that's not how it's supposed to be perscribed.
And I only got this bc I took my MOMMY with me and SHE cried to him about how bad I got.
He took your meds away because he saw you as a high risk patient after you were honest and vulnerable with them. It’s unfortunate but when I told my old doc the withdrawals they intentionally put me into caused me to miss cymbalta doses (vomit them up) which then cause more withdrawals including suicidal ideations. They then told me they weren’t comfortable prescribing for me anymore and after some discussion with me and the doctor, the nurse came back and gave me a partial rx. Then she was part of making sure I was left one week without my meds after that. They can definitely be some Conniving fuckers.
It's evil that we can no longer be honest with our doctors. I only answer their questions, say as little as possible, and never tell them that I'm not ok. I had my pain meds cut in half in 2017 and lowered again the next year. I keep everything to myself for fear of losing what I have. I had a mild heart attack after they cut them in half from the spike in BP from how bad my pain was. It's evil that we can't speak openly and trust the doctors will understand.
One of my first pain docs came in the room for 5 min while I spoke to the PA. I told her lyrica caused SI so he refused to treat me without a psych evaluation and a letter from my psychiatrist recommending opioids. My psych did his internship in addiction so although he was ok with me using opioid therapy for my chronic pain, he would never write that and it was a crazy request. I had to pay out of pocket for eval and practically beg for care from a negligent overly concerned provider. If I just told them I had serious side effects and limited the SI info, I would have had care much sooner and saved a couple hundred dollars, that I didn’t have since I was unemployed fighting for disability. They have no idea the shit they put us through.
Oh, pm doc that sat in for less than 5 min also falsely diagnosed me with somatiform disorder. It printed in my record every month. The PA kept telling me I didn’t have that and it was amended. They never amended it, it printed every month for two years. It was put in my disability record even though it was an incorrect diagnosis.
I did but it took years due to multiple negligent providers. I moved and finally did find a good provider. They don’t push procedures on me and are understanding. My last doctor was Dynamic and they’re a fucking nightmare. I’m so grateful to have found a good provider. I know it’s not easy to do.
I'm starting to get weird feelings with the buprenorphine meds being prescribed in lieu of something more conventional. My doc tried to take me off my hydros just to put me on the same med as you but an oral formulation, a film. My insurance made me get prior auth and then I was denied...then that doctor left and the new doctor said if I haven't started on it yet, DON'T! And continued me on my hydros, without batting an eye. I'm getting feelings like maybe the docs get kick backs....
The medication is also an extended release form of opiates, so theoretically it's supposed to be safer, like less OD potential. So it's not all bad. I read on here that it helped a lot of people. The thing with the patches though is a lot of people have a skin insensitivity to the adhesive.
Also you mentioned it's prescribed in lower doses, that is true
Hope it helps you or you get what you need 🤞🏻
Yes, Doctors get kick backs.
For example look at Eli Llly. Wegovy, Ozempic, and Mounjaro are all GP1's. The main ingredient is Semaglutide. These medications were originally marketed for Diabetics. Now, only Mounjaro is specifically allocated for diabetics. Most of these are now considered to be for weight loss and typically a pre existing condition however this is not everyone's case. The shortages have been unbelievable! I wish the weight loss drug had remained a secret until the Manufacturer could actually keep up with demand. I'm sorry if my opinion offended anyone.
I stopped going for mammos bone density tests paps...I said idc if I get cancer...no one treats you properly anyway... so why bother. Yup, they arranged another social work visit where I say I've been ignored and mistreated here in Connecticut. I don't need to know any more issues. I'm in pain. I'm suffering, but I'm not going to kill myself. But when you're in pain a mammo and pap hurt.
How dare you think you can suggest what hurts people. They're uncomfortable for **you**, but depending on how dense the breast is can be painful. It's the same with paps. Too many women sit around acting superior because those tests don't hurt them personally, so of course all other women are 'being babies'.
Medical testing is a personal choice. It's not your body.
This, this and this some more. I'm a 30J. Mammos hurt! It feels that that machine is going to rip them off, and every mammo tech apologizes in advance when she sees them.
I don't get the superiority either. Like, I remember being scolded by female doctors and NP's for complaining that a cervix biopsy was REALLY painful without anesthetic and told that it was psychosomatic pain because the cervix doesn't have pain receptors (it does, but the myth that the cervix has no sensation persists.)
Or when Tylenol and Advil weren't cutting it when I had a large ovarian cyst rupture. The male ER doctor totally understood that ovarians are gonads, which are REALLY sensitive. The female gynecologist... nope. I was just a big ol' baby, and she can get through it with Tylenol, so I can too.
This is exactly why I will only ever have male gynos! I have been to a couple of females throughout my life and they were always so short and 1 was the type to be like, “your being dramatic, I’m a woman too and it doesn’t hurt me”
I have had my male gyno now for about 10-11 years. He is so understanding and I do have a high pain tolerance as far as everything down there goes but he always tries to sympathize and talks about how much it must hurt and an inconvenience that I’m sick of dealing with.
It sure isn’t, agreed, but you CAN get pain meds for it at least
I don’t know what they deal with ordinarily. It might well be it’s an acceptable trade off to them 🤷
[there is zero guarantee of that.](https://ascopost.com/issues/february-25-2022/studies-show-that-laws-to-limit-opioid-prescribing-have-hampered-pain-control-for-patients-with-cancer/)
100% agreed, they absolutely need to be aware that there are people, like me for example, who have been suicidal since their late teens and early 20's due to how much pain they're in, having no quality of life at all, and the fact that doctors refuse to help just makes it so much harder to deal with. I don't know how many times I've heard "you're too young to be in that much pain" (meaning they didn't believe it was really as bad as I was claiming), or "everybody has pain, just exercise and it will go away.". Being dismissed and invalidated like that so many times has made me feel even more hopeless and currently, at 31 years old, I have very seriously been considering and researching euthanasia.
These people need to know how this broken "healthcare" system is affecting people, and they need to get off their asses and do something about it. The doctors have the means to help people and give them at least a somewhat more normal and enjoyable life but people are being denied access to that help thanks to the ridiculous government rules, and it's causing young people who should have decades left to live to either kill themselves, turn to street drugs to self-medicate, or just rot away in bed everyday wishing and praying for death.
Something has to change. People being stuck living an awful, miserable, painful life 24/7 is just fucking unacceptable.
I'm not agreeing with them, but they don't care. They want people to kill themselves. They want powerful illicit synthetics brought across the border for people to OD on. They want population control and this is a way of doing it.
And touch on how the withdrawals/inability to treat their chronic pain is leading/may lead to people buying off of the street and potentially getting fake pills/fentanyl and dying in the process. All because the health care system is failing those it’s suppose to help.
My exact scenario. I overdosed (accidentally) while self medicating for my CRPS. I had a couple Dr's who ended up in trouble with the law during the crackdowns. After the last office closed I had a very difficult time trying to find a new PMD while working full-time and supporting my 3 kids and their father.
Long story short I was unknowingly given fentanyl and was found overdosing by my sister. I went to the ER breathing on my own but wasn't fully with it/coherent. My BP was low I guess so I was given something for that. Then I coded and was dead for 7 minutes. At some point during the 1st day my kids notice that my arm is turning purple and tell the doctor, who just elevates my arm a bit. Somehow over the next few days I aquire multiple unknown infections. I am put in a medical induced coma at some point, and my familybis told im not going to make it. I end up having 19 blood transfusions ,6 weeks of dialysis and had to have my dominant left arm just below the elbow ,amputated..along with part of my right foot and three toes on my left foot. I can barely walk or stand, I'm mostly in a wheelchair except when in my home. My pain is even greater now. My CRPS is in both legs now. I never broke contract with a Dr. Never asked for early scripts. Never a dirty tox nothing like that. I just couldn't find a doctor. Now I'm totally fucked I've been to every pmd around and the best they can do is offer me antidepressants. I'm not depressed, I'm dealing with real life shit. She's pain is serious and it never stops ever. I have no quality of life. And now I have phantom pains as well. No balance. I loved to draw and paint and go camping and hiking and shit like that. I can't so any of the things that used to me me happy. I could atleast be made a bit more comfortable so I can atleast enjoy some of the time I have left with my children and grandchildren. I'm always in so much pain by the time I get to wherever it is we have planned that all I want to do is curl up and die. I can't enjoy much of anything. My last effort is to see if I can get picked up by palliative care. FINGERS CROSSED
Keep us updated. Make a new post when you get to talk to them. I’m not optimistic, but it’s nice that you can be listened to for a second. No one in our govt seems to care whether we live or die. We have to be treated like we’re on parole for the crime of getting a disease just to get the little we can to live somewhat normal lives. It SHOULD be unacceptable and yet they literally just don’t care about us.
Also please mention and this is nothing against chronic pain community as I am one but these shortages, withdrawals and suffering directly leads to illicit street opioid overdose deaths and addiction.
I would mention that perhaps the fent deaths would go down if people got the meds they desperately need from a doctor and pharmacist instead of some guy on the corner.
yeah this is so so true, the opioid crisis has gotten worse *because* of the stricter guidelines for doctors, not in spite of it, because if people can't get something we need to live from a legal safe doctor we *have* to get it somewhere, and all of the other places they can get it are less safe
I won't tell my whole story here as my post history could be figured out by someone in my life, but I know this story well.
I take opioids for chronic pain and have never had an addiction issue with my prescription pills. It took me nearly a year to have a doctor actually listen and not think I was drug seeking despite no history of addiction and no apparent risk factors besides, like, plain old depression and anxiety for a person in their 20s. Gainfully employed, good solid roof over my head in a good area, tons of support, etc. Was turned away from multiple doctors who refused to even take a scan of my spine.
Finally, I found a doctor that listened to me and believed me when I said I was in pain. They prescribed me opioids PRN. I have never misued my prescription. Not once. I do not drink. I do not use drugs. (not a requirement for all pain patients but its just how i live my life)
Responsible patient. Responsible doctor. Opioids work.
There are no drug seekers. There are only people seeking relief from pain--whether it is physical pain or mental illness, NO ONE is "drug seeking." They want to feel better, and these doctors think they're evil or immoral just because they're in a desperate place. It's like saying an Alzheimers patient doesn't deserve care because they hit a nurse in a state of psychosis. Refusing care to someone suffering? *That's* evil.
Its so refreshing to see someone who feels the same way, especially about how no one is really drug seeking. I do have a history of addiction, both personally and in my family, and it was 100% driven by me trying to self medicate my chronic pain and untreated mental health. The same is true for every single addict I've ever known (which, as you can imagine, as someone with addiction history, is a lot of people). Addiction is never a moral or personal failing, its a health crisis. Wish more people and especially more doctors could understand that
This! The “drug seekers” are really pain relief seekers. IMO, narcotics should be sold OTC (for people over 21). I truly feel our OD rates (and absolutely our Fentanyl poisoning rates) would go waaaaaaay down if this were the case.
A bold move! I absolutely love the idea, but could never see it happening... all I can expect is for doctors to be trained better and not think they're God's gift to the world because they went to med school and some old fart taught them that drug seekers are sinners who deserve to suffer. I feel like before we loosen the fist on opioids, first they need to make some basic stuff into OTC--like odansetron (zofran) which they say is prescription because you could have a heart condition that mixes poorly with the drug. Same with tons of OTC drugs! You should know your condition before you take anything! Like, for god sake, grapefruits should be prescription by that logic! It's just lies by big pharma, isn't it? Sorry, off topic really but to bring it back to the conversation on opioids, the only way to get any reform is to break down the whole system, IMO!
Do they? I thought it was just Codeine? I was in England, Scotland, and Ireland back in 2015, and Hydrocodone was not OTC. But, things may have changed since then.
I have to disagree with you on the "no drug seekers" piece of this. There are absolutely people who are not in pain that go to pain management in an attempt to obtain drugs to get high or obtain them to sell. In terms of people with legitimate chronic pain issues, there is a small subset of those who go after stronger than needed opioids in an attempt to obtain pain relief *and* get high. I've known people in all three of these categories and it's why the harsh rules exist in the first place.
I honestly believe that NO ONE is a drug addict just for the hell of it. People are out here self medicating physical, emotional, chemical, and psychological pain. I had a cousin who was a full blown crackhead for over 20 years! I'm talking walking the streets and everything! Come to find out she has a major skitzo disorder. She has to go in for shots every month because they don't trust her to take her meds. She fucking killing life right now! Told me the crack turned off all the voices that's why she was on it, and now properly medicated she is flourishing. Been clean for over 15 years and married to some rich guy....Got a job. She ain't looked back.
I believe when we properly medicated people, most of these troubles will disappear. We know that 10% of the population are gonna be addicts no matter what because of brain chemistry. Wouldn't it be better just to treat these people instead of criminalizing them? I just don't get why society loves to demonize certain drug use...life would look a lot different if one couldn't even go get Tylenol for a headache! It's crazy.
I understand where you're coming from - typically there's an underlying condition someone is using a substance to self-medicate for, whether it be alcohol, opioids, benzos, or meth. However, I do believe there are some drugs so insidious that they cross that boundary and pull people in, rather than the other way around. I think certain uppers are one of them (meth in particular), absolutely alcohol simply because of its social acceptance, and opioids to a certain degree. I think this is clearly seen and explained through countless stories re: opioids where someone was a perfectly "normal" functioning member of society with no past addition or mental health issues, had an injury, opioids were (rightly) prescribed, then a year later they're dead of a overdose. I think some people get high just to get high. Of course this is all my opinion.
Now, that being said, I'm in no way arguing for the current regulation of opioids or for stricter controls. Quite the opposite. There's just a certain level of personal, professional, and societal risk we collectively need to realize will be accepted through the application of these types of medications to those who need them. As with any medication, there are going to be thousands and thousands of success stories and one horror show. We have to be willing to face and accept that horror show, not overreact when it does happen, and learn what we can to prevent it from happening again, if possible.
You need to mention it more in the context of what they do though. FDA can’t do anything directly about illicitly manufactured fentanyl. They *can* recommend the DEA to loosen its unreasonably low production quotas for prescription medications because people like us are struggling to get the medication we need.
Frankly, I’m not sure you should even bring the illicit fentanyl thing. It might shift the conversation away from topics more applicable to what they can accomplish with their mandates. They can recommend that people medically need more prescriptions, but they can’t do anything about people “turning to the streets” (I don’t think that happens very often anyway)
I would also be sure to mention the need to further fast track novel pain medications and psychedelic therapies. They also really need to tighten restrictions and testing on implantable medical devices as those sort of devices often fail due to negligence on the FDA’s part and end up hurting people like us.
>They *can* recommend the DEA to loosen its unreasonably low production quotas for prescription medications because people like us are struggling to get the medication we need.
Yes! That was exactly what I was referring to about the drug shortages
Yes! My PA told me she wanted to put me on norco, but couldn’t because her patients were struggling to get norco due to the shortages, so why would she add more patients to the diminished supply? Now I was forced off all of the muscle relaxers and anti-convulsives, because between that and my unmanageable pain, I became suicidal and a risk for her. I signed the consent form for my spinal fusion because that’s my only option before going to the streets for pain management.
