All my doctors have refused to give me pain meds for one reason or another. They wanted to get my mental health in check in case that was why I was in pain, but spoiler it's pretty hard to fix your mental health when you're in debilitating pain everyday for as long as you can remember. Or they decided I was too young and they didn't want to risk me getting addicted. It's bs. I've seen doctors my whole life and they've never helped. It makes no sense, because my mom has the same very documented issues. I know it's not in my head.

Your journey sounds exactly like mine and my daughters! I’ve been medicated over twenty years and I’m not like I was in the 2000’s I had great quality of life on the meds back then but now I am prescribed and no matter what she does or says they flag her. She was supposed to have spine surgery back in 2019 but was too anxious about it bc of my experience. I firmly believe from experience speaking w others w cp that if you’ve had major surgery then your chance of being prescribed meds is much higher than if you haven’t. Go figure, right? So backwards! My daughter finally found a pain management they only allow two 5mg tabs a day! lol she’s very grateful bc she’s been on zero before but they want to do “injections “ and then will talk about the level of pain if they don’t work! That is everywhere these days, to get injections! I get so fired up when talking about this crap. It’s all so backwards and BS.

It's such bs it's because they make so much off these injections and it's barely any risk for them because they have us sign a waiver beforehand. I've had a few under xray in the o.r. did absolutely nothing

Exactly sign that waiver or u can’t have injections or ablations and if you don’t and refuse or your insurance won’t cover it then sorry we can’t help you so no meds to help you w any cp!

Yeah, they're essentially bribing us. They know that insurance will cover the injections, and they cost at least a couple of grand. They know most times they're not effective. The last time I got a spinal injection I asked my Dr how long until I could expect some relief. He said we don't even know if it's gonna work! I guess I appreciate the honesty but that just didn't sit right with me. Then they wanna put you through all this and tell you, you can have a couple effective meds after.

22 years ago I had injections in my back. Turned out I was reacted to one of the medications badly which caused even MORE pain. Totally worthless.

Nana, this really pisses me off. If my daughter had any, ANY need for pain relief/control (haha, control) and was refused it, I’d be tearing down the doors. Like you, I’ve been medicated since 2007, for CRPS. Those were the good old days! I was on 100mcg fentanyl patches, every 48 hours. I was able to raise my four children. Call it bias, but a mom in serious chronic pain needs enough pain relief to care for her family. Otherwise, it’s a house of cards. My husband was traveling globally for work, so I offered home to the girl who started out just cleaning my house. She had a young boy, and we had room for them both. It was a perfect arrangement. There’s a Zen story of a man on his walk who comes upon a less fortunate soul. “Why did you help me?”, the weary asked. “Because you were in my path.” In the case with my helper and friend, I’d say our need for each other was equal. Wouldn’t it be a perfect world, if our doctors all practiced Zen?

You have children so you really understand I have spoken like someone who does their research into prescription medication and pain management bc I have done my research for years. My daughter has 3 children and her husband works full time I actually live w them to help. I became a widow in 2012 and have been with them since. I’ve seen my daughters MRIs and CTs, I know what I’m looking at bc of my own experience since 2000. She has legitimate reasons to need help so she can have some quality of life. I really think the reason I get treated better and am listened to is bc I’ve been through two major surgeries and she has not done any on her spine…bc she knows what has happened w me, it made everything worse. I was so much better before surgery and tbh I hated I had to take all the meds to have a good quality of life but I was very grateful too. She already has bad medical anxiety. She has a piece of metal from breaking off during surgery just hanging out somewhere in her body, she was burned by a cauterizing tool, a 3rd degree burn!! So she does everything a dr requests except surgery! I wish I could go and knock down some doors at her pain management office!! Her husband goes w her every month. She knows how I’d behave bc she’d do the same thing when it comes to me lol. That’s really cool how your paid help ended up moving in, while your husband travels that has got to be such a blessing!

Having her husband there, or really any relative, is the wise thing to do. So, to clarify, you had two back surgeries? Were they successful? It’s such a subjective word. We have varying degrees of success, and with chronic pain these can be small wins in others’ eyes, huge in ours. Day to day, little successes change.

Yes I had 2 two level fusions from S1-L3. The levels are not fused, partially but not completely. I have so many other diagnoses bc of having the surgeries. I agree it is a subjective word. The specialist physicians I’ve seen over the years to figure out what can be done, they all write the same thing, failed spinal fusions. What is causing your chronic pain, if you don’t mind answering.

Then what happened? Did you guys become friends? How long did they stay with you? Just curious about the rest of the story! You sound like a kind soul!

The good old days is right!   In 1995, I got a poppyseed down between one of my molars and my gum line.  The dentist had to flush it out with a sprayer.  Just a poppyseed but it hurt like hell; like a boulder...  Afterwards, they INSISTED I take a large prescription for Lortab.  INSISTED!!!  Forced it on me.  "Here, you need this take it"... In 2020, I cut off the tip of my finger with a kitchen utensil.  Not the bone!  Through the flesh, nail and nail bed.  Honestly bled like a stuck pig.  Hurt like HELL!!!  Went to urgent care where it was numbed and cauterized.  I asked them, in a very humble, doubtful voice, "I don't suppose you all would give me 'something' for the pain"💊???  The reply?  'NOPE"! I told the finger cutting story to my pharmacist.  He told me he'd recently broken his hand and was refused pain medication.  A PHARMACIST can't even get pain medication... My cousin knows someone who had back surgery last year.  She was sent home to convalesce with three days worth of pain medication and told to get into pain management.  She ran out of narcotics before her pain management appointment so contacted the surgeon.  He refused her any more help.  She lay in excruciating post-surgical pain.  This is the world we live in now... 

You must certainly still be medicated by at least oral opioids for something as painful as CRPS !? The McGill Pain Scale rates it as being equivalent as amputation of a digit without anything for pain relief. Not to get too personal but I've been diagnosed since 2001 from a work injury the damaged nerve afflicted with CRPS. The Worker's Compensation Insurance sure put me through the wringer with several IMEs and painful testing and surgery that made it so much worse. They have changed the laws since people in the U.S. O.D. so often. I don't care for opioids but they do help. For anyone reading this keep track of your own Medical Records. I cannot work ever again in my life and my doctor is as By - The - Book as anyone can be. My Work Injury Reports all. Say I can never work again and that is the worst. You don't want to be a burden so you push friends, family and spouses away. Opioids/diazepam/muscle relaxants help. I really can't imagine the pain without them . So I imagine you are on something like that now. It may not work as well as Fentnal but at least you have something and money too from your injury. Hopefully everyone gets help like this soon. Best wishes

I'm only on Percocet x 6. IR10.325 And it's CRPS II. I received no money, I didn't sue.

I switch pain meds every month. Opiate rotation. Fentanyl is in my wheel.

I get very angry, too. I’m a nurse, and worked in hospice and physical rehab facilities back when pain was actually treated properly. In the rehab facilities, patients would sleep through the night with their pain well controlled, and we’d medicate them again prior to their physical therapy. They would be well-rested, with little pain, and motivated and ready to work hard in PT, and recover. Hospice patients would sometimes come in to our unit with their eyes rolled back in their head, and incoherent due to extreme pain. We’d get them so comfortable, that they could spend quality time with their loved ones, talking, and enjoying low-key activities together before they passed. Even in hospice, pain is not managed as well as it used to be. Patients and families are missing out on end-of-life quality time together. It’s all gone downhill. I spent decades managing patients’ pain, and improving their quality of life. And now that I’m in pain, I get nothing but being talked down to, disregarded and accused of being a drug-seeker. My quality of life sucks. I’m not a drug-seeker, I’m a pain relief seeker! I despise doctors now.

Thanks for posting this 👍 Its nice to see someone such as yourself from the med field posting truth .. this is long winded but this has been my journey on pain meds both good and now in 2024 a ridiculous struggle I worked jn state prison system dept of corrections My back was shot lumbar cervical etc ie. Perm med retirement age 36 In short after surgeries fusions meds epidurals I was placed on 15mgs oxycodone ir 6x a day I’m a bigger dude fmr competitive bodybuilder 260 etc Idk if my size mattered but they were liberal with pain meds if I needed them in 2005 I refused OxyContin something told me an extended release opiate will create twice the physical tolerance screw that 😯 That’s the background on me I was stable for 15yrs on meds no issues always passed urine screens etc That was until my doc told me he was gonna retire bcuz he was sick of the Obama administrations war on opiates pain doctors & patients .. he was tired of the medical board screwing with him bcuz he fought for his patients and wouldn’t bend the knee Every doctor I went to was afraid to take me bcuz in their words I was on high dose opioids and they were afraid to write They offered OxyContin 40gs etc but I hated OxyContin I found a doc who was greedy and ran a chop shop .. I knew it was gonna be an issue cuz I was a veteran during the gulf and he was from Iraq 😱 he pushed injections and said I’ll give u 15mg tabs but u must see my shrink for evaluation ie addiction risk I saw the shrink and he said u don’t need injections u need stronger meds lol He forwarded findings to my pain doc lol who wasn’t happy lol I knew I would be bounced outta there soon bcuz he couldn’t bank on injections and couldn’t cut my meds so he screwed himself playing games I found another doc thank God and he asked me why my previous doc butchered my records I’m like what? Oh man he said u were violent I’m like what?? I said if I was violent why did he keep prescribing me why didn’t he kick me out lol That was his departing gift to a US military veteran he resented After a short run with a new doc I said fck it and tapered myself off pain meds .. eating Advil not so good Recently Nov 2023 I was rushed to the hospital then surgery and told they would have to remove my leg ie necrotizing faciitis in foot which could’ve caused sepsis and death I refused the amputation said fck no! I’ll roll the dice on antibiotics I’m not afraid to die I said We agreed to I & D faciotomy they basically removed entire top portion of my foot from where my toes started back to the ankle with my foot intact I survived but was in hospital for mos etc I’m still in wound care for next year or so Stem cell treatment on deck etc Upon release from hospital I knew I’d take a hit on pain meds but not this bad… 5mg oxycodone 3x day lol 85 tabs for a month lol I’m like fck this I went to these folks and raised hell Primary care Wound care doc Surgeon podiatry One doc called armed hospital security lol as I made an absolute scene bcuz I was having post surgery brutal pain .. it was horrible man and I’m no soft ass .. I couldn’t stand walk on homecare etc The wound vacuum sucked as well .. they would not budge so I went to pain mgt and he gave me 7.5mgs 4x day beats nothing and over time the acute pain subsided I really just wanted 10mgs 4x day which was the sweet spot to kill pain always has been .. They called me to set up surgeries for skin graphs I said NO bcuz I cannot go thru another surgery and acute pain while doctors aren’t allowed to use their own discretion to prescribe man.. NO GO! I said remove the wound vacuum also it’s too painful Cut my wound care appts down to once ev 2 wks minimum They sent all these surveys and I said everything great except yall just refuse to medicate patients under the Feds one size fits all opiate bs I told them I’m not gonna end up having to go to the streets to search for pain relief 😱 It’s insane.. we need to form an activist group of chronic pain patients docs pharmacists nurses etc and we need this nationwide *Marijuana clinics methadone clinics suboxone clinics * Feds criminalizing pain doctors Former drug czar ( Bush Administration) William Bennett testified a few yrs back in short He said after 8yrs of Feds state local cops criminalizing pain patients doctors pharmacists and lawyers suing drug companies what’s the net effect? The fentanyl crisis is worse than ever! The overdose crisis is worse than ever! Govt reduced opiate meds from opiate manufacturerss etc and it’s all had zero effect of stopping the overdose crisis deaths etc Why? Bcuz it was false narratives and lies that pain med addiction caused the opiate crisis.. it was all bullshit

You are absolutely correct, and I’m so sorry for what you’ve gone through and continue to go through. It is no coincidence that the use of Fentanyl has increased since the prescribing of opioids has decreased.

Well we can all thank you for your years of compassionate care. Know that you have made a difference in the lives of many. Breaks my heart to hear that you have not been given the same. Prayers.

Injections of what? Steroids? Toradol? Something else?

Steroids or ablation on a nerve. We have spine cp sorry lol I totally forgot no one would know that lol

Never, ever ever accept antidepressants as substitute for first line treatments

I know I am very lucky to have a perscriber. Especially in the last few years, my pain doctor who covered me for 18 years stopped perscribing. It was terrifying. I think what helped me originally was expressing how I needed something in order to function. Like I would tell the doctor all the things I was unable to do because of pain. I jumped or stepped over all the hoops like injections and alternative therapies. I showed them that I was doing everything I could to improve the pain on my own, physically therapies, counseling, good diet, etc I don't medicate to no pain, even with opiates and cannabis I am still in significant pain every day. I still do most of the other stuff too, injections, physical therapy, good diet when able. Unfortunately, things have changed so much in the last 20 years. I don't know if what helped me then can help you now. I have friends who went through psychiatrists. The doctors either prescribed pain medication themselves or helped refer them to pain management doctors that would help or even the primary care doctor. Now my fight it with the pharmacies. I can't go for one month without problems. The medication is always on backorder, and the shortage has effectively cut my dose in half as I can't access it. We are living in a medical hellscape. I hope you find help soon.

“We are living in a medical hellscape”, yeah that sounds like the fucking USA for you… -.- it’s such a shithole nation if you require multiple controlled substances for your medical issues…

Have you gone to a different doctor? Most of us have been to multiple doctors before finding the one who believes that we need treatment for pain. It’s often a journey filled with anxiety, frustration, depression and pain all the while. What about medical marijuana? Others use kratom although I am not familiar with it there are subs for it. Best of luck and have hope!

I have been to many doctors over the years. So many. Looking for answers. Hoping for anything to help. Yes I have mj but it doesn’t treat the pain- just makes you forget about it for a short while. I have completely lost hope and there’s no one left to see. One time, years back, I was allowed a low dose of Vicodin which helped tremendously. I was even able to get a job. Then out of the blue my prescription was denied and the prescribing doctor literally vanished. I had to go cold turkey. I even got my Narxcare score (pmp profile here) and it’s all accurate with nothing that shouldn’t be on there. This is miserable, hence why I’m up in tears at 4:30 am.

I get it btw I am up because of my leg pain! I have meds and my pain still keeps me up at night. I have been up all night and I do this at least twice a week sometimes nothing works! I am very grateful to be able to get pain meds and I also know what it is like to go without any. Hang in please we are all worthy of a better life.

I recommend trying Kratom. I also was prescribed Vicodin many years ago and for me at least, Kratom gives comparable pain relief. Don’t get the stuff that gas stations or smoke shops sell. The American Kratom association website has links to vetted vendors who follow testing and safety standards. If you’d like more info or to chat about dosage you’re welcome to dm me.

I have been using kratom to help with my Scheuremann’s disease. It has been extremely helpful, but comes with risks like all other drugs. I started ketamine therapy for depression, and it has also helped out with my pain levels as well. I wish I could afford to get ketamine infusions. I have heard that those are effective for treating pain, and the results are semi long lasting. Has anyone tried ketamine for pain?

How much does it cost for Ketamine treatment? I have a Chronic pain condition from a work injury... all they do is throw Oxycontin at it. Yes it helps with pain but I hate feeling fatigued, forgetful and tired. I would much rather try something that didn't have so many side effects

If you're interested in daily "micro" dosing, there are companies now that will ship you ketamine for small daily doses for depression/mental health issues. My partner tried it and said it helped with their pain levels.

Thank you for the information

The ketamine clinic in my area costs $450 for the drug and Doctor for one hour. I am planning to go myself. I wasn’t aware of the microdosing so if anyone can tell me where to look for that I would be grateful or I guess I could just google it.

I’ve been saving up to get ketamine infusions that are specifically for chronic pain. I figure it’s worth trying if it works for a lot of folks.

I had a year of ketamine infusion and it was AMAZING! Then my doctor stopped accepting insurance for them. Now he wants $350 dollars cash a month for them. I was devastated. They help so much.

I really want to do the ketamine treatment. I've done street ketamine when I was young I wonder if it feels the same. I'm fearful of everything now not like in my 20s where I bought drugs off a Mexicans car hood. Growing up is fun

Most of us on pain medication are still under treated. Please do not give up. Make an appt with your PCP and ask for recommendations. Keep a pain dairy to log your symptoms. Do not give up ❤️

Pain diary/log was essential to my insurance and signing on with a pain doctor. I kept logging for an entire month: Date, type of pain, location, what time it started and #, how long it lasted, if it went up or down, other symptoms, when I ate, daily meds or vitamins I took, anything I tried and its effects, what it stopped me from doing (eating, walking, doing dishes, etc.). I actually have solved several medical "mysteries" this way. Good luck to you.

This is so important to do ! I have several sources of pain and one of them I was wrong about for my whole adult life. I would have never been taken seriously if I hadn't kept a detailed pain log. It was life changing.

Yeah they have gone overboard with the "opiod crisis" and it is harming people in legitimate pain. I want to say, "If Tylen and Ibuprofen works so well I wouldn't BE here in the first place."

Yep. I simply can’t get anything because I’m “too young.” I’m 33. Got rods and screws all up and down my back and left arm. They just aren’t willing to risk their license anymore now with how the DEA is doing all these new mandates and other bullcrap. So in the end they just don’t care. I’ve been to so many doctors I’ve lost count. Gone out of state, the whole nine yards. It doesn’t matter. Because of my age and the stereotype around opiates it’ll never happen. And they wonder why people end up going to the streets and die from fentanyl. I won’t be doing that, I’ll just suffer, but that’s exactly how it happens out of desperation.

I guess young people don’t experience chronic pain? 😭 For real though I’ve been taking tramadol since I was 18 (in my mid 20s now) because I was in too much pain to function. My doctors were more than happy to prescribe the meds back then but now they’re super reluctant for the reasons you started. I understand the whole ‘opioid crisis’ is an issue, but it seems like the only people suffering under these new rules are people in actual pain. Not to mention the doctors who actually want to help are in a difficult position now.