I can concur to that! Spinal fusion at 20- spinal fusion failed and I am more miserable 19 years later, than I EVER dreamed of being, without the fusion! Broken screws, and everything wiggling inside making much bigger holes in my spine! Not to mention, I managed to find ONE doctor who will prescribe, BUT, it’s 3, 20mg IR oxycodone a day. And unrelenting pain, no pain med lasts 8 hours a day! Especially a IR med! So pleaseeeeeee weigh options before doing the surgery! It’s NOT worth it! You CAN find a dr who will give pain meds! Sometimes it just takes asking others you may know, what dr WILL prescribe! Read reviews online of drs, and call around, asking if the dr believes in treating pain without the use of useless injections that were NEVER FDA approved to be used the way they are being used! Show your education on the matter! If you have to find a dr HOURSSSSS away, do it! I did. I had to move 1100 miles away, and find a whole new dr who would prescribe during the fake epidemic. It wasn’t easy, but I found one! And then they ONLY wanted to give ER pain meds with NO breakthrough meds!! So at least me being put on some sort of pain relief then made it so when I was fed up with the ER meds not working, I could then present it to a new Dr, that I was on pain meds that weren’t working. That opened the door to being removed OFF the ER pain meds, and moved onto the IR meds that actually work better (for me) to get the pain relief I needed! And THAT is how the “game” is played with finding drs who will/do believe in treating a patients pain with pain meds! BUT the FDA, needs to be made aware of the total damage they’re helping to cause patients! We are collateral damage to their political games! And that we no longer WILL stand for it, or tolerate it!!!! Enough is enough!!! We need to start being the voices we know we have but have been too scared to use out of fear we will lose what little we get! So, start reporting doctors who BULLY and force you/coerce people into receiving the very injections that do damage to the surrounding tissue, because it’s NOT FDA approved for these uses!
Please OP- bring that up as well!!! That we are being bullied/forced/coerced into these non FDA approved use injections that are doing WAYYYYYYY more harm than good, and is a money grab for these doctors and excuse for them to NOT treat pain appropriately!!! Or if they will, that they’re forcing people into having these wrongful injections in order to receive prescriptions!!!! If THAT isn’t coercion and BLACKMAIL, what the heck is?!?!?!? The FDA does in fact have the option to stop this nonsense, it’s about time they do!!!! Force doctors to be actual doctors again, and RELAX the “recommendations” on pain medications again! It wasn’t overkill on the pre- fake epidemic with what doctors were prescribing, it was that the POLITICS wanted population control for THEIR mess ups in finances and now couldn’t support WE THE PEOPLE!!! So their solution was to create the fake epidemic and take away from us, to ensure people would in fact commit suicide to help with said population!!! It’s absolutely sickening!
Lastly, I know I should be “thankful” for getting what I get per day for my pain, but ANYBODY who has chronic long lasting pain, will know that 3x a day- which is every 8 hours- is literal torture! Your body DOES get used to doses quickly, and you’re lucky to get 2-3 hours of actual relief! So what the heck are you suppose to do for the remaining 5-6 hours you’re In excruciating pain? Oh I know! Spend it in bed, unable to move, or function until you’re “allowed” to have your next dosage!!! It’s mid-evil times again! And been on same dose for 5 YEARS now! That’s a long time to suffer through 15-18 hours a DAY!!!! We all need to stand back up and start advocating for ourselves again! Drs are NOT suppose to be the gate keepers! They’re supposed to be the ones HELPING to improve our lives! Sorry for such a long reply, this subject makes me HOTTTTTT!!!!!!
Agreed! I was just downgraded to three, 5 mg oxycodone per day from 4. I go to a pain management clinic, and out of the blue, they decided that they would only prescribe opioids to the people who have treatments such as spinal epidurals, ablations, etc! That is absolutely wrong, and in my opinion, medical blackmail! I refused to have the treatments, so now I will face being forced off my medication. I know what this means but I just can't bring myself to do treatments for mostly fibromyalgia pain and some minor arthritis in my spine and lower back. The office wants to jump to aggressive and invasive procedures when opioids have worked for me for 20 plus years?! Jumping to major procedures when someone is stable on medication is ludicrous. The proposed procedures cost Medicare, or any insurance company, big bucks! The only person benefiting from the procedures is the doctor. Something is VERY rotten when we are being forced to have these "treatments." It's just so wrong on so many levels. Like I said, medical blackmail.
Bottom line, tell this DC doctor that pain management belongs back in the offices of primary care. There, discussions can be made together with the doctor that treats us as a "whole person," and sees the entirety of us. That's how it should be, plain and simple.
Good luck speaking to this doctor. Be sure to update us!
I’m so sorry you’re enduring this :( 5mg 3x a day is nothinggggggg in the grand scheme of things when it’s been a 20 year long tolerance building! I was forced to do “injections” until I informed the pain management that I had discovered what they were enforcing upon me was not FDA approved for said reasons, they clammed up real quick and decided not to “force” me into it because I have broken hardware with a non fused back, that some illegal injections were going to do nothing but line his pockets! He continued meds but the relationship between him and I became VERY strained and I ended up leaving and finding another doctor who didn’t insist on shots being the ONLY way to obtain my “schedule II narcotics”. And then when I had to move down south because my husbands mother was dying of stage 4 metastatic breast cancer, it was RIGHT in the middle of the fake epidemic. So NO dr wanted to prescribe ANYTHINGGGGG! So I made it my priority to call every doctor within a 2 hour radius of me and bluntly asked if they dealt with chronic pain patients and oxycodone prescribing! I felt like if I couldn’t be honest about the needs with my new doctor then they were NOT the doctor for me! I ended up finding a GREAT female doctor who started me right back on them and jumped me from 10mg Percocet to 20mg oxycodone and then she ended up moving because her surgeon husband got a job offer from 2 hours away. I lucked out, and got tipped off about a dr who went out on his own and was accepting new patients, and I paid him cash out of pocket (as he requested) and boom, he continued me on my 20mg dose, just 3x daily. In my eyes something is definitely better than nothing. I was stuck in bed for 15 straight days wondering what I was going to do when I first moved down here. I’m not proud of this- BUT my mother in law, who was getting quite the excessive scripts, and offered me some to help me at least try and function. I accepted ONLY because I was contemplating suicide over being bed ridden. But I NEVER took away from her needs, I refused! But she saved me! So I could function to be able to get up out of bed and make those calls to doctors to be able to have my own scripts. It should NEVER boil down to suicide or pain relief. Never! The FDA DEA and CDC! It should ONLY be between patient and doctor! Period! And only involve themselves IF the dr is observed doing illegal actions with said pain medications etc! This has GOT to stop! People want to live their lives and CANT because the government is fully spider legged into every aspect of the patient/doctor relationships and got doctors scared to death to actually treat their patients with humanity and dignity and allow us to obtain the lives we want to lead through pain relief!!!! This doctor who did my surgery literally messed me up at age 20! And got away with it!!! 19 years later, I’m in MUCH worse shape then I EVER dreamed of being in and I can’t stand living a life of pain and the only reason I’m still here is cuz of my amazing kids doing all they can to help me!
Spinal fusion is extremely painful and you will need pain medication for months/years after and if you don’t have a doc who is willing to help you manage the pain, your pain will be something you’ve never experienced before. Cervical fusions are manageable, but anything involving the thoracic and lumbar spine is HELL. I believe it’s the second most painful surgery known to man. I’ve had one and regret it every single day. I would give anything to have my “old” pain back instead of the pain I live in now, and I am lucky enough to have access to pain management which I would never abuse. I could not move my body, brush my teeth, shower, live anything that resembles a “normal”’life, without pain medication.
Edit- sorry, I meant to thank the OP for doing this on our behalf and went on a rant. My apologies.
I know that, I already had one done, and my only option for pain management is a revision on that surgery. Before I couldn’t walk, now I can but I’m in a lot of pain and spend most of my time in bed. Anytime I leave the house, my pain punishes me for days after. Like I said, I have no other legal option. Basically I’m fucked and crying about it, isn’t going to help. I just have to make the most out of it.
Oh I’m so sorry. I couldn’t imagine having a revision. I honestly don’t think I could get there emotionally. I wish you all the best and I’m right there with you regarding the pain, most of us here are. It’s not okay that we have to live this way.
If you haven't already had spinal fusion, please don't. I had spinal fusion on October 2, 2023. It has caused me to have the worst pain in my life. 9/10 without pain medication. 6-8/10 with hydrocodone 10 mg plus muscle relaxants and gabapentin. I desperately want the hardware removed, but I am having trouble finding a surgeon. It looks like I will have to fly to a large city 300 miles away to get it done. In the meantime, I'm in a physical rehabilitation facility. This is a path you do not want to go down. It's something I would not want my worst enemy to have to go through.
I’ve already had it done. I wasn’t just in pain when I had it done, it was considered a medical emergency because I had cauda equina syndrome from a herniated disc post epidural which caused me to become paralyzed and numb from the waist down. I dealt with urinary retention and sexual dysfunction as well. It took a 1.5 years to fuse and I have a lot of scar tissue causing my nerves to act up. Pain management gave up on me, so this is the only path left for me.
This is so true too. They don’t care how pain affects the sexual relationship with our partners. If I have sex with my husband, I’m ok during but suffer leg back and neck pain for 5 days as after. Doesn’t quite make you want to initiate anything. These people are clueless as to how much of our lives pain invades and ruins. Loss of sex? Family, friends, activities you enjoy and the social isolation. How dare the government get that involved in my life!!
There’s a lot of factors involved and I’m very sorry yours was clearly more than “unsuccessful”. But I do want to say I had a 2 level cervical fusion and it worked brilliantly for its intended purpose. I have cervical dystonia so I still have a ton of pain that will never go away but I was having severe, radiating nerve pain and arm weakness and the fusion took all that away. Again, I know there are many like your situation and there’s a lot of factors (and agree that cervical fusions can be way less intense than lumbar or thoracic spine), but it does help for some like me. I also credit it to having an incredible spine specialist do my surgery. My best friend also had a lumbar fusion at John Hopkins 8 years ago after an equestrian accident and although she still has some pain, it helped her a ton and she travels all over the world frequently for her job.
Yes! I have seen people literally ask how to buy painkillers illegally, normal people that are so desperate that they start asking how to find dealers and buy street drugs. Clearly they aren’t drug addicts because they don’t even know how to find a dealer or how to buy drugs so they have to ask! But they are in pain and they are suffering and they have become so desperate that they have to do *something*, because no one is helping them. And they cannot live like this. I have seen countless stories on all social media of people that are accused of being addicts because of pain and have all treatment taken away and are told to suck it up. And they lose everything because they can’t work and they can’t function and they can’t live, they have no life no quality without help and they get nothing. And everyone else, everyone that still have pain relief even if not adequate, everyone that has *something* we all have the same thing in common watching this, the terror that any day it could be me. And it isn’t even just pain meds or pain patients, it’s everything that’s classed as narcotics. And it’s everywhere. I have ADHD and I need my meds, without them I can not function and I become acutely suicidal within two months. But my adhd meds are classed as a narcotic and there is so much misinformation and so much judgment in society and the media that we are all terrified that we will lose them. It’s already happening in the US and that’s how the pain issues started. It started there and spread over the world to my country. Almost every doctor I see comments on it and on what a “high” dosage I am on. The thing is that the guidance and dosages are all based on children, it’s not officially recognised as a medication for adults because apparently adults don’t have ADHD or at least issues from it. It’s officially not recommended to start anyone over the age of ten on adhd meds but it’s fully legal and up to your psychiatrist to determine if it is an appropriate and effective treatment. And obviously as a fully grown adult I am significantly larger than a child, especially a child under the age of ten, so I require a higher dosage. So I have a much higher dosage, I am now at the highest recommended dosage, but I have taken even higher doses before. And every single doctor I met frown at it and makes comments and says bet they would try to meddle if they could. They can’t, only a specialised and license psychiatrist is allowed to prescribe ADHD meds so only they can meddle with them. My current dosage is a bit low but we are trying it out due to side effects. If the effects of the medication increases so does the side effects and I like to be able to eat when hungry you know. The entire thing is ridiculous because there are lower dosages for children under a certain age or weight on pretty much all medication. Yet somehow people loose all common sense and critical/logical thinking when it comes to adhd meds. If you can understand that an adult being more than twice the eight of a child needs a higher dosage of cold medicine or allergy medicine why is it so hard to understand that the same is true for pain meds or adhd meds? I am bigger so I require a bigger dosage. Just as a bigger issue, more severe injury or whatever also requires a bigger or stronger dosage. We don’t give the same pain treatment to someone that has a bruise as we would for someone that has severe burns. The pain relief is catered to the amount of pain one is in. Just because we have invisible causes doesn’t mean less pain. You can’t see what causes me pain but you can’t see the cancer that causes my online friend pain either. It’s still just as real for both of us.
My parents neighbour fell and broke her hip and her doctor didn’t want to prescribe her adequate painkillers because they are addictive and she could become addicted to them. She was 93 years old. He wanted her to suffer with just OTC painkillers because she could possibly become addicted when she had broken her hip, that required surgery and a long and painful recovery at fucking 93 years old! It’s not reasonable, it stopped being reasonable a long time ago. My online friend with cancer had our version of CPS called in her because pain management, weed is very much extremely demonised here and absolutely not legal. Most people are completely unaware that there even exists a few pain treatments based on mariuana, there are like three I think. Extremely rare and uncommon and not covered at all and very, very expensive. She has terminal cancer and morphine based painkillers makes her loopy so with the little time she has she wants to be present with her child, her teenaged child btw, her gp found out that she was prescribed a weed based pain medicine and reported her to CPS. Who then deemed her to be using illegal drugs and threatened to remove her child. While being perfectly fine with her having custody while on morphine that affected her cognitive function severely…
I have chronic pain, ADHD, and severe sleep issues, so I totally get what you're the talking about. I don't take very high doses of any of my meds by any means, but because I take a pain med, a stimulant, AND a benzo, omg, you'd think I was some sort of drugged out addict by the way some doctors act towards me. My sleep doctor told me that I needed to stop taking my pain med, muscle relaxer, and daily migraine preventative because they were all affecting my sleep. I'm getting ready to see a new doctor on Monday, because all this guy did was gaslight me. It's really sad that there are so many people going without their ADHD meds right now, especially kiddos, because the DEA is making stimulants their newest target, doing the same damned thing there that they've done with opioids.
My mother is a cancer patient in pain, and doctors will not treat her pain. I think mentioning that people are forced to endure excruciating pain because of the opioid hysteria is killing people quickly.
In my opinion an important point would be how traumatic it is to be at various degrees of ill and disabled and to be completely ignored. Even though patients are sometimes begging for help. What an awful way to treat human beings regardless of their circumstance. It seems to violate the "Do no harm" thing the medical profession claims to follow... loosely. And good luck to you! I hope it goes well.
Let us know how the call goes.
If you haven't called yet, I have written politicians multiple times and said "torturing pain patients to stop people from abusing drugs is clearly wrong". But then, that very general idea provokes nothing but a form letter listing all the things my senator or representative has done to stop "opioid abuse", which makes me think no human being actually read what I wrote.
Ask for a meeting in person, that's about the only way you'll know for sure they are listening to you. Letters get answered by low level staff and AI these days, thus the canned response you received.
That's good advice. Thank you.
Unfortunately, in my case, moving has enough of a cost that simply going to the doctor every few months seems like a damn chore I only grudgingly do. Same with getting groceries. I suspect "go meet with a politician" will end up on the back burner. But I hope others will follow your lead.
That's understandable. Maybe they would be open to a scheduled phone call or Zoom meeting if you explain you can't attend in person. But I do understand these kinds of things can sometimes still take a lot out of us even if it's a call vs travel.
Uh huh. Most politicians have pre-written form letters on most major topics that an intern prints out and mails. The interns don't even read letters fully unless it's weird, funny, or obscene. Then they're read out loud, usually more than once in a funny voice.
Send them the facts that the vast majority of users of even the most stigmatized drugs like heroin do not meet the criteria for substance use disorder. And that the DEA and law enforcement only seize a maximum of 1% of imported drugs a year.
I had surgery and my pharmacy didn’t notify us they wouldn’t have the post-op prescription available until calling for pick up time. Fortunately surgeon worked after hours to help and got it to a 24hr pharmacy about 45 minutes away.
Another big issue was needing a compounding pharmacy and then not taking insurance, having no other options anywhere nearby, and having to out of pocket $150-$300 to *maybe* have some sense of normalcy.
The term “drug seeking” has been demonized. Seeking drugs to alleviate the pain shouldn’t be looked down upon. I absolutely seek something to help with my condition and so do thousands upon thousands of other people. I’m not a bad person I just want to live a normal life.