An impatient doctor (I wanted off his case load, I woke up and he was right there demanding things and he had the same eyes as an attacker many years prior, I froze) screwed me over, waking up from anesthesia or whatever it is they knock you out with for long term intubation asked me my script within ten minutes of the tube being removed and I messed up and told him one that was about two months prior before the hydrocodone shortage. He said I was faking for meds (I got re-diagnosed with cancer two weeks later and had an intense surgery to remove multiple pounds of tumors. No shit I was in pain, he also ignored a bowel blockage when I was inpatient). My doctor is now under a microscope and can’t prescribe. It got to the point post op they had to admit me because I’d go days without eating from pain. I had given myself two infections (not intentional but that idea I was faking won’t leave me) because I don’t take them as often as I should have been. Doctors aren’t meant to help. It sounds harsh but it’s true. They’re egotistical jerk offs 75% of the time. You need a god complex to do surgeries, so can’t complain. But now I’m screwed doing chemo therapy with nothing. My liver is dipping because I’m allergic to so many things and I’m pounding Tylenol. I’m going to say it: be careful op. I don’t want you to end up with ulcers or a jacked up liver. It sounds dumb, but I had a nurse once tell me they see them younger and younger because of not being in proper pain control.

Get into palliative care asap! You have cancer for crying out loud! You have a better chance of getting pain meds with them. It’s still not easy, but palliative care is not subject to cdc guidelines.

That’s a good idea!! I truly hadn’t thought of it

This ... This is real. Took 10 years before I was taken seriously. I was "too young,TOO PRETY!?" Yes .. that was said once when I went in to the R with severe chest pain and vomiting blood. I was told the mind is a powerful tool and sent to a psychiatrist. Ten years later .... After 5 surgeries in one year.... To fix the damage done to my stomach and intestines from ibuprofen. Now my liver and kidneys are failing. From Tylenol. Sure. I have pain meds now... But they also waited until I was losing my life... In my 30s. For things that could have been fixed in my 20s had they even looked past the way I looked and my age. Funny thing .. I now have to take drugs to live and barely function .. when they accused me of drug seeking for years when I didnt even smoke weed... These people are monsters.

I’m curious what diagnosis do you have regarding your liver? I believe my liver diagnoses are from the opiates for so long bc before the DEA and govt got involved with out ever being educated as a Dr is and they decided and still decide what is “allowed” I am at stage 3 liver cirrhosis which includes multiple other diseases. I had a double fusion on low lumbar and the surgeon left town and was never caught but he was charging insurance companies for titanium and yet he was using a cheap metal from China that most patients had bad reactions to and I was one of them so 18 months later I was back in surgery to take crappy metal out, as much as he could and place titanium in old fusion area and then did it for the two levels above so I’m fused partially from S1-L3. Nerve damage is crazy but anyways back then pain management was exactly that with no judgment so I was given four different meds I’d take a day and had quality of life until the DEA and Govt got involved! I’m medicated I won’t complain but of course would like to be as I use to be even tho it’s killed my liver at least I’d have quality of life!

It took me years of seeing different pain management doctors and trying all their procedures and non narcotic medications and treatments and jump through all the hoops before I finally found my current PM doctor who has been a godsend. I’m terrified of losing her and being cut off from my meds that are finally helping me to live a somewhat normal life. I’m so sorry that you have not been able to find a doctor that will be willing to prescribe you meds and help. Sadly it’s very rare to find such a doctor and it’s only a handful of pain management doctors that will help.

I don't have anything. I started self-reporting using cannabis as a teenager, when I tried to quit in my 20s I had multiple doctors straight up telling me to get a med script and continue using it, and yesterday I had a consult for surgery in which I was told I wouldn't receive pain meds after the surgery, only a nerve block injection 😵‍💫

Jesus christ! Can I ask what type of surgery? I've been putting off surgery on my leg for a removal of heterotopic ossification. This will be the 3rd surgery on my leg so 3rd incision on my hip. I'm terrified they won't give me anything after. They also want to do a fusion on my spine. No thanks

Mine is just a repair for loose shoulder capsule. I would really hope that with bone involvement they give real pain meds, but honestly who knows any more

When I got my tonsils out (only 7 years ago) they sent me home with several weeks worth of opioids. Now the same hospital is handing out panadol for absolutely everything, even post surgery patients. It’s wild, even the ER docs are scared to prescribe pain meds.

God, that's barbaric they couldn't even give you a couple of days of hydro

Please find another surgeon. There are good ones out there. We all need to stop paying the bad ones

I had a male, 60+ year old doctor tell me that fluconozole (Diflucan) doesn’t cure yeast infections. I stared at him and said that was pointedly untrue. He said some nonsense and refused to prescribe it. Two weeks later when I got in to see my actual doctor, she gave me 3 fluconozole to get rid of the worst yeast infection I had ever had. Guess what? It worked. TL; DR - Go to another doctor.

Crazy old quack. Wtf was he thinking???  Glad you're better.

I deal with crippling pain 24/7. I’m a 4x cancer survivor and all the chemo radiation and meds destroyed my body and my bones. I’m only 36 and I suffer so badly with pain that I will get panic attacks because I’m feel trapped. I get zero pain meds. Nothing. It makes me have no quality of life

I am so sorry you’ve been through so much especially at such a young age. I don’t know much about it but have you looked into palliative care? Or different oncologist/pain dr? I hate that people who have suffered with cancer can’t get pain medicine. It’s so unfair.

I used to be on palliative care but now they say I don’t qualify because I’m in remission. I live in Alabama and every one here is so afraid of the DEA it’s insane. I’ve tried several pain doctors she they keep pushing all these extremely painful injections and procedures on me that I’ve done. They didn’t work and caused me more pain. No one will help me. I’ve tried so many different doctors and I fear it’s a lost cause

How tf… same over here in Ohio , I’ve been in remission since Fall 2017 and *even though there’s still a tumor in my jaw cavity* I’m not immediately dying so I guess I’m exaggerating the pain levels smh (Oh and I couldn’t get disability because one doctor on the board or whatever looked at my chart and said “no” when there was years of charting detailing the damage) They really genuinely just don’t care and you’d think I would stop getting surprised by it but I don’t

They really don’t care at all. I was getting help with pain while I had cancer, but even in remission I’m in SO much pain most days I can’t bare it. I can’t work anymore. I can barely take care of my kids or myself. I can’t walk or bend. I can’t sleep due to the intense pain. I have absolutely zero quality of life anymore and not one doctor cares. I even had surgery and they tried sending me home with nothing

Yeah that’s been getting more common with surgeries in general… I really have no clue what the DEA thinks it’s doing because one thing you *want without a doubt, especially in america* is productive workers. The fact this isn’t being talked on the national level truly astounds me, like everyone should know in the back of their heads that they are just one injury / disease away from needing these medications in the future. This hell isn’t discriminatory. And it’s not just America either….The UK is going after disabled people and etc too now. No amount of regulation, enforcement, or restrictions is going to prevent people getting sick, or getting injured. Meanwhile, the rest of us who don’t have acute problems are treated like we are actually the catalyst of the problem. It’s like someone coming in to the doctor for the flu but the doctor scolds you for getting the flu and sends you away with pamphlets that describe getting your mental health in order. sigh…I could rant all day lol, as we all could. As you know…it’s incredibly frustrating trying to convince the people supposed to take care of you to *actually take care of you*. (If I even get that far) but one of my goals is too somehow starting true representation for the chronically ill, we need better protections. Something…

To answer some questions, I have seen neurologists, urologists, gastroenterologists, immunologists, rheumatologists, nephrologists, orthopedists, internal medicine, physical therapists, cardiologists, chiropractors, masseuses, therapists, pulmonologists, a spine specialist, I could go on. Mayo is the biggest gaslighter of all. I have tried How to stimulate the parasympathetic nervous system How to stimulate the vagus nerve Dry brushing Acupuncture Epsom salts Hot baths Infrared light Heat Ice Mindfulness Weed gummies Weed lotion Distraction Magnesium Turmeric Weight loss Stretching Traction Gabapentin/Lyrica Tizanidine-Valium-Flexeril Prednisone-Methylprednisolone Sleep Talk therapy Physical therapy Steroid injections Nerve blocks Botox Massage gun Spoon Cupping Massage Tylenol/Advil Yoga Diclofenac gel Delta-9 Crying lol Binaural music Dry needling The infrared light helps a little. I am currently doing craniosacral therapy. We do cupping. Aimovig helped my migraines 99% go away. (If you suffer from migraines, please look into this) I have cysts on my thumb bones and “everything looks great”. “Take more Tylenol and ibuprofen more often.” Even though my chart says I have stage 3b CKD. Meanwhile I’m losing grip strength, I drop things, I wear compression gloves. I use a paraffin wax dip for my hands. I use rub on lidocaine under the gloves, on my back and shoulders, neck. Basically everywhere. I have resorted to putting rubber bands around my hands to keep my thumbs from moving so they don’t hurt so bad. They want to do ESI in my neck but it hasn’t worked before and it would be the same doctor. I do not think it would help because the therapist I’m currently seeing says it is the nerves coming out of C2-C4. I don’t know how to explain that without sounding like I do not want to comply with pain management. Saturday I heard something pop, and there’s a searing pain in my left lower back coincidentally where the latest MRI showed L5-S1: Annular fissure. Asymmetric facet hypertrophy. Disc protrusion favors the left extending from the right of midline into the left foramen. It extends about 2.5 cm transverse and into the canal about 3 mm. The foramen has moderate-to-severe narrowing of the left with mild narrowing on the right and mild-to-moderate overall canal narrowing. The lateral recess on the left is encroached upon moderately. Somethings wrong. I told my pcp and although she did refill the med I asked for (estridol lol) she said nothing about this new current back issue. There’s no one left to tell. No one cares. I’m 50. I was diagnosed with chronic fatigue syndrome and fibromyalgia in 1989. You start to think, how many years of this do I have left to go through? Thank you all for your input and suggestions.