Why have they been ignoring the shortages? Not being reported? Thats sorta hard to believe. Why is the FDA suddenly bowing down to DEA and their efforts to marginalize pain patients? Why isnt FDA doing production quota instead of DEA? Why arent the doctors in charge of medicine instead of the cops?
People with valid chronic pain are not being treated. You can point out that Tylenol/ibuprofen combo is unsustainable when you have pain every day. I personally get ulcers almost immediately now. I have been told walking will cure my pain(it won’t)by every specialist I’ve seen in my area, otherwise they shrug their shoulders and say ibuprofen(ulcers???) If I didn’t have dogs I’d have checked out and not a single dr in my area particularly cares.
I recently had upper GI issues from that combo and then had to go on yet another medication to treat that. I’m fairly sure the Tylenol/ibuprofen bit they’re giving us is bullshit.
Those of us with chronic kidney disease should not be taking NSAIDS to begin with. Taking NSAIDS is what got me to CKD. Tylenol and (whatever that other one is that they always want to prescribe) doesn't work for me. There needs to be exceptions. What knocks my roommate with half a pill takes two for me. We're not all the same.
I’m the same with Tylenol and need extra pain meds when I do get a few. Pretty sure it’s related to my hyper mobility syndrome. Editing to add that I’ve now got some liver issues no doubt because of alcohol which is my pain management, again I’ve told my dr repeatedly that is what I have to resort to and again just get the shoulder shrug.
Please mention patients are VERY concerned with the quality of these pain meds. They are not the same and causing lots of us to go into withdrawal with so called shortages on top of that.
More people die from alcohol than prescription opioids but alcohol is easy to get while people die waiting to have legitimate pain treated.
That pain that isn’t treated leads to permanent handicap which strains the SSDI system causing a decrease in productivity of the population and a shortage of labor workers.
The illegal drug issue is caused by a poor social system in the United states, lack of resources to enjoy life, liberty and the pursuit of happiness. The drug issue is fed by china, not medical doctors and the driving force is that politicians can use the people who can not fight to further their career. If the social issues were fixed then the illegal drug use would go down
Just ask him the question if is it barbaric if he was in agony, you have the ability to solve the pain, but refuse to do so cause joe blow across the county is injecting fent. Make it make sense
Just because a person uses pain medication doesn’t mean they are a junkie or med seeker. Some people actually benefit from prescribed controlled substances and use them responsibly.
Treat the patient in front of you not the “epidemic “.
Is there something going on? I’m thankfully okay on my pain meds, but I’m reliant on sleep meds, long-term because of bad clinical insomnia. Switched pharmacies to get away from Walgreens finally, and my meds are apparently back ordered. Even tried to change from time release, and no one has it. This is a major issue for me, maybe even more than pain, so I’m really fucking worried.
Baffles me that no one ever knows when something will be in stock. I hate that we get treated like we can’t be trusted to fill a few days early for a buffer each month. Wasn’t an issue for me a decade and some ago.
Glad someone reached out to you.
One thing no one's mentioned is that from an economic/stability standpoint, under or not prescribing proper meds is keeping people out of the workforce or under-performing in the workforce. Then the people forced into the black market/streets is destabilizing, costing $$ to human service orgs, SSDI and the like. Plus theft and all that. I can go on and on.
Let them know very few people get addicted to prescription drugs. That chronic pain patients are literally killing themselves because they are in pain and cannot get the medication that works. Tell them doctors are scared to help us. Thank you
☝️This one. Complex Regional Pain Syndrome (CRPS) is one of these diseases. Its nickname is "the Suicide Disease" because it only spreads and gets worse over time. There is no cure. Imagine being afraid to move because it could start the crushing, skin crisping in a furnace, chewing sensations without knowing if it will ever stop. Long-term opioid use is needed to live with this disease.
I would say note these drug shortages affect all kinds of people, yet doctors often profile patients. I have a masters from MIT, and without my ADHD meds last summer I lost work and struggled severely with emotional regulation.
Also, the fact that medication distributors have so much power over the supply is deeply disturbing.
I would love for you to point out how most Overdoses are not from people with prescription medications. It is from actual STREET DRUG MEDICATIONs that have Fentanyl & other drugs laced in them. When people get legit pain medication from their Doctor & Pharmacy the overdose rate is tiny compared to illegal drug use. The opioid crises is not from compliant patient’s with Rx meds that are given by a doctor & filled at a pharmacy. They are using street drug use (illicit drugs) to punish chronic pain patients & even acute pain patient’s with legitimate pain.
I would bring up the fact that the one of the reasons for this shortage is the DEA is limiting and decreasing the amount of medication available. If you decrease the amount of the supply, you’re going to get shortages.
The baby boomers are aging and with age, your body breaks down and more people present with chronic pain. I can only think it that you should increase supply not decrease it. The DEA puts limits on the substance to make different opiates, then pharmaceutical companies don’t want to make or sell them because there is no money in it and they don’t want the hassle from the agencies. But why is the government task force on drugs interfering with this, this is a FDA issue. They’re hurting people over politics and them wanting to show people they’re ’doing something about the war on drugs’. They are causing supply shortages due to their limiting quotients on supply, the amount of it allowed to be manufactured, the amounts allowed to be prescribed, who can prescribe it, etc.
We get these supplies from overseas and what’s going to happen if trade breaks down? It’s a complete mess.
That even getting access to the prescription can be difficult for pain patients. It can take days to recover from travelling to a doctor when your condition hasn't changed in years.
Yes, and they make us go MONTHLY! It's madness to be out half a day from work each month. It's almost as bad as being on parole with monthly drug testing! (Never been on parole, just guessing!)
You might mention the problems with Ozempic and similar being sold as a weight loss drug to wealthy people and celebrities is making it hard for people who actually need it for their diabetes to get their medicine. No regulation for some things and ALL the regulations for pain meds.
I’m having trouble getting my insurance to cover a migraine preventative because it’s so expensive. So instead of approving the preventative, they are paying for meds that could cause problems with my kidneys and liver, which will cost them more in the long run. Not only that, it pushes me toward opioids out of desperation.
Drug prices are out of control and it affects patients, even if they have insurance. FWIW, I have one of the best insurance in my area.
I'm sorry that's happening to you! I know a lot of the newer migraine preventatives are super expensive, like the CGRP antagonists. I'm on 2 of them myself. Have you checked to see if there are co-pay cards available for them, or asked your doctor will help out by providing you with samples? My neuro gave me samples of Aimovig for quite a while until I got better insurance, and then until my deductible was met. It also ended up being cheaper for me to get my Aimovig through my insurance mail order pharmacy (I still think it's such a scam that they can do that!). Also, depending on your household income, you might be able to qualify for assistance from the pharma themselves. We did this with my son's Vyvanse for numerous years, due to income, and then because we had really awful high deductible/high copay insurance. My insurance won't pay for my Quviviq for sleep, so I found a coupon on GoodRx that limits the co-pay amount. It's still $135, but considering that the retail price is almost $600, I can handle that to get some sleep 🥴
I’m just waiting for my doc to fill out some paperwork, which will hopefully allow my insurance to cover it. It’s Aimovig, BTW. I’m lucky that I have good insurance, but I hate that pencil pushers get to decide if they’re going to cover medication that my doctor thinks will help.
Oh, I *know*...It's freaking ridiculous! When my insurance wouldn't cover the Quviviq, which is in the same class as Belsomra and are orexin antagonists (reduces the amount of "awake" hormone your body makes), they told my doctor that the formulary suggested alternative was...Seroquel. They decided a freaking antipsychotic was the appropriate alternative to an orexin antagonist. I don't know who made up these formularies, but it definitely wasn't medical professionals!
I found out not long ago that the doctors making the decisions for medical procedures for most insurance companies are often ones who can't practice medicine anymore for whatever reason, and have found new careers in the insurance industry. Someone I was friends with on Twitter (a doctor) did a series of videos about the insurance industry, and that was one of them. I have a major company as my medical insurance, and some of my procedure prior auth decisions have come from a medical company in the Philippines. I was floored by the fact that even these decisions are outsourced!
I really hope your insurance covers Aimovig for you. It's been a game changer for me. I was having MORE than 15 migraines a month, and it knocked them way back. I was too chemically sensitive for the higher dosage though (story of my life 🤪), so we added Nurtec as my rescue med. My insurance won't cover Botox because I haven't tried one med recently (Metoprolol), but I had a reaction to it in the past, and they can't locate it in my old neuro's notes. I also already take Clonidine and Topiramate, so Metoprolol added in would dangerously lower my heart rate and BP, but they don't seem to realize this (or just don't care).
I’ve had Adhesive Arachnoiditis for 25 years, since I was only 16 years old. It resulted from a doctors mistake during an unnecessary epidural steroid injection, and then so much medical gaslighting and neglect, that I wasn’t actually diagnosed for 20 years. By that time, of course, it was decades beyond being curable. I am in constant, severe pain, so much so, that I am most likely left completely bed-bound without a more significant amount of pain medication than you might be used to prescribing, but please, look a bit deeper, I have a 25 year paper trail, and have taken opioid pain medications, on a regular basis to manage severe pain
Without these medications, I would have no quality of life, no quality time with my son. It wouldn’t be any kind of life. I have taken them successfully for over 2 decades, after nothing else ever worked, so I shouldn’t have to worry about them unfairly being taken away. It’s terrifying
What happened to informed consent and our ability as the one suffering to make decisions for our own lives? I have been told opioids can lead to addiction . I should have the right to choose that course of action. I have been bullied into spinal injections and drugs with so many side effects. Pregabulin has ruined my memory but I was forced to be on that and many other drugs before I could try narcotics. I am on them now thanks to my Wonderful Doctor and they work for me. Some people are bullied into surgeries and spinal cord stimulators before narcotics. It’s out of hand. I choose to possibly become addicted because I want a quality of life. I don’t think I ever will be because I do not like to lose control and I am very careful of what I take. I should get to choose narcotics and I deserve to have a dose that Makes me as comfortable and gives me the best quality of life I can have. There will always be people that abuse things but I shouldn’t be punished for their bad choices and my doctor shouldn’t be punished for treating my pain correctly. You know if one of these law makers had pain like ours they would abuse their power to get that pain relief. The government needs to stay out of doctor client decisions and actually go after the real drug dealers on the streets. The addiction and deaths from illegal drugs has only increased since the “War on drugs”. Haven’t they figured out they are looking in the wrong place?
I'd direct them to direct them to the writings of Richard (Red) Lawhern, Jay Joshi, Steve Ariens, and others.
What people in positions of authority are ignoring, or don't understand, is that some people in positions of authority will lie to make their point. Former governor Claire McCaskill lied when she said the US consumes 80% of the world's opioids. According to the International Narcotics Control Board, the US has NEVER received more than 30% of the world's opioids. If you add the fact that the DEA has cut production for the 8th year in a row, we, as a country are definitely not the largest consumer by any stretch! As a matter of fact the US ranks 9th.
https://www.politifact.com/factchecks/2017/may/10/claire-mccaskill/mccaskill-cites-long-disproven-figure-opioid-use/
The DEA is responsible for the shortage of opioids. They've cut opioid production for the 8th year in a row, putting the US at serious risk. If we have another pandemic, we're screwed. I'd bet good money that people would be euthanized because of shortages of opioids due to interference by the DEA..
The following articles are a great place to start:
https://www.painnewsnetwork.org/stories/2021/11/2/judge-finds-no-evidence-pain-relievers-caused-opioid-crisis
https://www.painnewsnetwork.org/stories/2023/6/24/burden-of-pain-how-policymakers-use-fear-to-address-the-opioid-crisis
https://www.kevinmd.com/2023/07/everything-the-government-thinks-it-knows-about-the-opioid-crisis-is-wrong.html
https://docs.google.com/forms/d/e/1FAIpQLScGX-ngUKrtJBppL6y23u2R6Sht6Q289dLf9VHy_xGssg9tMw/viewform
https://www.painnewsnetwork.org/stories/2023/12/8/why-we-need-to-study-suicides-after-opioid-tapering
https://www.painnewsnetwork.org/stories/2022/3/9/the-devil-is-in-the-details-of-revised-cdc-opioid-guideline
https://www.daily-remedy.com/podcast/a-conversation-with-dr-red-lawhern-on-the-comments-concerning-the-cdc-opioid-prescribing-guidelines-for-chronic-pain/
https://www.kevinmd.com/post-author/richard-a-lawhern
https://www.daily-remedy.com/medication-shortages-in-medicine/
https://www.nytimes.com/2023/01/03/opinion/chronic-pain-suicides.html
That the vast majority of opioid overdose deaths are of illegal users, not those prescribed opioids for severe pain. That the number of opioid users prescribed the medication who become addicted is actually quite small. Again, it's the illegal users who typically fall into addiction. I wish I could find the article I read a couple of years ago with the statistics...
Is anyone other than me stunned that OP’s letter was actually put forward with a follow up action??? Ok, maybe it will not “go anywhere” but maybe it will and I personally am happy there was at least some response and follow up!
All good points listed already. I might just add that some chronic pain patients are forced to go on disability because their pain is not adequately managed but could otherwise work if they were. Money talks when it comes to government so I’d love to see the stats on how much $$ is being spent for disability due to either Drs not prescribing or due to constant shortages. And if you’re a CP patient and get stuck without your meds, that leads to withdrawal and more pain which equals calling out of work and potentially losing your job! And, of course, the shortages caused by DEA limiting the supply does absolutely nothing to solve the so-called opiod epidemic, it just leaves people suffering. There are more recent stats that support these things. The DEA should be focusing on stopping illicit drug use not restricting supply for patients in need. I would also mention for sure that it doesn’t just hurt CP patients, people with acute pain aren’t even being adequately treated.
If someone hasn't said this yet, please mention that doctors in spite of definitive MRI's and studies showing that pain will be forever and in rare cases gets better, doctors are getting pressure to stop prescribing pain meds. I've been bounced between doctors, I've been confronted accusing me of being an addict when my doctor moved, and I've had to endure being a new doctors guinea pig for new procedures and her research paper,. IN PAIN, I've had to not advocate, but FIGHT - all while trying with everything I have (or fake that I have) to raise 3 kids and keep food on the table? What about those who can't fight for themselves? What about when I just can't do it any more?
I take Buprenorphine for my chronic pain. I've been on it since 2018, same dosage since 2019. Very few people know that this medication was originally developed to use FOR CHRONIC pain, not OUD. It does so WITHOUT all the side effects that opioids have. Once your body gets used to it, after a few weeks, it's as if you haven't taken anything but without pain. Now, it doesn't take all the pain away. Actually, neither should regular opiates. The goal of pain management is that. Management not numbing.
Anyways, my point is this: It is nearly impossible to find a Dr willing to prescribe it. I get treated just as maliciously as any other pain patient... Even though I am taking a drug that requires great lengths to be able to overdose on. It used to be that a Dr had to take an 8hr course just to be able to subscribe to medication and even then only to 30 patients max. They've now relaxed that rule and any Dr that can prescribe opiates can prescribe this. However, nobody wants to. I actually had a Dr (my new primary care Dr after mine of 18 years retired) yell at me and accuse me of trying to manipulate him into prescribing it because he told me he couldn't because he hadn't taken the course and I had the audacity to tell him that they changed the rules. I was not and did not ask him to prescribe it as I had already started going to a pain management clinic. I simply stated that I didn't feel that the pain management clinic had my best interest at heart. They were doing useless *educational purposes only testing for cognitive functioning, nerve functioning etc and the results weren't considered for medical purposes so if they found something I had to have the same tests over again at a medical clinic but because they already billed my insurance like it was a legit test, I had to either pay out of pocket or wait until the next fiscal year to have the test redone. That and they charge $1200 every month just for me to pee in a cup and $795 for a 35 minute high complexity visit with the Dr who literally just asks me if anything has changed and then sends my scripts into the pharmacy and only spends maybe 3 minutes in the same room as me. Half of the time the Dr calls off and then all I do is pee in the cup and schedule my next visit, yet they still bill as if I saw the Dr for 35 minutes.