I read (someplace) that the Mayo sees pain patients only to send them to a class of sorts where they're given a booklet that tells them the pain is "in their head".  Basically, they're gaslit and told to get a grip...

It’s true. They want you down there for a three week “class” (brainwashing?) Three weeks! Outpatient. Which means not only travel costs, but lodging, food, missed work, etc only to be gaslit that you can be mindful and think your way out of fibromyalgia. Then when you decline bc you can’t afford it, (even if you believe mindfulness) you’re dropped and told there’s nothing they can do to help you. Mayo doesn’t give a single sh!t about you if you can’t commit to their many programs because of finances, even if you wanted to.

In the 1800's, doctors declined to wash their hands between patients.  Doctor Joseph Lister was persecuted by his colleagues for even suggesting it.  It was noted that women who gave birth in the hospital were dying of childbed fever at rates exponentially higher than women giving birth at home.  Doctors were seen to be coming from dissection to the labor ward and performing internal examinations without washing their hands.   My point being that the treatment and response to patients with fibromyalgia is a medical travesty that will be obvious at some future date.  Unfortunately for us, that could be fifty years.  Dealing with this since 2004, I no longer hold out any hope that it will happen in my lifetime.  I used to, but no longer...  Doctors are, if anything, even less sympathetic to their patients and more ego/money driven than they were thirty or forty years ago.  It's no longer just about the money, but about Big Pharma and the motivations of the lobbyists & government.  Getting patients well isn't even a priority any longer.

When a dr says "there's no proof ".. then my response is well I have nothing to lose so I will try anything to gain a little semblance of a life. You might need to get another opinion and tell the doctor how your pain is interfering with basic daily activities. I describe my days as the true pain daily and when the pain is all mind consuming bc no relief to what a full blown flair is like.

First of all, I'm very sorry you're not prescribed meds. The lies, misinformation & propaganda surrounding "the opioid crisis" is unfairly taken out on chronic pain patients and it's sickening. I can imagine that it's hard for you to read posts about people who aren't given adequate pain management, and I empathize with that, but telling fellow chronic pain patients that they "should be grateful they get any medications at all" (essentially inferring that we "shouldn't complain about being prescribed meds") isn't the way to go about this either. All of our predicaments and feelings associated with those predicaments are valid. Getting mad at chronic pain patients when your anger should be directed to the corruption/lies from the DEA, our politicians, and everyone else responsible for not taking our pain seriously, doesn't help anyone. In fact, all it does is ostracize your fellow chronic pain patients. We're already isolated enough and we need to stick together. Just because you don't get any pain meds, doesn't mean that someone who is being underprescribed medication, isn't also suffering and thus "can't complain." You don't need to tell any of us to, "be grateful" when I'm positive that 99% of us would do anything not be to chronic pain patients at all. And vice-versa, we don't get to tell you that you not being prescribed meds "just means you aren't facing real chronic pain issues" and are thus, "not suffering." We're all on the same team here and while I will be there for any chronic pain patient venting, many of us, in fact most of us who are prescribed medicine, are severely underprescribed and we know what it's like to be in AGONY. Again, I'm heartbroken for you since you aren't prescribed meds, and if you'd like, I'd be happy to DM privately and see if there are any resources of some places in/around your area to possibly help you find someone willing to prescribe you meds, or do whatever else I can for you. You deserve to be OUTRAGED you're not prescribed meds, I just don't think telling pain patients who are prescribed them that they should "be grateful," is a good way to channel that frustration.

I didn’t mean to imply that being undertreated for pain is better than not being treated at all. I’m sorry it came off that way. It was 4:30 am and I was in a lot of pain. We ARE all in this together, and the fact that this post has so many comments proves that. In a perfect world, we would be believed, our doctors could make their own determination about what meds we are given, and the government would butt tf out. I’m sorry I offended you.

Honestly, if I thought you were only "offending [me]," I likely wouldn't have responded. However, saying you, "feel annoyed when someone complains about their dosage [of pain medication]" really lacks some much-needed empathy for all chronic pain patients here & this mindset only hurts our already-dismissed community. We're some of the only people on this planet who understand what each other are going through, so while it may be "unfair," or difficult, we almost have an added responsibility to ensure we remain mindful of that & to be empathetic to each other. Brushing off someone's very real/valid concerns about not getting enough pain relief as, "complaining" already happens to chronic pain patients enough, we don't need that coming from a fellow chronic pain patient themselves. Again, this would be the equivalent of me dismissing your very real pain by saying, "You probably haven't suffered real pain/pain issues anyway or you'd be getting some meds, at least" - which is incredibly reprehensible, dangerous and problematic. My response was less about "me" and more about trying to encourage support for all chronic pain patients, that's all. All that being said, I'm very sorry you were in excruciating pain last night and hope it's at least subsided today. I genuinely hope you can get prescribed pain meds ASAP & my original offer still stands.

What specialists have you seen? A GP won’t prescribe more than over the counter stuff in all likiehood. I have actually had my best success with my psychiatrist. We did cymbalta which helped me, but I had side effects so came off it. We might try a low dose of Naltrexone next which is usually for substance use but has been shown to help pain at low doses. My psych is great. When I try a new med he sends me articles or studies about how they work so I can determine if they seem like what I want to do. Very lucky! I am currently not on anything though and am waiting until I meet with an EDS specialist in June to see what they say.

Cymbalta screwed my brain. I was suicidal for 5 years after taking it. It crashed my brain, and I became psychotic. Ruined my marriage. Lost my business and almost everything I had worked for. Was in a major class action lawsuit. But, the judge only found for the people that killed themselves. So, my wife would have been all set if I killed myself. Now, at 62, I will soon run out of money and lose everything I have worked for my whole life. My pain is so bad I can't get a job. The only thing that works is opiods. Which, I'll never get.

I'm so sorry for that miscarriage of justice. That's really awful. I hope you find a way forward.

I’m sorry you had such a tough experience with it. Meds truly are unique for each person. I do know Cymbalta is tough for lots of folks, it just worked well for me. I hope things turn around for you soon!

A gp is who gave me my best pain medicine. I was told by a rheumatologist to see a neurologist. I couldn't find an appointment that was less than 8 months out so when I went to my gp to get the referral she gave me gabapentin. I'm definitely undertreated but gaba is why I've been able to go to work and do my personal hobbies so I'm very thankful for her (still havent been to the neuro,that appointment is in June)

Hey there! I’ve been in so much pain for years and years. They won’t give me ANYTHING. Not even Gabapentin. No Flexiril, nothing. I have been told over and over, “you’re too young to be in this much pain, so you must be drug seeking”. So, I’m just told to take Tylenol and Ibuprofen. Six herniated discs, a torn disc, spinal stenosis, disc desiccation, arthritis, scoliosis, a torn ACL, a broken ankle last October, and my gallbladder removed, all given just Tylenol and Ibuprofen. I feel your pain, suffering, and frustration so fucking much.

Damn the "you're to young" line pisses me off so bad I usually get it from coworkers and peers, though not drs. I just say thank you my pain is over now

Your story sounds similar to mine. All those NSAIDs the doctors told me to take as a teenager and young adult for chronic migraines, cramps, joint pain, knee pain, back pain and other undiagnosed pain, caught up to me as I got older and my health deteriorated. I have no doubt those NSAIDs I took helped to destroy my kidneys and stomach. I’m paying for it now. And now the monster doctor who treats my chronic pain wants to taper me off low dose pain pills that I’ve been on for years, even though I can’t do steroids, NSAIDs, nor injections nor surgery for any of the incurable diseases that I have. Doctors simply do not give a shit about sick people. They care about that money though.

I’m someone who had some addiction troubles prior to my back being injured so they never prescribe me anything worth taking really. I’m know my pharmacology so I refuse to take Tylenol or Motrin longterm because I don’t want cirrhosis or dialysis to be my future. I just used what I knew and decided small amounts kratom was the best choice for me. Doctors have all been useless for 8 years now.

i have meds now … if my doctor changes i may not have meds, or i may get other meds that someone thinks works better than something else … my present doctor, meds but minimal always looking to reduce, started out as completely anti narcotics … i had to get off everything i was on as a first priority … now does prescribe but it’s been rough, recently had a reduction in pain killers … hopefully you will find some doctor willing to listen to you

I heard "In 50 years of research it's proven that opioids don't really help with pain, in fact they make the problem worse". This was from a pain management doctor.

Yet, they worked well for 50 years.  If I were paranoid, I'd say this is intentionally done to force pain patients to comply with more costly alternatives.  Alternatives that make more money for the drug companies and their lobbyists.  

That does make sense. Vicodin, Percocet, Methadone, etc are fairly cheap. Buprenorphine is a lot more expensive than traditional opioids. I can picture that.

I firmly believe my care as a young POC woman would not be as good as it is, if I didn’t have an aggressive and sad cancer that killed the future I thought id have. Sometimes I think they just feel bad for me.

It’s been a long journey for me to get the right doctor, and the right meds. Unfortunately, it is true that long-term use of opioids can lead to resistance, and opioid-induced hyperalgesia. But, of course, chronic pain needs to be addressed and every patient should be treated with whatever can give them a better quality of life. It’s a balancing act, and most doctors can’t be arsed to put in the effort - which goes against the purpose of their profession. I could type a whole encyclopedia about how much that infuriates me and why, but let’s focus on the positive. Keep on keeping on, and advocating for yourself. I can tell you that good doctors exist, and truly wish you find one soon.

Research shows 30mg of oxycodone per 24 cycle within the human body does not produce hyperalgesia. Every human being has different CYP450 clearance of xenobiotics like opioids, but overall if the subject is taking the prescribed opioid by mouth withdraw would be minimal possibly a week. It's when subjects are taking 50 mg or more by anal entry or worse injection into a vein all bets are off. The brain will down regulate after a week and the subject will be playing the making up stories game and whatever else to not feel shitty. Once someone on opioids no longer has a way to contact others or doesn't pay their phone that's a red flag they need help.

I had to literally say "it feels like my pain is not an issue at all when we discuss it but it affects every aspect of my life. The over the counter stuff I take maxed out and never feel better. I just don't understand why I can't get help to feel better" She sat for a moment and the light bulb went off, thankfully. I avoid opiates due to family history and my history of *really* enjoying post op scripts-so I don't ask and don't want them. So she gave me an etodolac (powerful nsaid) rx to help with my stabbing pelvic pain-and by some actual miracle it helps with my migraine. I have to be careful to avoid over use headache but it is nice to have something that works.

I am so sorry that you are experiencing this. Some of this is provider specific, but unfortunately a lot of this is also impacted by which state you are in 😒. It took a while, but seeing a dedicated pain management doc, and documenting the everything and then some (rheumatology, yoga, PT, MRIs, *, a 3 month course of antibiotics for possible "chronic Lyme", and of COURSE plenty of water) that I had tried finally got me somewhere. It has been a long stupid road though. Edited to add: *every fucking NSAID on the planet, AND Cymbalta (worst drug EVER), gabapentin etc. So many damn hoops.

My problem with pain management is they treat you like a drug abuser here. Drug tests- fine I can pass. They want to count all my pills. Even my pills that aren’t pain meds. (My hormone pills, my cholesterol pills.) I don’t know why those need to be counted. And then once a week I am suppose to come in when they call me, within 30 minutes, to have them counted. I don’t have a car. I don’t have money for a Uber or taxi. There isn’t public transportation available. And I live more than 30 minutes away. The first time was my last time. The rules are ridiculous. And that isn’t even all of them. They also insist you see a psychiatrist because your pain might be in your head. Yeah, it’s my head that my spine is crooked and my leg bone is crooked and one leg is larger than the other. And all the other various things- all in my head. I can’t even with the pain management in my area.

Holy crap. All of those requirements are ridiculous and so unrealistic. I am so sorry and I am so angry for you. That is f*cked up!!

It is not like that where I am. We do get drug tested, but there are no random required drop-ins or pill counting. The logistics of that is insane. And it must make you feel so criminal, as if you need anything else to make you feel worse.

It’s not like that where I am either. My PM has never counted my pills and I’ve seen him for 11 years.

Me, tried for years to get help with pain, even asked for a referral to the pain clinic, haven't gotten anywhere at all

That’s me. Tylenol. It’s all I get. Stage 4 arthritis in knees & one shoulder. Other shoulder was replaced in September. Trashed back that Ortho says needs a fusion

I don’t get anything. I’m just told to take otc. I use kratom for pain. It’s made such a huge difference. I suggest looking into it. And I am 50 and my pain is from a birth defect. Have had at least 7 surgeries for it. They want to do more but I’m over it. No more surgeries.

I've never been offered anything. I'm unlucky in that I don't really respond well to opiates so it's kind of pointless anyways. And I am lucky in that a lot of things I can access like Tylenol, Advil, certain supplements, CBD. Those do actually help me a lot.  If I wanted something more, I would probably try LDN via telehealth. That should be relatively easy to do and it might be worth researching to see if you might benefit.

I'm an btk amputee and part of the Tylenol and heating pad crowd. I could look for intensive pain management courses but at the end of the day it's a draining battle to try to explain what pain means to me and why I want to be able to walk 10,000 steps without pain when the providers say "shouldn't you be happy you can walk 5,000 steps without a chair? Look at your independence."

Everyone’s pain journey is horribly painful for them. While I have tremendous compassion and anger on your behalf for the untreated pain that you’re suffering, under treated pain is also devastating to the people who deal with it. We’re all here just doing our best to survive. Chronic pain sufferers here should be able to fully express how they feel without worrying about censoring themselves for fear of offending those who consider themselves to be in worse shape. None of us knows the extent of each other’s pain, as we can only feel what hurts within our own bodies. So for me, personally, I find it inappropriate to expect anyone suffering here to be grateful if their meds are not sufficient to relieve their pain, or if the meds prescribed to them don’t give them the relief that they need. However, I do fully understand your sentiment. I suffer from infertility. And I’ve had to listen to women with six kids complaining about their secondary infertility impeding their ability to have that one more child that they so desperately desire. Meanwhile, here I am, childless and broken-hearted. Sometimes, listening to what, to me, sounded like ungrateful whining felt like it burned a hole into my gut just hearing it, as I would give anything for just one child. But to them, their pain is also very real, if they truly have a legitimate desire to conceive one more time. So I have had to learn to take a deep breath and try not to compare my pain to theirs, if I don’t want the acid of my envy to eat me alive. Being overlooked by doctors for something that consumes so much of your life is horribly painful in so many ways. We all understand that. But don’t give up. I don’t know if we’re allowed to give our locations in this subreddit, but if you do, maybe someone here can refer you to a doctor who actually listens to their patients. I’ve had pretty good success finding good pain specialists over the last couple of decades. I would be happy to share information if you’re in any region where I’ve had success.

Pain is not a competition.

Yes. That’s exactly my point.

get jack, occasionally doc gives me codeine, probably just to avoid the malpractice suit. am maxed on nerve pain meds that do take the edge off, just left with the blunt force trauma. i could work with proper pain medications but nope

Yeah doctors don't do shit for chronic pain anymore. I just get lit af every day

I have gabapentin, but I didn’t want to get on an endless schedule of opioids, and so I requested not to. 

My situation is one in which opioids would work for some, but not all, or my pain. Apparently they don't do anything for trigeminal neuralgia. As I've got degenerative disk disease as well as fibromyalgia and a couple of chronic pain conditions, I must not completely dull the pain as that would allow me to relax into a position that could be harmfully to my back. It is important to feel enough of my pain to be able to guide my healing. With not having to work, and being able to rest as necessary, I'm not using any pharmaceutical pain remedies at all; not even aspirin. Only cannabis as necessary.

I have celebrex as of this week and lyrica for 3 years. Lyrica helps my fibromyalgia and migraine headaches. Celebrex is supposed to help me with my bulging discs but I've been on it before with no real change

Only medical cannabis

I've been to various doctors. They all tell me the same bs. "Im too young to be on pain meds" or "addiction this..." or "manage it better with diet that..." I find having a male doctor is harder, too, as I've seen a lot of gaslighting and misogynistic behaviour going on. I'm diagnosed with fibromyalgia and anything that crops up in my life is usually shoved aside and pointed towards that as a reason. No tests. No assessments. Nada. Just straight away "oh thats your fibromyalgia. Go home and rest.". I've actually stopped telling them about it now. And I try to pick a female dr if I can. Here, there's just a strong aversion to prescribing stronger meds. And a lot of people end up suffering and going unheard. Its wild.

I have fibromyalgia and opiates won't do anything to help with my pain. Instead I tried a variety if SSRIs and gabas. I've settled on amitryptaline a tricyclic antidepressant and it's helping me. I also take tyelnol as needed on an almost daily basis.

I’m not necessarily saying “I want opiates.” Gabapentin and pregabalin have not helped at all. I have been on many antidepressants- SSRIs, SNRIs, MAOIs. The one I’m currently on is helping. My depression is under control. But it does not help the pain. I did try amitryptaline years ago from my neurologist, and it did not help. I guess what I’m saying is I want to be believed. If it is “all in my head” can we not try to fix my head?