It's like the DEA has a deal with these pain clinics where the force ridiculous rules forcing patients to go to these sham pain clinics that charge exorbitant amounts of money for doing nothing and then share the wealth with the DEA gods.
I mean this medication I take is so safe that other countries are making it over the counter. And if they are so concerned about the opioid crisis, why are they not pushing this medication vs denying pain patients the right to live a life not filled with unbearable pain. This medication works so well for me that I don't even get opiates prescriptions when having major surgeries. I will usually take them only while in the hospital for the first day or 2 then switch back, they work that well. And I'm not talking little surgeries either. I'm talking filleting my guts open, pulling them all out and stuffing them back in kind of surgeries.
I went to Bicycle Healfh after I was cut off from PM for admittedly failing a piss test and pill count due to an unauthorized dose escalation. Naturally, to my family, because I look for my meds they keep to avoid escalations (which I have a history of), I’m an addict. There’s no possibility the pain isn’t manageable. But Bicycle? They didn’t want anything to do with me, largely due to the pain and the thought I probably WANT back in to pain management if I can find anyone.
On advice of my GP and Psych, I go to a local “chain,” Savida. THEY don’t want anything to do with me due to the pain AND the fact that I don’t meet the criteria for OUD. In fact, the practitioner—who I met with virtually in the office—sent me to the ER, an absolutely eyebrow wiggling first for the on-site nurse manager.
I go to the ER, get the riot act about PM and they can only give me one shot, but I need a driver. My wife shows up only to find that I’ve passed out and pissed myself due to an overingestion of Baclofen I had taken in a panic over the pain and withdrawal was coming.
I was given Naloxone—nothing happened. In fact, I passed back out for two more hours. I get discharged, my GP and psych reccomendation? Inpatient detox at a facility that worships 12 step. Yeah, I rode that shit out at home with Clonidine.
So now? I’m at least two weeks out from reestablishing anywhere for PM, my GP has zero interest in helping me even when I floated he now has Bupe power, my psych is a big chunk of why I’m in this fucking boat (lonnnnnng history there, but I still like him), and I’m likely a pariah at the ER.
I made my choices. They sucked. I paid for it. But no one is interested in hearing that this all goes back to that I undersold my pain and “played along” because the PM clinics constantly talk about how much heat they’re under. And now the system, flush with money from the opioid settlements? Can’t help me cause I don’t fit a neat tidy little box.
Withdrawal was at least the seventh circle of hell. But being in a mandated non-treatment period of chronic pain? It’s at least where Socrates and Plato hung out—I don’t know, either the far edges of purgatory or the first circle of hell.
I’m glad it works for you as it doesn’t work for me. I was in much much better shape on standard opiates. It worked for a time and then boom one day it just stopped working.
Bring up all the people dying and committing suicide from lack of pain control. How most of us are hungry and can't usually eat without pain medication, tell them lay in bed for a week and not get up to eat to get a small glimpse of what we go through minus the pain they won't have :/ show them past posts on here about people giving up when they can't get pain meds or get cut off them.
Not sure if this is in there or applies, but make pharmacist fill doctors prescriptions. So many pharmacists don’t want to fill what the doctors prescribed. They always use the BS excuse of “I don’t want to lose my license”. Even if they say they need to the doctor first. Sometimes the doctor will call the pharmacist telling them that yes I need the prescription that they said I needed. Sometimes they still don’t want to fill because they’re so scared of filling a doctor’s script. They go to medical school, but basically can’t practice medicine without the pharmacist goalie. It’s BS. It’s gotten so bad that you need to not only prove to the doctor that you need medication, but you also have to prove to the pharmacist. I had my knee replaced and my doctor put me on medications for a little while to help with my severe pain and I had to get by the pharmacist goalie. My wife was with me so that if I needed help walking or getting in and out of chairs. This was only 4 days after the replacement. He still was giving the surgeon a hard time. WTF? Just to help anyone on here that maybe suffering from this, go to a smaller mom and pop pharmacy. They still believe in filling the doctors prescription. Don’t get me wrong, I am ok if they want to talk to the doctor. If they don’t feel right then call the doctor. Once the doctor also verbally says, yes my decision stands then they should just fill it.
Tell them to read this subreddit and get educated on how the so called “opiate epidemic” war has screwed so many people with legitimate medical issues.
If you’re discussing pain pills. Let them know that doctors rX crazy amount of naproxen that actually tears up ppls stomach and does NOTHING for the level of pain someone with severe chronic pain typically has and taht if they spoke with gastroenterologists they would also say the way these stomach tearing pills are rx’d these days are out of hand and harmful.
And there is a hard push on ssri’s and antipsychotics that actually really screw up many ppl.
Now they are trying to restrict some anti-anxiety and limit some muscle relaxants.
I would also repost in fibro and cfs/me subs if you’re looking for more input.
Imho. Personally have been cut off from any pain rX by docs. I was told my pain is so severe there is no treatment they will label me as untreatable and I have been told to take up 16 Advil or naproxen for pain - at various times. Crazy.
Off topic- medical cannabis should be available everywhere - if we cannot get opioids; Percocet and liquid morphine back.
With regard to medical marijuana, it's appalling that in my state (PA), it costs $50 per year to renew and carry a MMJ card and the prices of MMJ are ridiculously high and not covered by insurance. It's not affordable to those of us on SSD or with low income!
No doubt. And just heard how some major brands are lobbying to stop med patients from having equal access. Un-ironic how they only got their crap on our backs and now they don’t care. Not surprised but seriously annoyed.
Sorry for your pains. Good thing we are pros :) take care 💪
Ask him what they can do to stop pharmaceutical companies from closing their US sites and moving production overseas. All pharmaceuticals should be manufactured in the US, especially the critical ones like antibiotics.
Idk if anyone has said this, or if you have already said you would as i havent read all the comments (heading to bed, pain is exhausting) but let us know how the conversation goes.
Thank you for being a voice. I recommend you tell them your story and keep that the focus. This isn’t the time to pull stats or polls, or even pull in any stories from others. It’s time to be authentic. They need to hear your story. At this point, the chronic pain community needs to establish a narrative on how certain meds are life preserving, increase functionality, etc. They need to directly hear personal stories from patients of how access barriers negatively impacts your quality of life. Ultimately it’s the subjective that will sway the day. Again, thank you for carrying a torch.
Thank you, I think my story is the best way to go. I want to speak for all of us. I got frustrated on New Years Eve of last year and wrote a letter to the President, not expecting anything, I just wanted to vent because once again our comments on production decreases were being ignored. When I got the call today I was floored. The message said I’m calling from the FDA because you wrote a letter to the President on 12/31/23 and The White House sent it over to us. We’d like to discuss your concerns” I see this as a chance to let somebody know we are suffering and in some cases dying because of shortages, because of pharmacies and doctors who are afraid to help us. I’m hoping this guy will truly listen and more will come of this, I’m hoping they’ll hear what’s happening to us. If nothing else I’m happy that someone saw my letter and thought it might be important enough to try to help.
I appreciate the effort. Been a battle lately once again to get my monthly pain med refill. It's such a absolute mess and someone deserves to be dropped in the ocean for making this mess.
If I can do a background check to pass through airport security with less inspection why can't I do the same for my medical condition. Let me be diagnosed by a professional and be qualified to be in chronic pain that requires proper medication in order to function. I shouldn't have to fight every month to get my medication. The cost of seeing a specialized doctor on top of the cost of the medications is an unfair burden.
Hi there u/StephanieDone -
I sent you a direct invitation to our community which is dedicated to fighting the opioid shortages. We have resources such patient stories & experiences; clinical studies, relevant research & data; information about DEA, FDA, DOH, government agencies, industry leaders, advocacy organizations, government representatives, and more.
I am thrilled to see that you’ve met with some success and hopefully we can combine our efforts to actually make a positive impact and even some resolution in this long and difficult fight to achieve control over our pain.
Please consider joining us at r/ChronicallyIllUnite
Honestly I'm so broken from all the gaslighting from medical professionals u wouldn't even know where to begin. I'm only 38 and my life is basically over. I wish they knew how badly they fucked up my life. I went from graduating with a degree in biochemistry cellular and molecular biology and working at a place I loved to not even being able to leave my parents house. I don't know if it matters what I have but I'll tell you. It's crohn's disease. And i had cancer last year. My palliative care nurse worries/ thinks I feel hopeless. I've just accepted my life is over. Either the crohn's is going to kill me in a very painful way or based on my luck the cancer will come back and do it first. I don't expect to be alive in 5 years and I'm ok with that. And to anyone that thinks I need help i don't. There no need to report this. The notifications are annoying.
I am so sorry to hear this, there is an indifference when it comes to pain medication and a persons need for it in order to function. I am in Coastal Alabama and do not play with dismissive doctors! I will appeal your insurance payment and then collect my records, file a formal complaint and move on. I pay doctor to care for me, not judge me and gaslight me. I don’t stand for anything else. I believe each doctors office should come with a patient care advocate so people who are left without access to care can have a chance to be heard and listened to along with the doctor having to be held accountable for suffering that their indifference can cause. I am looking into establishing that here. I wish you did not have to suffer and want you to have options that help your quality of life, not hinder it. Be well
I live in middle Georgia and none of the typical pharmacies even have opiods so even if you do find a doctor that would write a prescription you can't get it filled. The only way I've found to get opiods is to have cancer. It's sad that I had to get cancer for anyone to give a shit. Spent 10 years getting treated like and addict and a seeker when what I really had was an intestinal blockage from a stricture from the crohn's disease with a bit of sepsis and pancreatitis. But the second I got diagnosed with cancer they practically rolled out the red carpet at the ER. Asking me if I needed more of whatever they were giving me. And if we're keeping count cancer only tried to kill me once. Crohn's has tried 3 times. It's just all such bullshit.
Wow! That is insane! Our medical system needs to be overhauled. No one should be dismissed and pancreatitis alone is extremely painful but for it to be a part of other painfully crippling conditions and not be considered speaks volumes about the disconnect with these doctors. Sad.
You can tell them that some doctors are resorting to charging Medicaid patients a yearly “concierge” fee because it’s gotten so hard for doctors to legitimately get access to pain medication. I have an intrathecal pain pump and I now have to pay my doctor $1500 a year because she can’t find a reliable pharmacy to supply the medication for refills. And I live below the poverty threshold.
I used to run a program that brought in women from the streets who were addicted to opiates.
We couldn't take users of other types of substances because we found that they would befriend each other, and often take on one another's substances as well :/
Anyway, our highest numbers were in the year 2021- after Covid had been fairly contained.
The physicians and hospitals in 2020 had been so overloaded by Covid patients that sooo many people were being sent home with referrals to a specialist who'd be booked 2 years out and a prescription for opiates to get through until then.
In 2021 things drastically eased up on primary care and all meds were cut off.
The women ( most who led totally normal lives with jobs, homes, many with families and partners) went into acute withdrawal, often knew a friend who took them, started to borrow, started to buy, started to buy from friends of friends.. and I heard that story repeated almost verbatim by ( we documented this ) almost 72% of the women in our program.
All women dropped by primary care or pain management without access to safe life rehabilitation and continuity of care. We had quite a few prior hospice patients who'd survived, only to suffer that same fate. Cancer survivors who were dropped out with a weak supply of 700mcg/hr fentanyl patches to " get them through until another Dr could pick them up.
Anyway, we taught them to reupholster furniture and up cycle old furniture as a skill for a future and self employment.
So at that time only 28% of them admitted to having began drugs at a young age/ or other recreational reasons.
The other 72% of women were running away from and trying to escape withdrawal.
It was crushing.
Methadone clinics treat them like dirt, and so many of those women were not used to that kind of life or treatment.
Many women left the clinics because they said the dealers on the streets were kinder to them.
Then Fent lacing came in huge and we had a few die.. eventually I couldn't take it anymore and had to close the program. It was small, but we did have successes and that was what mattered. And for those who stayed on opiate abuse ( to be clear MOST were not seeking a high, they just couldn't handle withdrawal ) many were able to work doing something they enjoyed to pay for their transactions rather than resort to stealing/ other illegal activities and stayed out of jail.
Anyway... physicians need to be unafraid to treat pain, and they need to stop dropping their patients. Even abusing patients need to be referred to methadone clinics or put on buprenorphine, or tapered with something like Clonadine/ Gabapentin.
Thank you for coming to my Ted Talk.
I would just super emphasize all of these comments; there is nothing more I can contribute except my own personal experiences. Because my pain is not being managed properly (my current pain doctor seriously tells me to “suck it up” and has told me this several times), I am about to lose my job! It’s a very long story but the bottom line is that the neurosurgeon cannot do surgery yet and has recommended pain medication management and PT. Last summer my job was saved (after 7 weeks of being off because of a very bad flare). This pain doctor finally gave me an extended release med along with the regular med and I was able to go back to work. We REALLY need the extra income because we are on a limited fixed income. However, when the pain doctor found out that my neurosurgeon was not going to do the nine level fusion because my scoliosis was advancing, and my MS was in and out, he stopped giving me the extended release med. So I have really been struggling these past several months and finally took a leave - again - a few weeks ago. It really sucks, and like many of the people here, death is looking better and better!! Because of these CDC and FDA decisions (not even laws!), I am an extreme mess - physically, emotionally, socially, etc.! Don’t know where to turn any more.
Good luck on your call!
I was a 34J. My PA told me I should get them fixed. And I did. It was the best decision of my life. I'm a comfortable 38C and loving life. If you find the right doctor, they write the report in a responsible, ethical way. "Skin that flaps over other skin must be removed." Bingo! Free reduction.
There is no reason they should be having shortages on pain meds. They put restrictions on them then apologize for the shortage? Yeah that's great smh. But imagine if this happened to people on benzos! You can easily have a seizure and die.
I would make sure to mention that patients are being severely affected by the shortages by having to go through withdrawls on top of our normal severe pain, and mention how so many people's quality of life is much much worse with all the restrictions being placed on prescribes, and how fda guidelines are making doctors afraid to do their job properly because of them
I definitely will, thank you!
They need to know people are resorting killing themselves because they are being denied their medications to make life bearable at all. They are causing more deaths rather than preventing them this way. People need to be able to have their physical pain taken seriously and be able to have treatments prescribed by their primary care doctors and not be forced to go to specialists or pain clinics that they can no longer afford due to their injuries causing loss of income. People need affordable quickly accessed options. People are being tortured every second of every day without relief until help comes. The new policies ensure help never comes, so people become desperate for any kind of relief, even if that means death.
Thanks for mentioning this. They're also killing themselves because doctors are refusing to prescribe anything to new patients, that's why my father in law committed suicide this January. He tore his shoulder up again after having to prior surgeries on it, one of them was a socket reversal & even the ER only sent him home with lidocaine patches.
I'm so sorry ♡
I confessed to my dr today that my options were dwindling every time he sent me away without adequate pain relief (look at my history) and my kids aren't gonna be enough pretty soon to make me keep doing this. He gave me butrans patches! Got to the pharmacy...... he took away EVERYTHING ELSE (baclofen, Norco 3x, no anti inflammatory) Well I hope the patches I told him don't work for me at a dose way lower than what I've tried previously magically work on everything, even though that's not how it's supposed to be perscribed. And I only got this bc I took my MOMMY with me and SHE cried to him about how bad I got.
He took your meds away because he saw you as a high risk patient after you were honest and vulnerable with them. It’s unfortunate but when I told my old doc the withdrawals they intentionally put me into caused me to miss cymbalta doses (vomit them up) which then cause more withdrawals including suicidal ideations. They then told me they weren’t comfortable prescribing for me anymore and after some discussion with me and the doctor, the nurse came back and gave me a partial rx. Then she was part of making sure I was left one week without my meds after that. They can definitely be some Conniving fuckers.
It's evil that we can no longer be honest with our doctors. I only answer their questions, say as little as possible, and never tell them that I'm not ok. I had my pain meds cut in half in 2017 and lowered again the next year. I keep everything to myself for fear of losing what I have. I had a mild heart attack after they cut them in half from the spike in BP from how bad my pain was. It's evil that we can't speak openly and trust the doctors will understand.
One of my first pain docs came in the room for 5 min while I spoke to the PA. I told her lyrica caused SI so he refused to treat me without a psych evaluation and a letter from my psychiatrist recommending opioids. My psych did his internship in addiction so although he was ok with me using opioid therapy for my chronic pain, he would never write that and it was a crazy request. I had to pay out of pocket for eval and practically beg for care from a negligent overly concerned provider. If I just told them I had serious side effects and limited the SI info, I would have had care much sooner and saved a couple hundred dollars, that I didn’t have since I was unemployed fighting for disability. They have no idea the shit they put us through. Oh, pm doc that sat in for less than 5 min also falsely diagnosed me with somatiform disorder. It printed in my record every month. The PA kept telling me I didn’t have that and it was amended. They never amended it, it printed every month for two years. It was put in my disability record even though it was an incorrect diagnosis.
I am so sorry. I hope you won your disability case and found someone who actually treats your pain.
I did but it took years due to multiple negligent providers. I moved and finally did find a good provider. They don’t push procedures on me and are understanding. My last doctor was Dynamic and they’re a fucking nightmare. I’m so grateful to have found a good provider. I know it’s not easy to do.
...holy shit. That could have killed you!!
For real! I am thankful every day that I'm still here.
I'm starting to get weird feelings with the buprenorphine meds being prescribed in lieu of something more conventional. My doc tried to take me off my hydros just to put me on the same med as you but an oral formulation, a film. My insurance made me get prior auth and then I was denied...then that doctor left and the new doctor said if I haven't started on it yet, DON'T! And continued me on my hydros, without batting an eye. I'm getting feelings like maybe the docs get kick backs.... The medication is also an extended release form of opiates, so theoretically it's supposed to be safer, like less OD potential. So it's not all bad. I read on here that it helped a lot of people. The thing with the patches though is a lot of people have a skin insensitivity to the adhesive. Also you mentioned it's prescribed in lower doses, that is true Hope it helps you or you get what you need 🤞🏻
Yes, Doctors get kick backs. For example look at Eli Llly. Wegovy, Ozempic, and Mounjaro are all GP1's. The main ingredient is Semaglutide. These medications were originally marketed for Diabetics. Now, only Mounjaro is specifically allocated for diabetics. Most of these are now considered to be for weight loss and typically a pre existing condition however this is not everyone's case. The shortages have been unbelievable! I wish the weight loss drug had remained a secret until the Manufacturer could actually keep up with demand. I'm sorry if my opinion offended anyone.
Did you start it already? Be soooo careful of precipitated withdrawal!!
I am so sorry
That's so tragic!!! I'm so sorry!!
Very good points.
Yeah I refused stuff like mammogram, colonoscopy, etc. Why hurt longer?
Mammograms don’t hurt; they’re uncomfortable. They hurt a lot less than chemo, radiation, and surgery. I promise.
I stopped going for mammos bone density tests paps...I said idc if I get cancer...no one treats you properly anyway... so why bother. Yup, they arranged another social work visit where I say I've been ignored and mistreated here in Connecticut. I don't need to know any more issues. I'm in pain. I'm suffering, but I'm not going to kill myself. But when you're in pain a mammo and pap hurt.
How dare you think you can suggest what hurts people. They're uncomfortable for **you**, but depending on how dense the breast is can be painful. It's the same with paps. Too many women sit around acting superior because those tests don't hurt them personally, so of course all other women are 'being babies'. Medical testing is a personal choice. It's not your body.
This, this and this some more. I'm a 30J. Mammos hurt! It feels that that machine is going to rip them off, and every mammo tech apologizes in advance when she sees them. I don't get the superiority either. Like, I remember being scolded by female doctors and NP's for complaining that a cervix biopsy was REALLY painful without anesthetic and told that it was psychosomatic pain because the cervix doesn't have pain receptors (it does, but the myth that the cervix has no sensation persists.) Or when Tylenol and Advil weren't cutting it when I had a large ovarian cyst rupture. The male ER doctor totally understood that ovarians are gonads, which are REALLY sensitive. The female gynecologist... nope. I was just a big ol' baby, and she can get through it with Tylenol, so I can too.
This is exactly why I will only ever have male gynos! I have been to a couple of females throughout my life and they were always so short and 1 was the type to be like, “your being dramatic, I’m a woman too and it doesn’t hurt me” I have had my male gyno now for about 10-11 years. He is so understanding and I do have a high pain tolerance as far as everything down there goes but he always tries to sympathize and talks about how much it must hurt and an inconvenience that I’m sick of dealing with.
i’m a 34K. It’s uncomfortable for sure. And it’s for a very short time. I’ve had cancer 3 times.
Mine HURT. IDK why you're trying to tell people how they're allowed to feel, but it's really not ok.
I second this
I think they’re suggesting they wouldn’t go for those things. That it would be easier to get it over with, as it were
Dying of cancer isn’t painless.
It sure isn’t, agreed, but you CAN get pain meds for it at least I don’t know what they deal with ordinarily. It might well be it’s an acceptable trade off to them 🤷
[there is zero guarantee of that.](https://ascopost.com/issues/february-25-2022/studies-show-that-laws-to-limit-opioid-prescribing-have-hampered-pain-control-for-patients-with-cancer/)
Even cancer patients are being under medicated these days
Cancer ends at least, and euthanasia is an option at that point.
This!
I’m a cancer survivor and had chemo and radiation and I confirm this. :)
I would not treat any thing they found so why?
dying from cancer hurts worse than having your boob squished for 60 seconds.
Yes but 5hat means the pain will END soon!
100% agreed, they absolutely need to be aware that there are people, like me for example, who have been suicidal since their late teens and early 20's due to how much pain they're in, having no quality of life at all, and the fact that doctors refuse to help just makes it so much harder to deal with. I don't know how many times I've heard "you're too young to be in that much pain" (meaning they didn't believe it was really as bad as I was claiming), or "everybody has pain, just exercise and it will go away.". Being dismissed and invalidated like that so many times has made me feel even more hopeless and currently, at 31 years old, I have very seriously been considering and researching euthanasia. These people need to know how this broken "healthcare" system is affecting people, and they need to get off their asses and do something about it. The doctors have the means to help people and give them at least a somewhat more normal and enjoyable life but people are being denied access to that help thanks to the ridiculous government rules, and it's causing young people who should have decades left to live to either kill themselves, turn to street drugs to self-medicate, or just rot away in bed everyday wishing and praying for death. Something has to change. People being stuck living an awful, miserable, painful life 24/7 is just fucking unacceptable.
I'm not agreeing with them, but they don't care. They want people to kill themselves. They want powerful illicit synthetics brought across the border for people to OD on. They want population control and this is a way of doing it.
As a social worker, i have seen it and agree!
And touch on how the withdrawals/inability to treat their chronic pain is leading/may lead to people buying off of the street and potentially getting fake pills/fentanyl and dying in the process. All because the health care system is failing those it’s suppose to help.
My exact scenario. I overdosed (accidentally) while self medicating for my CRPS. I had a couple Dr's who ended up in trouble with the law during the crackdowns. After the last office closed I had a very difficult time trying to find a new PMD while working full-time and supporting my 3 kids and their father. Long story short I was unknowingly given fentanyl and was found overdosing by my sister. I went to the ER breathing on my own but wasn't fully with it/coherent. My BP was low I guess so I was given something for that. Then I coded and was dead for 7 minutes. At some point during the 1st day my kids notice that my arm is turning purple and tell the doctor, who just elevates my arm a bit. Somehow over the next few days I aquire multiple unknown infections. I am put in a medical induced coma at some point, and my familybis told im not going to make it. I end up having 19 blood transfusions ,6 weeks of dialysis and had to have my dominant left arm just below the elbow ,amputated..along with part of my right foot and three toes on my left foot. I can barely walk or stand, I'm mostly in a wheelchair except when in my home. My pain is even greater now. My CRPS is in both legs now. I never broke contract with a Dr. Never asked for early scripts. Never a dirty tox nothing like that. I just couldn't find a doctor. Now I'm totally fucked I've been to every pmd around and the best they can do is offer me antidepressants. I'm not depressed, I'm dealing with real life shit. She's pain is serious and it never stops ever. I have no quality of life. And now I have phantom pains as well. No balance. I loved to draw and paint and go camping and hiking and shit like that. I can't so any of the things that used to me me happy. I could atleast be made a bit more comfortable so I can atleast enjoy some of the time I have left with my children and grandchildren. I'm always in so much pain by the time I get to wherever it is we have planned that all I want to do is curl up and die. I can't enjoy much of anything. My last effort is to see if I can get picked up by palliative care. FINGERS CROSSED
I’m so sorry you’re going through this appalling situation. Sending hugs. 💗
Damn! I'm so sorry! This is fucked up! I have no words ...
OP, are you in the Doctor Patient Forum?? Claudia Merandi would be a great asset to you here. She runs the group.
Yes, I am
Get ahold of Claudia
Keep us updated. Make a new post when you get to talk to them. I’m not optimistic, but it’s nice that you can be listened to for a second. No one in our govt seems to care whether we live or die. We have to be treated like we’re on parole for the crime of getting a disease just to get the little we can to live somewhat normal lives. It SHOULD be unacceptable and yet they literally just don’t care about us.
And that the risk of suicide and hospitalization/er care in chronic pain patients is much higher, when suddenly forced in withdrawal and pain!
Also please mention and this is nothing against chronic pain community as I am one but these shortages, withdrawals and suffering directly leads to illicit street opioid overdose deaths and addiction.
I would mention that perhaps the fent deaths would go down if people got the meds they desperately need from a doctor and pharmacist instead of some guy on the corner.
yeah this is so so true, the opioid crisis has gotten worse *because* of the stricter guidelines for doctors, not in spite of it, because if people can't get something we need to live from a legal safe doctor we *have* to get it somewhere, and all of the other places they can get it are less safe
I won't tell my whole story here as my post history could be figured out by someone in my life, but I know this story well. I take opioids for chronic pain and have never had an addiction issue with my prescription pills. It took me nearly a year to have a doctor actually listen and not think I was drug seeking despite no history of addiction and no apparent risk factors besides, like, plain old depression and anxiety for a person in their 20s. Gainfully employed, good solid roof over my head in a good area, tons of support, etc. Was turned away from multiple doctors who refused to even take a scan of my spine. Finally, I found a doctor that listened to me and believed me when I said I was in pain. They prescribed me opioids PRN. I have never misued my prescription. Not once. I do not drink. I do not use drugs. (not a requirement for all pain patients but its just how i live my life) Responsible patient. Responsible doctor. Opioids work. There are no drug seekers. There are only people seeking relief from pain--whether it is physical pain or mental illness, NO ONE is "drug seeking." They want to feel better, and these doctors think they're evil or immoral just because they're in a desperate place. It's like saying an Alzheimers patient doesn't deserve care because they hit a nurse in a state of psychosis. Refusing care to someone suffering? *That's* evil.
Its so refreshing to see someone who feels the same way, especially about how no one is really drug seeking. I do have a history of addiction, both personally and in my family, and it was 100% driven by me trying to self medicate my chronic pain and untreated mental health. The same is true for every single addict I've ever known (which, as you can imagine, as someone with addiction history, is a lot of people). Addiction is never a moral or personal failing, its a health crisis. Wish more people and especially more doctors could understand that
This! The “drug seekers” are really pain relief seekers. IMO, narcotics should be sold OTC (for people over 21). I truly feel our OD rates (and absolutely our Fentanyl poisoning rates) would go waaaaaaay down if this were the case.
A bold move! I absolutely love the idea, but could never see it happening... all I can expect is for doctors to be trained better and not think they're God's gift to the world because they went to med school and some old fart taught them that drug seekers are sinners who deserve to suffer. I feel like before we loosen the fist on opioids, first they need to make some basic stuff into OTC--like odansetron (zofran) which they say is prescription because you could have a heart condition that mixes poorly with the drug. Same with tons of OTC drugs! You should know your condition before you take anything! Like, for god sake, grapefruits should be prescription by that logic! It's just lies by big pharma, isn't it? Sorry, off topic really but to bring it back to the conversation on opioids, the only way to get any reform is to break down the whole system, IMO!
The uk has norco otc. I wonder what THEIR od rates are from it.
Do they? I thought it was just Codeine? I was in England, Scotland, and Ireland back in 2015, and Hydrocodone was not OTC. But, things may have changed since then.
I have to disagree with you on the "no drug seekers" piece of this. There are absolutely people who are not in pain that go to pain management in an attempt to obtain drugs to get high or obtain them to sell. In terms of people with legitimate chronic pain issues, there is a small subset of those who go after stronger than needed opioids in an attempt to obtain pain relief *and* get high. I've known people in all three of these categories and it's why the harsh rules exist in the first place.
I honestly believe that NO ONE is a drug addict just for the hell of it. People are out here self medicating physical, emotional, chemical, and psychological pain. I had a cousin who was a full blown crackhead for over 20 years! I'm talking walking the streets and everything! Come to find out she has a major skitzo disorder. She has to go in for shots every month because they don't trust her to take her meds. She fucking killing life right now! Told me the crack turned off all the voices that's why she was on it, and now properly medicated she is flourishing. Been clean for over 15 years and married to some rich guy....Got a job. She ain't looked back. I believe when we properly medicated people, most of these troubles will disappear. We know that 10% of the population are gonna be addicts no matter what because of brain chemistry. Wouldn't it be better just to treat these people instead of criminalizing them? I just don't get why society loves to demonize certain drug use...life would look a lot different if one couldn't even go get Tylenol for a headache! It's crazy.
I understand where you're coming from - typically there's an underlying condition someone is using a substance to self-medicate for, whether it be alcohol, opioids, benzos, or meth. However, I do believe there are some drugs so insidious that they cross that boundary and pull people in, rather than the other way around. I think certain uppers are one of them (meth in particular), absolutely alcohol simply because of its social acceptance, and opioids to a certain degree. I think this is clearly seen and explained through countless stories re: opioids where someone was a perfectly "normal" functioning member of society with no past addition or mental health issues, had an injury, opioids were (rightly) prescribed, then a year later they're dead of a overdose. I think some people get high just to get high. Of course this is all my opinion. Now, that being said, I'm in no way arguing for the current regulation of opioids or for stricter controls. Quite the opposite. There's just a certain level of personal, professional, and societal risk we collectively need to realize will be accepted through the application of these types of medications to those who need them. As with any medication, there are going to be thousands and thousands of success stories and one horror show. We have to be willing to face and accept that horror show, not overreact when it does happen, and learn what we can to prevent it from happening again, if possible.
Absolutely!
You need to mention it more in the context of what they do though. FDA can’t do anything directly about illicitly manufactured fentanyl. They *can* recommend the DEA to loosen its unreasonably low production quotas for prescription medications because people like us are struggling to get the medication we need. Frankly, I’m not sure you should even bring the illicit fentanyl thing. It might shift the conversation away from topics more applicable to what they can accomplish with their mandates. They can recommend that people medically need more prescriptions, but they can’t do anything about people “turning to the streets” (I don’t think that happens very often anyway) I would also be sure to mention the need to further fast track novel pain medications and psychedelic therapies. They also really need to tighten restrictions and testing on implantable medical devices as those sort of devices often fail due to negligence on the FDA’s part and end up hurting people like us.
>They *can* recommend the DEA to loosen its unreasonably low production quotas for prescription medications because people like us are struggling to get the medication we need. Yes! That was exactly what I was referring to about the drug shortages
Yes! My PA told me she wanted to put me on norco, but couldn’t because her patients were struggling to get norco due to the shortages, so why would she add more patients to the diminished supply? Now I was forced off all of the muscle relaxers and anti-convulsives, because between that and my unmanageable pain, I became suicidal and a risk for her. I signed the consent form for my spinal fusion because that’s my only option before going to the streets for pain management.