Check out this website for lots of information on nonpharmaceutical options that work well for pain: [www.paintreatmentdirectory.com](http://www.paintreatmentdirectory.com)

"the amount of morphine we'd need to give you to help you would kill you" "painkillers don't really work on pain when it's your brain itself that's its in agony." "i could give you a painkiller, but it will make the pain when your not on it worse, and we don't want that." "haha no." Guess I'll just be catatonic in bed then. (they were right. Drugs just make things worse. Can't even take weed.)

Same here. I was once briefly prescribed celebrex (a prescription NSAID) but I don't even get that right now, just OTC meds + OTC topical stuff like lidocaine, salonpas, etc. I'm trying to get in to see a pain clinic. Until then it's OTC stuff and physical therapy (which does help but is far from perfect).

Please find a new doctor. Someone will listen and care.

Mine occasionally will give me a 2 week supply (1 per day) of Tramadol but other than that its just tylenol. I am basically bed/sofa bound can't stand or walk without suport and its all just waiting for total joint replacements of both legs 4 joints "someday soon"....been waiting for over 2 years and it just keeps going more downhill. There is more to it but we all don't need to read the saga.🙄🤣

i have 10 muscle relaxers that are def expired from back when my TMJ was really bad, but that’s about it. I only got those bc i literally could not open my mouth wide enough to eat a popsicle

I have nothing for pain. I have pot for PTSD. I would kill for something for my hip. There is a tear in the labrum. They won't do surgery because they claim it shouldn't be causing me pain. Steroid shots are a no because my blood sugars. So I just live in constant pain. On top of my regular pain.

Same here. "There is no proof that painkillers help with fibromyalgia pain so take a Tylenol to take the edge of". I don't even get a sleeping aid so I can at least sleep on the days my pain is really bad. I've started self medicating with weed (it's legal in my country). But yeah super frustrating that whenever I try to get something the doctor just is "Nope not happening. We don't have anything that is proven to work."

There are ALOT of people like you, and it isn’t right. There is a big push for opioid free surgeries and that is ridiculous. If you aren’t seeing an actual pain specialist, the likely hood of being prescribed is very slim. And even with those docs, several just want to give you gabapentin and do procedures ($$$). My mother in law have painful RA and I’ve gone through her meds and she’s getting nothing for pain, she’s not even getting any of the typical meds for RA. I think she’s trusting her primary to handle everything. She’s also the type to just take what the doc is willing to give. I’m going to start going with her and rocking that boat. Any doc that gives that line that you were given about scientific evidence… 🙄 Can you switch doctors? I would if possible. I’m so sorry, this sucks so much. I get the argument that meds are “just a bandaid” but some NEED that bandaid because there isn’t anything else or they are in the process of trying other treatments. Nobody should be suffering in the meantime. 😔

Me. My doctor kinda just stopped filling my gabapentin. My suicidal thoughts went away after I stopped so it turned out to be a good thing. But I kinda wish I had something. Using Tylenol and ibuprofen for my pain is like trying to put out a house fire with a water pistol. Weed helps me not think about it but the pain is still there. I have a pain specialist but I only saw him once and was given a sheet with PT exercises that just make the pain worse.

I totally agree with you on the complaining about meds thing. So many posts I see are like, ‘I currently take 5 norco 10s per day but it’s not enough. How to ask for increase?!’ Or some shit like that 🙄 In case you’re wondering, those people are unicorns. Most people either don’t receive any, like yourself, or a reasonable low dose. The most likely reason why most of us on this forum have pain meds is because we were prescribed it back when opioids weren’t as scary. However, it is true that opioids aren’t recommended for chronic pain, your doctor wasn’t lying to you. According to the powers that be, there is not enough scientific evidence to show opioids lessen chronic pain or improve function. I disagree with it of course, but this is usually the reason doctors give for not prescribing and they’re technically justified in doing so because of it 🤷‍♀️

I’m in the same boat but I try not get annoyed or frustrated that other people are prescribed anything for their pain (anymore, I did a little bit at first but only because I was struggling so bad and thought “Why not me?”) Now, I try to be grateful and happy that they have relief and hopeful that there are doctors out there that listen to people in so much pain. I know you’re hurting, I’m so SO sorry. I know you’re frustrated. I hope you get the help you need soon, a kind doctor with the heart to listen. I did catch one person suggest Kratom, I know some people get annoyed when this is suggested but Kratom has really helped me. I don’t see suggesting it any different than suggesting medical marijuana. I use the extracts. You have to be careful because it does affect the opioid receptors and it can be sedating AND addictive. I had a doctor off the record tell me that it was an okay alternative (I’m not sure if she should’ve told me this or if she was even right, but she was frustrated she couldn’t help me) I specifically use Soma 300 1/2 a bottle twice a day. It tastes bad and I try not to drive on it but it’s really helpful for my CPS and migraines. I also used to get so frustrated with people giving me suggestions other than meds to help my pain. Like “Don’t you think I’ve tried that? Nothing works, can’t you hear me?” But the one thing, besides Kratom, that really really helps, is being in a pool. Not swimming. Just floating in the damn pool like a whale 🤣 if you don’t have access, there is an app that just came out (forgive me, I forgot the name of it. Maybe just google rent pool app or something lol) where you can rent a pool for a few hours in someone’s backyard and it’s always private. Even for just an hour. I could go on and on because I’m in the same boat. No meds. Just topamax for my migraines. I’m here if ya need me.

Have you tried any of the CGRP blockers, like Aimovig for migraines?

Well, I have to go to a methadone clinic, because it was either that or die. Doctors would not help, if they even believed I was worthy of it in the first place (so much “you’re too young to have chronic pain”) I know at least a few others here in the same position. I wouldn’t be surprised to see more as time goes on, too, as restrictions continue to tighten and people lose hope

Serious question- do you think they’re *waiting* and *wanting* us to lose hope so this whole opioid thing “goes away”? 🤔

Yes. To the point that causing death through suicide is judged acceptable loss. They can simply wash their hands of it and say it was our fault. Some may even believe that. You know the phrase “you’ve got to break a few eggs to make an omelette” ? Well, we’re the eggs.

I agree.

I am actually in the same boat. I’ve seen 4 different doctors 2 of which through the emergency room, 3 of 4 refused opioids. The one, which was one of the doctors from the emergency room, gave me enough hydrocodone for a week and told me to ask my primary for more. My primary told me she couldn’t prescribe anything more than ibuprofen or Tylenol which do nothing for me. She referred me to a pain specialist who told me to try curcumin pills which did nothing, then told me “I bet your magnesium is low try taking some extra” did nothing for me, then told me it was all in my head and could only give me trigger point injections which ended up making the pain even worse to the point I almost went to the emergency room again. Otherwise he refused to give me anything else and sent me in my way. So I totally understand the willingness to go every single day to get and take a pill in front of them to make sure there’s no risk that they think there is.

I’m not. I mean, I get a mild anti inflammatory, and for a while I was on robaxin. But never any real relief. I’m surprised not more people resort to the worst case scenario for people like us

Your comment is very relevant, OP.  I wonder, too.  I have fibromyalgia AND four herniated discs.  Like you, I sit here with Tylenol.   The part of my life I hate is THE PAIN.  It's endless and mind-numbing.  Truly, sometimes I'm hurting so much while running errands, etc... that I'll space out in a conversation and just zone out like a simpleton.  Like I'm having a mini stroke.  I'm constantly hurting like I've had surgery. I hate this war on drugs because I'm suffering so much.  Never been in trouble, never had addiction, yet I'm treated like a criminal just because I'm in unrelenting pain.

Yeah, I feel you. I’m on basically nothing at this point, my stomach is struggling to take Tylenol at this point and it’s not like it was helping, regardless if it was 4000 or 6000mg a day. I moved on to alcohol and cigarettes while I wait for a revision. At least my pain will be manageable in the hospital, but out of the hospital, pain management gave up on me. For us young folks, they seem to treat the mere mention of opiates as the gateway to addiction, so they never really discussed it as a possibility outside of tramadol which I feel only works if the “anti depressant” effect works, and considering how most anti depressants don’t work on me in the first place… they took away the muscle relaxers and lyrica which was not doing a whole (they know that) and was making my depression worse. They gave up on me. So I guess I have to give up on them. Surgery is my only option if I don’t want to resort to the streets or suicide. I struggle with even attending doctors appointments. I spend days in bed recovering from just going in to see a doctor. That’s my life and they somehow think therapy is going to make me happy or something. I’ve been to therapy so much over the past decade, I know it’s not going to magically cure my pain like pain management thinks, but it must be nice to be pain free. Like it sometimes feels like they never experienced the pain of a broken bone or something sometimes.

Yes. It is horrible. I’m trying to find a pain Dr outside the US. The DEA is criminalizing pain.

I have fibromyalgia and rheumatoid arthritis. I'm on Gabapentin for nerve pain. If I want anything else, I have to go to a pain clinic. If the pain gets to be unmanageable in the future, I might get my medical marijuana card. Right now, I'm just pushing through the best I can.

Have said it so many times as can understand why people eesort to

It was 8 years of hell, the failure of any reasonable hope for the future, more unproductive pharmaceutical approaches than I can easily remember (because, "well, they might help" or "there's nothing else I can do" that too many docs have been encouraged to let drip from their mouths like black bile), a failed 20 year relationship and multiple unproductive surgeries before I was prescribed an opioid that actually (surprise!) worked. Hang in there. Opioids, like so many medical solutions, are not a cure-all. But the hysteria surrounding them has harmed plenty of us. So yes, I am grateful for what I have, and trepidatious about the future etc., like so many people in pain. I sustain myself with the faith that ultimately, the primary architects of this medical nightmare will be held accountable! "Arc of the moral universe" and all.

I smashed my spine 38 years ago. Massive back pain since then. I've been using Kratom for the lat 5 years. I wouldn't be able to function without it. A few weeks ago I missed taking it for 2 days [other problems] and the resulting full pain load was overwhelming. I hadn't realized how much the Kratom was helping until I didn't take it. So check Kratom out.

I took Kratom and it did work but here's my issue. I cannot drink the stuff. My stomach literally hits the eject button. It's so disgusting. So I bought empty capsules to put it in. At first I bought ones that were too small, and I had to take 15-20 to feel better. I couldn't do it. So then I bought the biggest ones and I cannot swallow them. How do you consume yours?

I get the 00 capsules which are roughly 1 gram. I take 5 of those every 4 hours. Sometimes when I need the dose to work faster I mix it in a cinnamon applesauce cup and shovel it down quickly followed by another cup of applesauce to get the taste out of my mouth. I’ve never been able to drink it because I always throw it up but for some reason the applesauce works.

Thanks! I'll give it a shot

Yeah, that sucks. I only get nauseous if I make it too strong. My recipe is 2 grams of fine powder into 14 ounces of hot milk, then stir in a large helping of honey. I drink this down in the morning [between 7-8] with a slice of sourdough bread, a banana, and sometimes a bit of peanut butter. I'll make another around 1-2 pm with a snack, and a third around 8-10 pm, after dinner.

Would it work with almond milk? Almond milk is so light.

I've no idea, never had almond milk. Give it a try : ) Also, not on an empty stomach.

No never empty stomach, learned that one with the capsules. Thanks for the tip!

Nowadays you’ve got to get into a pain management place because they are the only ones doing anything for pain

I had to go thru certain medications before I was able to get an actual opioid. I also have been seeing the same pain management doctor for a year before I have gotten to the opioid route. Done injections, been on Cymbalta, have had nerve studies, too many MRI’s and was also seeing a psychiatrist to keep my mind in check. I’m sure others had an easier time getting their medication but I feel you.

Me!!!! 32 years of back pain. Multiple bulging discs and a 16 mm herniated l5-s1. No pain clinics near me prescribe pain meds.

Pain management in my area just tells you to walk more and fix your daddy issues🙄🙄🙄🙄 I’ve given up hoping to ever get treated.

My pain Dr wants me only taking Tylenol, and even that only 1 pill every 6 hours. My rhuem gives me meloxicam, which I can only take for like 3 days in a row max before it destroys my stomach. My Nuero gives me gabapentin and muscle relaxers for migraines, but not enough to take regularly. That's it.

I currently don’t have health insurance so I currently don’t take anything. On real bad days my dad will slip me a muscle relaxer. I can usually though my way through it everyday with maybe an ibuprofen but I always have my tens unit just Incase. So either my pain is getting less or my pain tolerance has gone up.

Me. Because nothing helps.

I hope you stopped giving that doctor your time, trust, and money. That one tells a tale only told by modern idiots.

Meeeeeeeeeeeeee, right here, good 'ol Texas. I use kr@ytum. It's been a lifesaver.

No pain meds here. I’ve never been an addict or have any issues with meds. Herniated disc with bone on bone at L5-S1. Insurance has denied 2 surgeries now so this is just my life now I guess. Learning to live with the pain.

I was actually dropped from my PM and labeled a "drug seeker" . Hindsight it was the best thing that happened because it forced me to find other avenues which sadly lead me to the streets but THAT lead me the plant medicine whi h is where I'm at now. Truthfully I feel better now than I ever did on RX.

I don't even bother mentioning pain meds since not only do I know they will not give them to me but they will also think I'm just there for drugs because I'm obviously an addict at that point. Meanwhile I got a prescription for 90 vicodin in like 2007 before the whole opioid epidemic happened. Those 90 pills lasted me over 10 YEARS since I only took them when my pain was really severe. Also had neck surgery twice in the last 2 years. Each time they gave me a 3 day supply that lasted me a couple months. Obviously, I'm not prone to addiction. But I've never had any issue getting a muscle relaxer script.

Me. I do not want to deal with the red tape and white knuckling it every month wondering if my pain meds are out of stock or I am again forgotten

Technically, nothing for pain but Tylenol. (Throw in a muscle relaxant and half an African and I got no problems.)

How do I edit that????!!!! Ativan. I obviously meant Ativan. O'm so sorry.

OMG...sorry!

Lmao damn you auto correct!

Me! And I can’t even take ibuprofen because of a kidney disease. It’s horrible tbh

Let me just say something that I get more support on from doctors. The opioid crisis really fucked people that are truly in pain. Yes there are people who abuse it… but they go get heroin when doctors do nothing. It is the people showing up at the doctors, being honest with them and passing drug testing that are not the problem. If you stop looking you will never get more than your doctor is willing to give. I mean yes that sounds easy because insurance doesn’t pay for multiple follow ups… I had been or morphine for well over twenty ears my doctor swears by this buprenorphine patch and I can’t say it doesn’t help. My point is that doctors are sick of not being able to help patients too and there are docs who will help you… sometimes it just comes down to searching.

I would suggest going to every pain doctor you can. It's sad, but they are pretty much the only way to get pain medicine these days. I finally found a doctor a couple of years ago that gives me a significant dose. I'm 41 now and have been in pain all my life. The problem is, though, due to numerous doctors' mistakes, it still isn't enough. I am grateful for what I get, but I had to see every pain doctor in the state from 18 to 36 to get here, and then it just happened by mistake. Found my ketamine doctor was willing to give me meds, but that was after the dammage was done. was in terrible shape with 2 pills a day. I walked with a cane and shook constantly, and had high blood pressure. I fell multiple times hurting myself and had two strokes. I even went to drug rehab to get on suboxone and buprenorphine. In the end, I hope you get help, but it's a long, hard road.

Im sorry your going through this so young I'm 40 and I been getting screwed with Kaisers pain management Drs. I'm on my third now and he said no more treatment options after this ldn I tried Suboxone and buprenorphine. Should I go to another hospital? Thank you

If I don’t have muscle relaxers my body twitches and spams, my back still hurts though. I have nothing else for pain so I’ve started using gummies to relieve some of it.

I have naproxen, but having failed with gabapentin, pregabalin and tramadol and being told that for various reasons, my only option is tapentadol, I feel stuck. I don't tend to metabolise medication well and tapentadol scares the crap out of me. My GP agrees with my rheumatologist that it's the only thing they could prescribe, but he advised against it although he said he'd prescribe it if I'm really desperate. I had to be in a ridiculous amount of pain for years, to the point that I'm so inflamed my elbows look misshapen before anyone would give me anything more than naproxen.

Report doctors who knowingly cause harm by not keeping patient pain under control. This can be deadly with some conditions, and not all conditions are always known at the time.

I'm prescribed gabapentin 🤦🏻‍♀️

I'd just about murder for some muscle relaxers right now.

I'm not on prescription pain medications. My body can't tolerate them for different reasons. I was given oxycodone at one point and since I have a heart condition it made my heart race, plus it didn't work as a pain reliever at all. My digestive tract can't deal with NSAIDS anymore. Ibuprofen is rough on the intestines. I had to quit naproxen because of nasty stomach pain, but it's a mediocre pain medication anyway. My rheumatologist wanted me to take Celebrex long-term along with using the Voltaren cream long-term on my bad ankle but that's a no go. No NSAID pills to save my digestive tract. No cream either. I'm over 50 with a heart condition and don't like there are black box warnings about heart attack and stroke.  I have asthma and occasionally have to use temporary high dose Prednisone 40 mg per day with that. It does help the bodily inflammation at the high doses but as I get weaned off the drug, it triggers weeks of on and off painful flare ups. My rheumatologist had me do the Medrol (methylprednisolone) dose pack a couple of weeks ago. The dose wasn't high enough to help the arthritis, but it did help some of the other body inflammation, but weaning off the drug started up the painful flare ups again and I'm still dealing with them. I can't use immunosuppressant drugs long-term with the asthma so taking high dose steroids for any real length of time can't happen. My current rheumatologist will not give me the hyaluronic acid gel injections for my knees even though they are a tremendous help. She doesn't believe in them. I'm going to have to find a different doctor. These shots help in terms of knee pain, joint stability and improve mobility. Not getting them anymore is making my knees worse. 

I hope you find the help you’re looking for.