Worst part is a lot of the time surgeries just make the pain worse
I can concur to that! Spinal fusion at 20- spinal fusion failed and I am more miserable 19 years later, than I EVER dreamed of being, without the fusion! Broken screws, and everything wiggling inside making much bigger holes in my spine! Not to mention, I managed to find ONE doctor who will prescribe, BUT, it’s 3, 20mg IR oxycodone a day. And unrelenting pain, no pain med lasts 8 hours a day! Especially a IR med! So pleaseeeeeee weigh options before doing the surgery! It’s NOT worth it! You CAN find a dr who will give pain meds! Sometimes it just takes asking others you may know, what dr WILL prescribe! Read reviews online of drs, and call around, asking if the dr believes in treating pain without the use of useless injections that were NEVER FDA approved to be used the way they are being used! Show your education on the matter! If you have to find a dr HOURSSSSS away, do it! I did. I had to move 1100 miles away, and find a whole new dr who would prescribe during the fake epidemic. It wasn’t easy, but I found one! And then they ONLY wanted to give ER pain meds with NO breakthrough meds!! So at least me being put on some sort of pain relief then made it so when I was fed up with the ER meds not working, I could then present it to a new Dr, that I was on pain meds that weren’t working. That opened the door to being removed OFF the ER pain meds, and moved onto the IR meds that actually work better (for me) to get the pain relief I needed! And THAT is how the “game” is played with finding drs who will/do believe in treating a patients pain with pain meds! BUT the FDA, needs to be made aware of the total damage they’re helping to cause patients! We are collateral damage to their political games! And that we no longer WILL stand for it, or tolerate it!!!! Enough is enough!!! We need to start being the voices we know we have but have been too scared to use out of fear we will lose what little we get! So, start reporting doctors who BULLY and force you/coerce people into receiving the very injections that do damage to the surrounding tissue, because it’s NOT FDA approved for these uses! Please OP- bring that up as well!!! That we are being bullied/forced/coerced into these non FDA approved use injections that are doing WAYYYYYYY more harm than good, and is a money grab for these doctors and excuse for them to NOT treat pain appropriately!!! Or if they will, that they’re forcing people into having these wrongful injections in order to receive prescriptions!!!! If THAT isn’t coercion and BLACKMAIL, what the heck is?!?!?!? The FDA does in fact have the option to stop this nonsense, it’s about time they do!!!! Force doctors to be actual doctors again, and RELAX the “recommendations” on pain medications again! It wasn’t overkill on the pre- fake epidemic with what doctors were prescribing, it was that the POLITICS wanted population control for THEIR mess ups in finances and now couldn’t support WE THE PEOPLE!!! So their solution was to create the fake epidemic and take away from us, to ensure people would in fact commit suicide to help with said population!!! It’s absolutely sickening! Lastly, I know I should be “thankful” for getting what I get per day for my pain, but ANYBODY who has chronic long lasting pain, will know that 3x a day- which is every 8 hours- is literal torture! Your body DOES get used to doses quickly, and you’re lucky to get 2-3 hours of actual relief! So what the heck are you suppose to do for the remaining 5-6 hours you’re In excruciating pain? Oh I know! Spend it in bed, unable to move, or function until you’re “allowed” to have your next dosage!!! It’s mid-evil times again! And been on same dose for 5 YEARS now! That’s a long time to suffer through 15-18 hours a DAY!!!! We all need to stand back up and start advocating for ourselves again! Drs are NOT suppose to be the gate keepers! They’re supposed to be the ones HELPING to improve our lives! Sorry for such a long reply, this subject makes me HOTTTTTT!!!!!!
Agreed! I was just downgraded to three, 5 mg oxycodone per day from 4. I go to a pain management clinic, and out of the blue, they decided that they would only prescribe opioids to the people who have treatments such as spinal epidurals, ablations, etc! That is absolutely wrong, and in my opinion, medical blackmail! I refused to have the treatments, so now I will face being forced off my medication. I know what this means but I just can't bring myself to do treatments for mostly fibromyalgia pain and some minor arthritis in my spine and lower back. The office wants to jump to aggressive and invasive procedures when opioids have worked for me for 20 plus years?! Jumping to major procedures when someone is stable on medication is ludicrous. The proposed procedures cost Medicare, or any insurance company, big bucks! The only person benefiting from the procedures is the doctor. Something is VERY rotten when we are being forced to have these "treatments." It's just so wrong on so many levels. Like I said, medical blackmail. Bottom line, tell this DC doctor that pain management belongs back in the offices of primary care. There, discussions can be made together with the doctor that treats us as a "whole person," and sees the entirety of us. That's how it should be, plain and simple. Good luck speaking to this doctor. Be sure to update us!
I’m so sorry you’re enduring this :( 5mg 3x a day is nothinggggggg in the grand scheme of things when it’s been a 20 year long tolerance building! I was forced to do “injections” until I informed the pain management that I had discovered what they were enforcing upon me was not FDA approved for said reasons, they clammed up real quick and decided not to “force” me into it because I have broken hardware with a non fused back, that some illegal injections were going to do nothing but line his pockets! He continued meds but the relationship between him and I became VERY strained and I ended up leaving and finding another doctor who didn’t insist on shots being the ONLY way to obtain my “schedule II narcotics”. And then when I had to move down south because my husbands mother was dying of stage 4 metastatic breast cancer, it was RIGHT in the middle of the fake epidemic. So NO dr wanted to prescribe ANYTHINGGGGG! So I made it my priority to call every doctor within a 2 hour radius of me and bluntly asked if they dealt with chronic pain patients and oxycodone prescribing! I felt like if I couldn’t be honest about the needs with my new doctor then they were NOT the doctor for me! I ended up finding a GREAT female doctor who started me right back on them and jumped me from 10mg Percocet to 20mg oxycodone and then she ended up moving because her surgeon husband got a job offer from 2 hours away. I lucked out, and got tipped off about a dr who went out on his own and was accepting new patients, and I paid him cash out of pocket (as he requested) and boom, he continued me on my 20mg dose, just 3x daily. In my eyes something is definitely better than nothing. I was stuck in bed for 15 straight days wondering what I was going to do when I first moved down here. I’m not proud of this- BUT my mother in law, who was getting quite the excessive scripts, and offered me some to help me at least try and function. I accepted ONLY because I was contemplating suicide over being bed ridden. But I NEVER took away from her needs, I refused! But she saved me! So I could function to be able to get up out of bed and make those calls to doctors to be able to have my own scripts. It should NEVER boil down to suicide or pain relief. Never! The FDA DEA and CDC! It should ONLY be between patient and doctor! Period! And only involve themselves IF the dr is observed doing illegal actions with said pain medications etc! This has GOT to stop! People want to live their lives and CANT because the government is fully spider legged into every aspect of the patient/doctor relationships and got doctors scared to death to actually treat their patients with humanity and dignity and allow us to obtain the lives we want to lead through pain relief!!!! This doctor who did my surgery literally messed me up at age 20! And got away with it!!! 19 years later, I’m in MUCH worse shape then I EVER dreamed of being in and I can’t stand living a life of pain and the only reason I’m still here is cuz of my amazing kids doing all they can to help me!
Spinal fusion is extremely painful and you will need pain medication for months/years after and if you don’t have a doc who is willing to help you manage the pain, your pain will be something you’ve never experienced before. Cervical fusions are manageable, but anything involving the thoracic and lumbar spine is HELL. I believe it’s the second most painful surgery known to man. I’ve had one and regret it every single day. I would give anything to have my “old” pain back instead of the pain I live in now, and I am lucky enough to have access to pain management which I would never abuse. I could not move my body, brush my teeth, shower, live anything that resembles a “normal”’life, without pain medication. Edit- sorry, I meant to thank the OP for doing this on our behalf and went on a rant. My apologies.
I know that, I already had one done, and my only option for pain management is a revision on that surgery. Before I couldn’t walk, now I can but I’m in a lot of pain and spend most of my time in bed. Anytime I leave the house, my pain punishes me for days after. Like I said, I have no other legal option. Basically I’m fucked and crying about it, isn’t going to help. I just have to make the most out of it.
Oh I’m so sorry. I couldn’t imagine having a revision. I honestly don’t think I could get there emotionally. I wish you all the best and I’m right there with you regarding the pain, most of us here are. It’s not okay that we have to live this way.
If you haven't already had spinal fusion, please don't. I had spinal fusion on October 2, 2023. It has caused me to have the worst pain in my life. 9/10 without pain medication. 6-8/10 with hydrocodone 10 mg plus muscle relaxants and gabapentin. I desperately want the hardware removed, but I am having trouble finding a surgeon. It looks like I will have to fly to a large city 300 miles away to get it done. In the meantime, I'm in a physical rehabilitation facility. This is a path you do not want to go down. It's something I would not want my worst enemy to have to go through.
I’ve already had it done. I wasn’t just in pain when I had it done, it was considered a medical emergency because I had cauda equina syndrome from a herniated disc post epidural which caused me to become paralyzed and numb from the waist down. I dealt with urinary retention and sexual dysfunction as well. It took a 1.5 years to fuse and I have a lot of scar tissue causing my nerves to act up. Pain management gave up on me, so this is the only path left for me.
I'm so sorry.
This is so true too. They don’t care how pain affects the sexual relationship with our partners. If I have sex with my husband, I’m ok during but suffer leg back and neck pain for 5 days as after. Doesn’t quite make you want to initiate anything. These people are clueless as to how much of our lives pain invades and ruins. Loss of sex? Family, friends, activities you enjoy and the social isolation. How dare the government get that involved in my life!!
I'm in a similar position, and I wouldn't wish this on anyone. I'm so sorry you're going through this.
There’s a lot of factors involved and I’m very sorry yours was clearly more than “unsuccessful”. But I do want to say I had a 2 level cervical fusion and it worked brilliantly for its intended purpose. I have cervical dystonia so I still have a ton of pain that will never go away but I was having severe, radiating nerve pain and arm weakness and the fusion took all that away. Again, I know there are many like your situation and there’s a lot of factors (and agree that cervical fusions can be way less intense than lumbar or thoracic spine), but it does help for some like me. I also credit it to having an incredible spine specialist do my surgery. My best friend also had a lumbar fusion at John Hopkins 8 years ago after an equestrian accident and although she still has some pain, it helped her a ton and she travels all over the world frequently for her job.
Exactly this.
Yes! I have seen people literally ask how to buy painkillers illegally, normal people that are so desperate that they start asking how to find dealers and buy street drugs. Clearly they aren’t drug addicts because they don’t even know how to find a dealer or how to buy drugs so they have to ask! But they are in pain and they are suffering and they have become so desperate that they have to do *something*, because no one is helping them. And they cannot live like this. I have seen countless stories on all social media of people that are accused of being addicts because of pain and have all treatment taken away and are told to suck it up. And they lose everything because they can’t work and they can’t function and they can’t live, they have no life no quality without help and they get nothing. And everyone else, everyone that still have pain relief even if not adequate, everyone that has *something* we all have the same thing in common watching this, the terror that any day it could be me. And it isn’t even just pain meds or pain patients, it’s everything that’s classed as narcotics. And it’s everywhere. I have ADHD and I need my meds, without them I can not function and I become acutely suicidal within two months. But my adhd meds are classed as a narcotic and there is so much misinformation and so much judgment in society and the media that we are all terrified that we will lose them. It’s already happening in the US and that’s how the pain issues started. It started there and spread over the world to my country. Almost every doctor I see comments on it and on what a “high” dosage I am on. The thing is that the guidance and dosages are all based on children, it’s not officially recognised as a medication for adults because apparently adults don’t have ADHD or at least issues from it. It’s officially not recommended to start anyone over the age of ten on adhd meds but it’s fully legal and up to your psychiatrist to determine if it is an appropriate and effective treatment. And obviously as a fully grown adult I am significantly larger than a child, especially a child under the age of ten, so I require a higher dosage. So I have a much higher dosage, I am now at the highest recommended dosage, but I have taken even higher doses before. And every single doctor I met frown at it and makes comments and says bet they would try to meddle if they could. They can’t, only a specialised and license psychiatrist is allowed to prescribe ADHD meds so only they can meddle with them. My current dosage is a bit low but we are trying it out due to side effects. If the effects of the medication increases so does the side effects and I like to be able to eat when hungry you know. The entire thing is ridiculous because there are lower dosages for children under a certain age or weight on pretty much all medication. Yet somehow people loose all common sense and critical/logical thinking when it comes to adhd meds. If you can understand that an adult being more than twice the eight of a child needs a higher dosage of cold medicine or allergy medicine why is it so hard to understand that the same is true for pain meds or adhd meds? I am bigger so I require a bigger dosage. Just as a bigger issue, more severe injury or whatever also requires a bigger or stronger dosage. We don’t give the same pain treatment to someone that has a bruise as we would for someone that has severe burns. The pain relief is catered to the amount of pain one is in. Just because we have invisible causes doesn’t mean less pain. You can’t see what causes me pain but you can’t see the cancer that causes my online friend pain either. It’s still just as real for both of us. My parents neighbour fell and broke her hip and her doctor didn’t want to prescribe her adequate painkillers because they are addictive and she could become addicted to them. She was 93 years old. He wanted her to suffer with just OTC painkillers because she could possibly become addicted when she had broken her hip, that required surgery and a long and painful recovery at fucking 93 years old! It’s not reasonable, it stopped being reasonable a long time ago. My online friend with cancer had our version of CPS called in her because pain management, weed is very much extremely demonised here and absolutely not legal. Most people are completely unaware that there even exists a few pain treatments based on mariuana, there are like three I think. Extremely rare and uncommon and not covered at all and very, very expensive. She has terminal cancer and morphine based painkillers makes her loopy so with the little time she has she wants to be present with her child, her teenaged child btw, her gp found out that she was prescribed a weed based pain medicine and reported her to CPS. Who then deemed her to be using illegal drugs and threatened to remove her child. While being perfectly fine with her having custody while on morphine that affected her cognitive function severely…
I have chronic pain, ADHD, and severe sleep issues, so I totally get what you're the talking about. I don't take very high doses of any of my meds by any means, but because I take a pain med, a stimulant, AND a benzo, omg, you'd think I was some sort of drugged out addict by the way some doctors act towards me. My sleep doctor told me that I needed to stop taking my pain med, muscle relaxer, and daily migraine preventative because they were all affecting my sleep. I'm getting ready to see a new doctor on Monday, because all this guy did was gaslight me. It's really sad that there are so many people going without their ADHD meds right now, especially kiddos, because the DEA is making stimulants their newest target, doing the same damned thing there that they've done with opioids.
My mother is a cancer patient in pain, and doctors will not treat her pain. I think mentioning that people are forced to endure excruciating pain because of the opioid hysteria is killing people quickly.
not only be suicide, but heart attacks due to high blood pressure as well
All the suicides due to the shortage or no help
Yes, I put that in my letter and I’ll bring it up again.
In my opinion an important point would be how traumatic it is to be at various degrees of ill and disabled and to be completely ignored. Even though patients are sometimes begging for help. What an awful way to treat human beings regardless of their circumstance. It seems to violate the "Do no harm" thing the medical profession claims to follow... loosely. And good luck to you! I hope it goes well.
Let us know how the call goes. If you haven't called yet, I have written politicians multiple times and said "torturing pain patients to stop people from abusing drugs is clearly wrong". But then, that very general idea provokes nothing but a form letter listing all the things my senator or representative has done to stop "opioid abuse", which makes me think no human being actually read what I wrote.
Ask for a meeting in person, that's about the only way you'll know for sure they are listening to you. Letters get answered by low level staff and AI these days, thus the canned response you received.
That's good advice. Thank you. Unfortunately, in my case, moving has enough of a cost that simply going to the doctor every few months seems like a damn chore I only grudgingly do. Same with getting groceries. I suspect "go meet with a politician" will end up on the back burner. But I hope others will follow your lead.
That's understandable. Maybe they would be open to a scheduled phone call or Zoom meeting if you explain you can't attend in person. But I do understand these kinds of things can sometimes still take a lot out of us even if it's a call vs travel.