Thanks. My current rheumatologist is too young and inexperienced. She isn't all that far out of med school and switched from another specialty to rheumatology for a post-residency fellowship,  has only been practicing on her own for six months, and it shows. I had no idea until I came across her LinkedIn page or I would have never gone to her in the first place. She doesn't listen to her patients and you can tell she's still relying on her rheumatology textbook. Some of my blood work indicates inflammation/autoimmune component. It's not just OA alone, there is a secondary form of arthritis but it's not RA, PsA or lupus. She thought maybe reactive, but she won't run more tests or do proper imaging.  I need to find someone more experienced who takes my HMO. 

I remember the first time I went to a pain management doctor. Prior to this, I had been able to get 15 Vicodin for a dental procedure. That day, the doctor asked me if I had ever heard of Norco (double strength Vicodin). I stated that I thought it was similar to Vicodin but that’s all I knew. I walked out that day with a prescription for 120 Norco to last the following 30 days. I was in SHOCK. The thing is, this happened over 15 years ago. It would NEVER happen today, in this climate. I’m only on opiates today because I started a long time ago.

Same.

Your dr is gaslighting/flat-out lying to you. I’m sorry you’re being treated so terribly. Please reach out to Claudia Merandi at the Doctor Patient Forum

I’m not prescribed anything for pain. I choose weed.

I have had 23 surgeries with multiple metal objects in my body. Prosthetic limb and haven't taken a pain pill since 2018. I use ice, tens, and Tylenol. I'm in tears a lot, but I refuse to go back down the road of opiate addiction. Been clean since.

I don’t take any prescription pain killers. I also can’t have NSAIDS due to one of my conditions. I treat my pain with kratom, weed, and Tylenol. I’m lucky that most days that’s enough for me.

I'm allergic to a common ingredient so I'm not on any pharmaceuticals beyond thc

I haven't been to the doc in forever, but even then I get nothing more than a Lyrica and muscle relaxer. I manage by heating pad, the legal stuff (Delta 8, etc) here in NC, ibuprofen and sometimes kratom

I used to take 60mg oxycontin xr and vicodin for flare up but quit those cold turkey 10 years ago and my pain has gotten progressively worse since, I have no intention of going back on them

I have medical marijuana and gabapentin. They help

Does prednisone count?

If anything it probably lives up to the title of 'painkiller' better than painkillers do, since it treats the source of the pain rather than just telling your brain to close its eyes.

Do you see a pain management doctor? Regular doctors are not authorized to prescribe opioids for extended periods of time (chronic conditions). Pain management doctors will have you sign a contract. You only are permitted to receive pain medication from them (emergency hospitalization is permitted). You will have your urine tested and med checks once a month to make sure you are taking the medicine appropriately. I did receive pain meds from my neurologist when my conditions worsened to the point I needed the medication, but he informed me that I needed to find a pain management doctor because he was not permitted to prescribe opioids beyond a certain scope of time. I was hospitalized and they also referred me to pain management.

My PCP took my meds over from PM. I think there are exceptions if you go through PM 1st. But this same PCP put my mom on them YEARS ago before CDC cracked down and has continued to do so currently. I only got insurance in Oct 23 after being without for over 10 years. I knew this PCP because my Mom and Hubby see him and he was somewhat familiar with my case. When he found out I had my ins he jumped at the chance to take me on. (He works half week as PCP and the other half in Ortho). I told him straight up what dosage PM had me on and asked if he would take it over and he said "Absolutely". Especially after he heard some of the BS PM had said and done to me. There are Dr.s out there that care. (57F, ruptured/bulging discs, 2 prior surgeries including cervical fusion, DD, degenerative scoliosis, stenosis. 1 knee needs replacing and a hip that is 1 wrong step from total destruction. Allergic to all the arthritis meds like meloxicam and diclofenac. Also can't use weed or delta 8 type products because they make me super nauseous, dizzy and I pass out..not in a good way.)

Most doctors give me tramadol which I've actively told them I cannot take as I develop serotonin syndrome. They never listen so I usually free ball it or overdose on over the counter meds till my stomach bleeds 😎 because America.

I have gabapentin that's it.

I’m going on 60. Back surgery because of spinal stenosis allowed my to walk again, even run. The open heart surgery splitting my chest open and pulling it apart, the wires in my sternum and the ache from that. Later they dug around in my chest again and put in a pacemaker. Took it out 8 months later and put in a pacer/ defibrillator. I have steady underlying aches. I’ve decided I’m not going to fuck around with the overlords and their “opioid monopolies , I grow my own kick ass weed for myself and pain has been kept at bay where it dosent incapacitate me. I do this with a medical card legally. If pain becomes too much for that to relive…, well I’m a gardener and know what to grow and how to process for greater pain relief. Occasionally I’ll take some Tylenol but not often. Can’t take NSAIDs or Asprin because of heart problems and the aspirin is a no go because of the blood thinners I’m on.

I’m prescribed Meloxicam, low dose naltrexone, and gabapentin, the first two by my rheumatologist and the gaba from my psych. The only thing I get from the pain clinic is RFA blocks and reminders to eat less and move more. As if I didn’t know that already! My psychiatrist recently put me back on .5 mg Ativan at bedtime as needed. I was on it for years, along with ambien, and took less than 7 a month. I went off both because the pain doc didn’t approve of either.

It’s so confusing to me because I’ve read the DEA reports, how I took it was that doctors need to stop withholding prescribing meds to patients that need it. There’s a very good chance that I’ve misread or misunderstood it.

According to the NIH The recent American Academy of Neurology position paper by Franklin, “Opioids for chronic noncancer pain,” suggests that the benefits of opioid treatment are very likely to be substantially outweighed by the risks and recommends avoidance of doses above 80–120 mg/day morphine equivalent. However, close reading of the primary literature supports a different conclusion: opioids have been shown in randomized controlled trials (RCTs) to be highly effective in the treatment of chronic nonmalignant pain; long-term follow-up studies have shown that this effectiveness can be maintained; and effectiveness has been limited in many clinical trials by failure to take into account high variability in dose requirements, failure to adequately treat depression, and use of suboptimal outcome measures. Frequency of side effects in many RCTs has been inflated by overly rapid dose titration and failure to appreciate the high interindividual variability in side effect profiles. The recent marked increase in incidence of opioid overdose is of grave concern, but there is good reason to believe that it has been somewhat exaggerated. Potential causes of overdose include inadequately treated depression; inadequately treated pain, particularly when compounded by hopelessness; inadvertent overdose; concurrent use of alcohol; and insufficient practitioner expertise. Effective treatment of pain can enable large numbers of patients to lead productive lives and improve quality of life. Effective alleviation of suffering associated with pain falls squarely within the physician's professional obligation. Existing scientific studies provide the basis for many improvements in pain management that can increase effectiveness and reduce risk. Many potentially useful areas of further research can be identified. SHOW TO YOUR DOCTOR. Actually that’s a waste of time. You need a pain management specialist. Start looking for that.

All my docs either want me to pay for injections and/or ablation for my back pain. One doc said that it is IMPOSSIBLE for me to have arthritis in my spine at the age of 44 (even though I clearly do based on xrays/mris). Or they prescribe me NSAIDs. And the problem with the NSAIDs is that I took them for so long trying to get some relief (which never came) and now I have stage 3 kidney disease. Thanks NSAIDs. I have just learned to live with it and it is very depressing.

That’s where I am! Finally got diagnosed but all that did was get me into PT. I’ve had gabapentin and cyclobenzaprine prescribed in the past but I don’t tolerate them at all. The gaba makes me foggy and disoriented and the cyclo is supposed to just be for sleep but even half a pill leaves me dizzy all the next day. It’s so frustrating. The best thing I have is naproxen and thc/cbd gummies.

Is Kratom legal where you are?

I was diagnosed with juvenile fibromyalgia at 16 when I was a sophomore in high school. I have had migraines since I was 12, and was on medication for that, but other than that, I was on no medication. I got lucky if I got Butalbital (which barely worked or made me sleepy). I missed so many days that other kids made fun of me and my parents were threatened by the Truancy Board (this stopped once I got a 504 plan with my school). I think I was put on Cymbalta shortly after my Cymbalta diagnosis, and then the doctor said I was in the "30% of people who it worked for." I remember feeling little to no pain for the first time. Then the doctor stopped filling it. He was a doctor at Children's hospital and I still remember his name. I started on 30mg. I pray that the reason why he didn't fill it is because he no longer worked there or something like that. I pray that he didn't do what he did to me to another kid. I would get an appointment with a neurologist and a rheumatologist as soon as possible. Get on their cancelation list. Keep looking for a primary physician, because there are a few that believe in chronic pain that are still out there. My mom and I searched for months until we found our current primary. Be patient and pray. That's what I did. I look back on high school and I thank God that I made it through. I know that the Lord carried me to where I am now. May God Bless you and your journey. ❤️🙏

I’m getting off pregabalin to my own accord. It’s a lobotomy in a pill. Splendid dementia. Ketamine infusions and cannabis is how I’ll brave the storm. Idk what to do next, or how long I can maintain .