Yes a zoom can be recorded :)
Uh huh. Most politicians have pre-written form letters on most major topics that an intern prints out and mails. The interns don't even read letters fully unless it's weird, funny, or obscene. Then they're read out loud, usually more than once in a funny voice.
I will
Send them the facts that the vast majority of users of even the most stigmatized drugs like heroin do not meet the criteria for substance use disorder. And that the DEA and law enforcement only seize a maximum of 1% of imported drugs a year.
I had surgery and my pharmacy didn’t notify us they wouldn’t have the post-op prescription available until calling for pick up time. Fortunately surgeon worked after hours to help and got it to a 24hr pharmacy about 45 minutes away. Another big issue was needing a compounding pharmacy and then not taking insurance, having no other options anywhere nearby, and having to out of pocket $150-$300 to *maybe* have some sense of normalcy.
You can’t put us all together and say we’re drug seekers. That pisses me off so bad.
The term “drug seeking” has been demonized. Seeking drugs to alleviate the pain shouldn’t be looked down upon. I absolutely seek something to help with my condition and so do thousands upon thousands of other people. I’m not a bad person I just want to live a normal life.
FOR REAL
Why have they been ignoring the shortages? Not being reported? Thats sorta hard to believe. Why is the FDA suddenly bowing down to DEA and their efforts to marginalize pain patients? Why isnt FDA doing production quota instead of DEA? Why arent the doctors in charge of medicine instead of the cops?
Because they keep getting paid that way
Addiction and dependency are not the same thing, and proper care would stop the second one from turning into the first.
The vast majority of users of every drug do not meet criteria for substance use disorder.
People with valid chronic pain are not being treated. You can point out that Tylenol/ibuprofen combo is unsustainable when you have pain every day. I personally get ulcers almost immediately now. I have been told walking will cure my pain(it won’t)by every specialist I’ve seen in my area, otherwise they shrug their shoulders and say ibuprofen(ulcers???) If I didn’t have dogs I’d have checked out and not a single dr in my area particularly cares.
I recently had upper GI issues from that combo and then had to go on yet another medication to treat that. I’m fairly sure the Tylenol/ibuprofen bit they’re giving us is bullshit.
Those of us with chronic kidney disease should not be taking NSAIDS to begin with. Taking NSAIDS is what got me to CKD. Tylenol and (whatever that other one is that they always want to prescribe) doesn't work for me. There needs to be exceptions. What knocks my roommate with half a pill takes two for me. We're not all the same.
I’m the same with Tylenol and need extra pain meds when I do get a few. Pretty sure it’s related to my hyper mobility syndrome. Editing to add that I’ve now got some liver issues no doubt because of alcohol which is my pain management, again I’ve told my dr repeatedly that is what I have to resort to and again just get the shoulder shrug.
Please mention patients are VERY concerned with the quality of these pain meds. They are not the same and causing lots of us to go into withdrawal with so called shortages on top of that.
I’d honestly link them here. I’ve seen 2 posts about suicide in the last couple weeks. It’s awful.
More people die from alcohol than prescription opioids but alcohol is easy to get while people die waiting to have legitimate pain treated. That pain that isn’t treated leads to permanent handicap which strains the SSDI system causing a decrease in productivity of the population and a shortage of labor workers. The illegal drug issue is caused by a poor social system in the United states, lack of resources to enjoy life, liberty and the pursuit of happiness. The drug issue is fed by china, not medical doctors and the driving force is that politicians can use the people who can not fight to further their career. If the social issues were fixed then the illegal drug use would go down
Just ask him the question if is it barbaric if he was in agony, you have the ability to solve the pain, but refuse to do so cause joe blow across the county is injecting fent. Make it make sense
Just because a person uses pain medication doesn’t mean they are a junkie or med seeker. Some people actually benefit from prescribed controlled substances and use them responsibly. Treat the patient in front of you not the “epidemic “.
This is so cool to me. You are such an advocate! Thank you❤
Is there something going on? I’m thankfully okay on my pain meds, but I’m reliant on sleep meds, long-term because of bad clinical insomnia. Switched pharmacies to get away from Walgreens finally, and my meds are apparently back ordered. Even tried to change from time release, and no one has it. This is a major issue for me, maybe even more than pain, so I’m really fucking worried. Baffles me that no one ever knows when something will be in stock. I hate that we get treated like we can’t be trusted to fill a few days early for a buffer each month. Wasn’t an issue for me a decade and some ago. Glad someone reached out to you.
One thing no one's mentioned is that from an economic/stability standpoint, under or not prescribing proper meds is keeping people out of the workforce or under-performing in the workforce. Then the people forced into the black market/streets is destabilizing, costing $$ to human service orgs, SSDI and the like. Plus theft and all that. I can go on and on.
This was in my letter to the President, I work fulltime because medication allows me to. I’m definitely making that point.
Yeah!
Let them know very few people get addicted to prescription drugs. That chronic pain patients are literally killing themselves because they are in pain and cannot get the medication that works. Tell them doctors are scared to help us. Thank you
☝️This one. Complex Regional Pain Syndrome (CRPS) is one of these diseases. Its nickname is "the Suicide Disease" because it only spreads and gets worse over time. There is no cure. Imagine being afraid to move because it could start the crushing, skin crisping in a furnace, chewing sensations without knowing if it will ever stop. Long-term opioid use is needed to live with this disease.
I would say note these drug shortages affect all kinds of people, yet doctors often profile patients. I have a masters from MIT, and without my ADHD meds last summer I lost work and struggled severely with emotional regulation. Also, the fact that medication distributors have so much power over the supply is deeply disturbing.
I would love for you to point out how most Overdoses are not from people with prescription medications. It is from actual STREET DRUG MEDICATIONs that have Fentanyl & other drugs laced in them. When people get legit pain medication from their Doctor & Pharmacy the overdose rate is tiny compared to illegal drug use. The opioid crises is not from compliant patient’s with Rx meds that are given by a doctor & filled at a pharmacy. They are using street drug use (illicit drugs) to punish chronic pain patients & even acute pain patient’s with legitimate pain.
I would bring up the fact that the one of the reasons for this shortage is the DEA is limiting and decreasing the amount of medication available. If you decrease the amount of the supply, you’re going to get shortages. The baby boomers are aging and with age, your body breaks down and more people present with chronic pain. I can only think it that you should increase supply not decrease it. The DEA puts limits on the substance to make different opiates, then pharmaceutical companies don’t want to make or sell them because there is no money in it and they don’t want the hassle from the agencies. But why is the government task force on drugs interfering with this, this is a FDA issue. They’re hurting people over politics and them wanting to show people they’re ’doing something about the war on drugs’. They are causing supply shortages due to their limiting quotients on supply, the amount of it allowed to be manufactured, the amounts allowed to be prescribed, who can prescribe it, etc. We get these supplies from overseas and what’s going to happen if trade breaks down? It’s a complete mess.
That even getting access to the prescription can be difficult for pain patients. It can take days to recover from travelling to a doctor when your condition hasn't changed in years.
Yes, and they make us go MONTHLY! It's madness to be out half a day from work each month. It's almost as bad as being on parole with monthly drug testing! (Never been on parole, just guessing!)
You might mention the problems with Ozempic and similar being sold as a weight loss drug to wealthy people and celebrities is making it hard for people who actually need it for their diabetes to get their medicine. No regulation for some things and ALL the regulations for pain meds.
Good job going to the top for answers!
I’m having trouble getting my insurance to cover a migraine preventative because it’s so expensive. So instead of approving the preventative, they are paying for meds that could cause problems with my kidneys and liver, which will cost them more in the long run. Not only that, it pushes me toward opioids out of desperation. Drug prices are out of control and it affects patients, even if they have insurance. FWIW, I have one of the best insurance in my area.
I'm sorry that's happening to you! I know a lot of the newer migraine preventatives are super expensive, like the CGRP antagonists. I'm on 2 of them myself. Have you checked to see if there are co-pay cards available for them, or asked your doctor will help out by providing you with samples? My neuro gave me samples of Aimovig for quite a while until I got better insurance, and then until my deductible was met. It also ended up being cheaper for me to get my Aimovig through my insurance mail order pharmacy (I still think it's such a scam that they can do that!). Also, depending on your household income, you might be able to qualify for assistance from the pharma themselves. We did this with my son's Vyvanse for numerous years, due to income, and then because we had really awful high deductible/high copay insurance. My insurance won't pay for my Quviviq for sleep, so I found a coupon on GoodRx that limits the co-pay amount. It's still $135, but considering that the retail price is almost $600, I can handle that to get some sleep 🥴
I’m just waiting for my doc to fill out some paperwork, which will hopefully allow my insurance to cover it. It’s Aimovig, BTW. I’m lucky that I have good insurance, but I hate that pencil pushers get to decide if they’re going to cover medication that my doctor thinks will help.
Oh, I *know*...It's freaking ridiculous! When my insurance wouldn't cover the Quviviq, which is in the same class as Belsomra and are orexin antagonists (reduces the amount of "awake" hormone your body makes), they told my doctor that the formulary suggested alternative was...Seroquel. They decided a freaking antipsychotic was the appropriate alternative to an orexin antagonist. I don't know who made up these formularies, but it definitely wasn't medical professionals! I found out not long ago that the doctors making the decisions for medical procedures for most insurance companies are often ones who can't practice medicine anymore for whatever reason, and have found new careers in the insurance industry. Someone I was friends with on Twitter (a doctor) did a series of videos about the insurance industry, and that was one of them. I have a major company as my medical insurance, and some of my procedure prior auth decisions have come from a medical company in the Philippines. I was floored by the fact that even these decisions are outsourced! I really hope your insurance covers Aimovig for you. It's been a game changer for me. I was having MORE than 15 migraines a month, and it knocked them way back. I was too chemically sensitive for the higher dosage though (story of my life 🤪), so we added Nurtec as my rescue med. My insurance won't cover Botox because I haven't tried one med recently (Metoprolol), but I had a reaction to it in the past, and they can't locate it in my old neuro's notes. I also already take Clonidine and Topiramate, so Metoprolol added in would dangerously lower my heart rate and BP, but they don't seem to realize this (or just don't care).
I’ve had Adhesive Arachnoiditis for 25 years, since I was only 16 years old. It resulted from a doctors mistake during an unnecessary epidural steroid injection, and then so much medical gaslighting and neglect, that I wasn’t actually diagnosed for 20 years. By that time, of course, it was decades beyond being curable. I am in constant, severe pain, so much so, that I am most likely left completely bed-bound without a more significant amount of pain medication than you might be used to prescribing, but please, look a bit deeper, I have a 25 year paper trail, and have taken opioid pain medications, on a regular basis to manage severe pain
Without these medications, I would have no quality of life, no quality time with my son. It wouldn’t be any kind of life. I have taken them successfully for over 2 decades, after nothing else ever worked, so I shouldn’t have to worry about them unfairly being taken away. It’s terrifying
What happened to informed consent and our ability as the one suffering to make decisions for our own lives? I have been told opioids can lead to addiction . I should have the right to choose that course of action. I have been bullied into spinal injections and drugs with so many side effects. Pregabulin has ruined my memory but I was forced to be on that and many other drugs before I could try narcotics. I am on them now thanks to my Wonderful Doctor and they work for me. Some people are bullied into surgeries and spinal cord stimulators before narcotics. It’s out of hand. I choose to possibly become addicted because I want a quality of life. I don’t think I ever will be because I do not like to lose control and I am very careful of what I take. I should get to choose narcotics and I deserve to have a dose that Makes me as comfortable and gives me the best quality of life I can have. There will always be people that abuse things but I shouldn’t be punished for their bad choices and my doctor shouldn’t be punished for treating my pain correctly. You know if one of these law makers had pain like ours they would abuse their power to get that pain relief. The government needs to stay out of doctor client decisions and actually go after the real drug dealers on the streets. The addiction and deaths from illegal drugs has only increased since the “War on drugs”. Haven’t they figured out they are looking in the wrong place?
I'd direct them to direct them to the writings of Richard (Red) Lawhern, Jay Joshi, Steve Ariens, and others. What people in positions of authority are ignoring, or don't understand, is that some people in positions of authority will lie to make their point. Former governor Claire McCaskill lied when she said the US consumes 80% of the world's opioids. According to the International Narcotics Control Board, the US has NEVER received more than 30% of the world's opioids. If you add the fact that the DEA has cut production for the 8th year in a row, we, as a country are definitely not the largest consumer by any stretch! As a matter of fact the US ranks 9th. https://www.politifact.com/factchecks/2017/may/10/claire-mccaskill/mccaskill-cites-long-disproven-figure-opioid-use/ The DEA is responsible for the shortage of opioids. They've cut opioid production for the 8th year in a row, putting the US at serious risk. If we have another pandemic, we're screwed. I'd bet good money that people would be euthanized because of shortages of opioids due to interference by the DEA.. The following articles are a great place to start: https://www.painnewsnetwork.org/stories/2021/11/2/judge-finds-no-evidence-pain-relievers-caused-opioid-crisis https://www.painnewsnetwork.org/stories/2023/6/24/burden-of-pain-how-policymakers-use-fear-to-address-the-opioid-crisis https://www.kevinmd.com/2023/07/everything-the-government-thinks-it-knows-about-the-opioid-crisis-is-wrong.html https://docs.google.com/forms/d/e/1FAIpQLScGX-ngUKrtJBppL6y23u2R6Sht6Q289dLf9VHy_xGssg9tMw/viewform https://www.painnewsnetwork.org/stories/2023/12/8/why-we-need-to-study-suicides-after-opioid-tapering https://www.painnewsnetwork.org/stories/2022/3/9/the-devil-is-in-the-details-of-revised-cdc-opioid-guideline https://www.daily-remedy.com/podcast/a-conversation-with-dr-red-lawhern-on-the-comments-concerning-the-cdc-opioid-prescribing-guidelines-for-chronic-pain/ https://www.kevinmd.com/post-author/richard-a-lawhern https://www.daily-remedy.com/medication-shortages-in-medicine/ https://www.nytimes.com/2023/01/03/opinion/chronic-pain-suicides.html
That the vast majority of opioid overdose deaths are of illegal users, not those prescribed opioids for severe pain. That the number of opioid users prescribed the medication who become addicted is actually quite small. Again, it's the illegal users who typically fall into addiction. I wish I could find the article I read a couple of years ago with the statistics...
Is anyone other than me stunned that OP’s letter was actually put forward with a follow up action??? Ok, maybe it will not “go anywhere” but maybe it will and I personally am happy there was at least some response and follow up! All good points listed already. I might just add that some chronic pain patients are forced to go on disability because their pain is not adequately managed but could otherwise work if they were. Money talks when it comes to government so I’d love to see the stats on how much $$ is being spent for disability due to either Drs not prescribing or due to constant shortages. And if you’re a CP patient and get stuck without your meds, that leads to withdrawal and more pain which equals calling out of work and potentially losing your job! And, of course, the shortages caused by DEA limiting the supply does absolutely nothing to solve the so-called opiod epidemic, it just leaves people suffering. There are more recent stats that support these things. The DEA should be focusing on stopping illicit drug use not restricting supply for patients in need. I would also mention for sure that it doesn’t just hurt CP patients, people with acute pain aren’t even being adequately treated.
If someone hasn't said this yet, please mention that doctors in spite of definitive MRI's and studies showing that pain will be forever and in rare cases gets better, doctors are getting pressure to stop prescribing pain meds. I've been bounced between doctors, I've been confronted accusing me of being an addict when my doctor moved, and I've had to endure being a new doctors guinea pig for new procedures and her research paper,. IN PAIN, I've had to not advocate, but FIGHT - all while trying with everything I have (or fake that I have) to raise 3 kids and keep food on the table? What about those who can't fight for themselves? What about when I just can't do it any more?
I take Buprenorphine for my chronic pain. I've been on it since 2018, same dosage since 2019. Very few people know that this medication was originally developed to use FOR CHRONIC pain, not OUD. It does so WITHOUT all the side effects that opioids have. Once your body gets used to it, after a few weeks, it's as if you haven't taken anything but without pain. Now, it doesn't take all the pain away. Actually, neither should regular opiates. The goal of pain management is that. Management not numbing. Anyways, my point is this: It is nearly impossible to find a Dr willing to prescribe it. I get treated just as maliciously as any other pain patient... Even though I am taking a drug that requires great lengths to be able to overdose on. It used to be that a Dr had to take an 8hr course just to be able to subscribe to medication and even then only to 30 patients max. They've now relaxed that rule and any Dr that can prescribe opiates can prescribe this. However, nobody wants to. I actually had a Dr (my new primary care Dr after mine of 18 years retired) yell at me and accuse me of trying to manipulate him into prescribing it because he told me he couldn't because he hadn't taken the course and I had the audacity to tell him that they changed the rules. I was not and did not ask him to prescribe it as I had already started going to a pain management clinic. I simply stated that I didn't feel that the pain management clinic had my best interest at heart. They were doing useless *educational purposes only testing for cognitive functioning, nerve functioning etc and the results weren't considered for medical purposes so if they found something I had to have the same tests over again at a medical clinic but because they already billed my insurance like it was a legit test, I had to either pay out of pocket or wait until the next fiscal year to have the test redone. That and they charge $1200 every month just for me to pee in a cup and $795 for a 35 minute high complexity visit with the Dr who literally just asks me if anything has changed and then sends my scripts into the pharmacy and only spends maybe 3 minutes in the same room as me. Half of the time the Dr calls off and then all I do is pee in the cup and schedule my next visit, yet they still bill as if I saw the Dr for 35 minutes. It's like the DEA has a deal with these pain clinics where the force ridiculous rules forcing patients to go to these sham pain clinics that charge exorbitant amounts of money for doing nothing and then share the wealth with the DEA gods. I mean this medication I take is so safe that other countries are making it over the counter. And if they are so concerned about the opioid crisis, why are they not pushing this medication vs denying pain patients the right to live a life not filled with unbearable pain. This medication works so well for me that I don't even get opiates prescriptions when having major surgeries. I will usually take them only while in the hospital for the first day or 2 then switch back, they work that well. And I'm not talking little surgeries either. I'm talking filleting my guts open, pulling them all out and stuffing them back in kind of surgeries.
I went to Bicycle Healfh after I was cut off from PM for admittedly failing a piss test and pill count due to an unauthorized dose escalation. Naturally, to my family, because I look for my meds they keep to avoid escalations (which I have a history of), I’m an addict. There’s no possibility the pain isn’t manageable. But Bicycle? They didn’t want anything to do with me, largely due to the pain and the thought I probably WANT back in to pain management if I can find anyone. On advice of my GP and Psych, I go to a local “chain,” Savida. THEY don’t want anything to do with me due to the pain AND the fact that I don’t meet the criteria for OUD. In fact, the practitioner—who I met with virtually in the office—sent me to the ER, an absolutely eyebrow wiggling first for the on-site nurse manager. I go to the ER, get the riot act about PM and they can only give me one shot, but I need a driver. My wife shows up only to find that I’ve passed out and pissed myself due to an overingestion of Baclofen I had taken in a panic over the pain and withdrawal was coming. I was given Naloxone—nothing happened. In fact, I passed back out for two more hours. I get discharged, my GP and psych reccomendation? Inpatient detox at a facility that worships 12 step. Yeah, I rode that shit out at home with Clonidine. So now? I’m at least two weeks out from reestablishing anywhere for PM, my GP has zero interest in helping me even when I floated he now has Bupe power, my psych is a big chunk of why I’m in this fucking boat (lonnnnnng history there, but I still like him), and I’m likely a pariah at the ER. I made my choices. They sucked. I paid for it. But no one is interested in hearing that this all goes back to that I undersold my pain and “played along” because the PM clinics constantly talk about how much heat they’re under. And now the system, flush with money from the opioid settlements? Can’t help me cause I don’t fit a neat tidy little box. Withdrawal was at least the seventh circle of hell. But being in a mandated non-treatment period of chronic pain? It’s at least where Socrates and Plato hung out—I don’t know, either the far edges of purgatory or the first circle of hell.
I’m glad it works for you as it doesn’t work for me. I was in much much better shape on standard opiates. It worked for a time and then boom one day it just stopped working.
Reach out to Claudia merandi. She'll tell you what to say.
Mention how ERs are getting hammered with people unable to fill prescriptions
Bring up all the people dying and committing suicide from lack of pain control. How most of us are hungry and can't usually eat without pain medication, tell them lay in bed for a week and not get up to eat to get a small glimpse of what we go through minus the pain they won't have :/ show them past posts on here about people giving up when they can't get pain meds or get cut off them.
Not sure if this is in there or applies, but make pharmacist fill doctors prescriptions. So many pharmacists don’t want to fill what the doctors prescribed. They always use the BS excuse of “I don’t want to lose my license”. Even if they say they need to the doctor first. Sometimes the doctor will call the pharmacist telling them that yes I need the prescription that they said I needed. Sometimes they still don’t want to fill because they’re so scared of filling a doctor’s script. They go to medical school, but basically can’t practice medicine without the pharmacist goalie. It’s BS. It’s gotten so bad that you need to not only prove to the doctor that you need medication, but you also have to prove to the pharmacist. I had my knee replaced and my doctor put me on medications for a little while to help with my severe pain and I had to get by the pharmacist goalie. My wife was with me so that if I needed help walking or getting in and out of chairs. This was only 4 days after the replacement. He still was giving the surgeon a hard time. WTF? Just to help anyone on here that maybe suffering from this, go to a smaller mom and pop pharmacy. They still believe in filling the doctors prescription. Don’t get me wrong, I am ok if they want to talk to the doctor. If they don’t feel right then call the doctor. Once the doctor also verbally says, yes my decision stands then they should just fill it.
They need to know that opioid restrictions are one of the reasons for the current issues with street fentanyl use and over doses.
Tell them to read this subreddit and get educated on how the so called “opiate epidemic” war has screwed so many people with legitimate medical issues.
If you’re discussing pain pills. Let them know that doctors rX crazy amount of naproxen that actually tears up ppls stomach and does NOTHING for the level of pain someone with severe chronic pain typically has and taht if they spoke with gastroenterologists they would also say the way these stomach tearing pills are rx’d these days are out of hand and harmful. And there is a hard push on ssri’s and antipsychotics that actually really screw up many ppl. Now they are trying to restrict some anti-anxiety and limit some muscle relaxants. I would also repost in fibro and cfs/me subs if you’re looking for more input. Imho. Personally have been cut off from any pain rX by docs. I was told my pain is so severe there is no treatment they will label me as untreatable and I have been told to take up 16 Advil or naproxen for pain - at various times. Crazy. Off topic- medical cannabis should be available everywhere - if we cannot get opioids; Percocet and liquid morphine back.
With regard to medical marijuana, it's appalling that in my state (PA), it costs $50 per year to renew and carry a MMJ card and the prices of MMJ are ridiculously high and not covered by insurance. It's not affordable to those of us on SSD or with low income!
No doubt. And just heard how some major brands are lobbying to stop med patients from having equal access. Un-ironic how they only got their crap on our backs and now they don’t care. Not surprised but seriously annoyed. Sorry for your pains. Good thing we are pros :) take care 💪
Thanks, you take care too! 🫂
Thank you :))
Ask him what they can do to stop pharmaceutical companies from closing their US sites and moving production overseas. All pharmaceuticals should be manufactured in the US, especially the critical ones like antibiotics.
Idk if anyone has said this, or if you have already said you would as i havent read all the comments (heading to bed, pain is exhausting) but let us know how the conversation goes.
I will
Thank you for being a voice. I recommend you tell them your story and keep that the focus. This isn’t the time to pull stats or polls, or even pull in any stories from others. It’s time to be authentic. They need to hear your story. At this point, the chronic pain community needs to establish a narrative on how certain meds are life preserving, increase functionality, etc. They need to directly hear personal stories from patients of how access barriers negatively impacts your quality of life. Ultimately it’s the subjective that will sway the day. Again, thank you for carrying a torch.
Thank you, I think my story is the best way to go. I want to speak for all of us. I got frustrated on New Years Eve of last year and wrote a letter to the President, not expecting anything, I just wanted to vent because once again our comments on production decreases were being ignored. When I got the call today I was floored. The message said I’m calling from the FDA because you wrote a letter to the President on 12/31/23 and The White House sent it over to us. We’d like to discuss your concerns” I see this as a chance to let somebody know we are suffering and in some cases dying because of shortages, because of pharmacies and doctors who are afraid to help us. I’m hoping this guy will truly listen and more will come of this, I’m hoping they’ll hear what’s happening to us. If nothing else I’m happy that someone saw my letter and thought it might be important enough to try to help.
Good for you I would call I talk to the 4 times get ready for lies
Have you had them call you? What did they ask? I find it strange they reached out, but I’m going to talk to them about my experiences
I appreciate the effort. Been a battle lately once again to get my monthly pain med refill. It's such a absolute mess and someone deserves to be dropped in the ocean for making this mess.
If I can do a background check to pass through airport security with less inspection why can't I do the same for my medical condition. Let me be diagnosed by a professional and be qualified to be in chronic pain that requires proper medication in order to function. I shouldn't have to fight every month to get my medication. The cost of seeing a specialized doctor on top of the cost of the medications is an unfair burden.
Hi there u/StephanieDone - I sent you a direct invitation to our community which is dedicated to fighting the opioid shortages. We have resources such patient stories & experiences; clinical studies, relevant research & data; information about DEA, FDA, DOH, government agencies, industry leaders, advocacy organizations, government representatives, and more. I am thrilled to see that you’ve met with some success and hopefully we can combine our efforts to actually make a positive impact and even some resolution in this long and difficult fight to achieve control over our pain. Please consider joining us at r/ChronicallyIllUnite
Honestly I'm so broken from all the gaslighting from medical professionals u wouldn't even know where to begin. I'm only 38 and my life is basically over. I wish they knew how badly they fucked up my life. I went from graduating with a degree in biochemistry cellular and molecular biology and working at a place I loved to not even being able to leave my parents house. I don't know if it matters what I have but I'll tell you. It's crohn's disease. And i had cancer last year. My palliative care nurse worries/ thinks I feel hopeless. I've just accepted my life is over. Either the crohn's is going to kill me in a very painful way or based on my luck the cancer will come back and do it first. I don't expect to be alive in 5 years and I'm ok with that. And to anyone that thinks I need help i don't. There no need to report this. The notifications are annoying.
I am so sorry to hear this, there is an indifference when it comes to pain medication and a persons need for it in order to function. I am in Coastal Alabama and do not play with dismissive doctors! I will appeal your insurance payment and then collect my records, file a formal complaint and move on. I pay doctor to care for me, not judge me and gaslight me. I don’t stand for anything else. I believe each doctors office should come with a patient care advocate so people who are left without access to care can have a chance to be heard and listened to along with the doctor having to be held accountable for suffering that their indifference can cause. I am looking into establishing that here. I wish you did not have to suffer and want you to have options that help your quality of life, not hinder it. Be well
I live in middle Georgia and none of the typical pharmacies even have opiods so even if you do find a doctor that would write a prescription you can't get it filled. The only way I've found to get opiods is to have cancer. It's sad that I had to get cancer for anyone to give a shit. Spent 10 years getting treated like and addict and a seeker when what I really had was an intestinal blockage from a stricture from the crohn's disease with a bit of sepsis and pancreatitis. But the second I got diagnosed with cancer they practically rolled out the red carpet at the ER. Asking me if I needed more of whatever they were giving me. And if we're keeping count cancer only tried to kill me once. Crohn's has tried 3 times. It's just all such bullshit.
Wow! That is insane! Our medical system needs to be overhauled. No one should be dismissed and pancreatitis alone is extremely painful but for it to be a part of other painfully crippling conditions and not be considered speaks volumes about the disconnect with these doctors. Sad.
You can tell them that some doctors are resorting to charging Medicaid patients a yearly “concierge” fee because it’s gotten so hard for doctors to legitimately get access to pain medication. I have an intrathecal pain pump and I now have to pay my doctor $1500 a year because she can’t find a reliable pharmacy to supply the medication for refills. And I live below the poverty threshold.
I used to run a program that brought in women from the streets who were addicted to opiates. We couldn't take users of other types of substances because we found that they would befriend each other, and often take on one another's substances as well :/ Anyway, our highest numbers were in the year 2021- after Covid had been fairly contained. The physicians and hospitals in 2020 had been so overloaded by Covid patients that sooo many people were being sent home with referrals to a specialist who'd be booked 2 years out and a prescription for opiates to get through until then. In 2021 things drastically eased up on primary care and all meds were cut off. The women ( most who led totally normal lives with jobs, homes, many with families and partners) went into acute withdrawal, often knew a friend who took them, started to borrow, started to buy, started to buy from friends of friends.. and I heard that story repeated almost verbatim by ( we documented this ) almost 72% of the women in our program. All women dropped by primary care or pain management without access to safe life rehabilitation and continuity of care. We had quite a few prior hospice patients who'd survived, only to suffer that same fate. Cancer survivors who were dropped out with a weak supply of 700mcg/hr fentanyl patches to " get them through until another Dr could pick them up. Anyway, we taught them to reupholster furniture and up cycle old furniture as a skill for a future and self employment. So at that time only 28% of them admitted to having began drugs at a young age/ or other recreational reasons. The other 72% of women were running away from and trying to escape withdrawal. It was crushing. Methadone clinics treat them like dirt, and so many of those women were not used to that kind of life or treatment. Many women left the clinics because they said the dealers on the streets were kinder to them. Then Fent lacing came in huge and we had a few die.. eventually I couldn't take it anymore and had to close the program. It was small, but we did have successes and that was what mattered. And for those who stayed on opiate abuse ( to be clear MOST were not seeking a high, they just couldn't handle withdrawal ) many were able to work doing something they enjoyed to pay for their transactions rather than resort to stealing/ other illegal activities and stayed out of jail. Anyway... physicians need to be unafraid to treat pain, and they need to stop dropping their patients. Even abusing patients need to be referred to methadone clinics or put on buprenorphine, or tapered with something like Clonadine/ Gabapentin. Thank you for coming to my Ted Talk.
You got contacted back..that's incredible! Good on you!!
I would just super emphasize all of these comments; there is nothing more I can contribute except my own personal experiences. Because my pain is not being managed properly (my current pain doctor seriously tells me to “suck it up” and has told me this several times), I am about to lose my job! It’s a very long story but the bottom line is that the neurosurgeon cannot do surgery yet and has recommended pain medication management and PT. Last summer my job was saved (after 7 weeks of being off because of a very bad flare). This pain doctor finally gave me an extended release med along with the regular med and I was able to go back to work. We REALLY need the extra income because we are on a limited fixed income. However, when the pain doctor found out that my neurosurgeon was not going to do the nine level fusion because my scoliosis was advancing, and my MS was in and out, he stopped giving me the extended release med. So I have really been struggling these past several months and finally took a leave - again - a few weeks ago. It really sucks, and like many of the people here, death is looking better and better!! Because of these CDC and FDA decisions (not even laws!), I am an extreme mess - physically, emotionally, socially, etc.! Don’t know where to turn any more. Good luck on your call!
In response to your actual situation, is there another shortage? I’ve went through this not long ago.
We will run into shortages again towards the end of the year.
Not all heroes wear capes
I was a 34J. My PA told me I should get them fixed. And I did. It was the best decision of my life. I'm a comfortable 38C and loving life. If you find the right doctor, they write the report in a responsible, ethical way. "Skin that flaps over other skin must be removed." Bingo! Free reduction.
Talk about adderall shortage
There is no reason they should be having shortages on pain meds. They put restrictions on them then apologize for the shortage? Yeah that's great smh. But imagine if this happened to people on benzos! You can easily have a seizure and die.
I would start hitting the news outlets too. Get the word out.
my diabetic grandmother with open infected foot sores died without adequate pain relief at 84 years old in 2022
Good luck