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I am 47 years young and have been disabled for over 20+ years. I have chronic pain, I am also bipolar/high anxiety/depression. I live in NJ, where it has changed drastically since CDC guidelines were changed. I have been on opioids for most of those 20+ years. I also was able to take anxiety and sleep medicine prescribed by a psychiatrist. I have had multiple surgeries, done physical therapy, nerves burned and all kinds of injections.
About 2018 is when my whole world changed. I was taken off MS Contin for Belbuca. Taken off my Ambien and Clonezapam, because I had to choose pain over sanity. Now the meds that I still take are being tapered down because my doc said his hands are tied from the CDC, and that I may need to go somewhere else. I wish this was a dream where I would wake up. I’m trying to advocate for myself, but with no luck.
I was recently told that palliative care might be an option for me. I’m not sure or know where to turn, but if anyone lives in NJ that can help, I would sure love to hear from you! Thank you Claudia for all that you and your team are doing š
How in the last 15 years has “congress” taken away a MD’s right to write a script for whatever he/she decides their patient needs! It’s NOT big pharma doing this, it’s the screwballs we send to Washington, and mind you, both parties are GUILTY of this. DOCTORS! YOU TOOK AN OATH! STAND UP TO THE BASTURDS!!
I’m a middle aged man with a lot of hardware inside from surgeries. When I had medication I could do some work and enjoy life a little. The doctor took it away saying I’ll get hooked – but what about being in pain, that’s okay? Now I’m in so much pain all the time I can’t do anything, and I can’t take much more. I heard other pain patients are talking about joining a class-action lawsuit against the people causing us to suffer, to stop them from denying us pain medication. They said senators, CDC, state medical boards, DEA, and maybe even the FDA would be named to be sued. I’m ready to join. Just tell me where to sign on!
I have been in chronic back pain with arthritis, bone spurs, lumbar fusion, and fibromyalgia for ten years. My
medicine – which I NEVER abused, is the ONLY thing that kept me going. Well, when the pandemic happened I had moved five hours from my pain clinic, and because I couldnāt get to the clinic for a pill count (that I NEVER missed) cause I was five hours away and quarantined, they dismissed me. I was in AGONY. Not from withdrawals but from pain. So, because the system failed me and I had always done things by the book, I bought some (of exactly what I was prescribed before) from a kid and we got caught. Now Iām on five years probation and Iām having a horrible time finding a doctor or a pain clinic to help me with my pain.
I trusted the system and it failed me. Many others go through this. They lose their meds and turn to buying them. Taking our meds away because other people abuse them isnāt helping us! Itās making our lives less productive and we have to find them some other way!!! Give the chronic pain patients their meds!!! Any info on where to find a decent pain doctor in the KY IN TN WV OH area would be a gift from GOD for me!
In 2018 I was in a car wreck that changed my life and my mental health. I wrecked my car and shattered my pelvis, broke my femur bone in two spots. I also fractured my skull with results of seizures, headaches, and I’m pretty sure I’ve had a stroke. I couldn’t walk for six months and I can’t say I would have rather been been dead than go through this. Doctors aren’t doing anything for anyone, and they still make millions of dollars. I just want relief; I know the pain will never go away.
I have been suffering day and night for 17 months now with debilitating severe chronic neuropathic pain… Prescribed nothing but Gabapentin from a so called “pain doctor” which did nothing for my pain, but caused large red blotches on my arms and made me dizzy… I no longer have any quality of life… NO doctor would allow one of his own family members to suffer in this way… This has nothing to do with addiction or an opioid crisis as thousands are dying from finding other means to illegally acquire drugs to help them while others are committing suicide because they can no longer deal with this inhumane treatment forced upon them and their doctors made fearful of sanctions… And no one gives a damn about these deaths due to corrupt government who claim their intent is to save lives! ABSOLUTE bullshigity!!
Im a 61 year old Certified Master Mechanic, I fell from a crane and they continue to IGNORE MY PAIN, I’ve been through 8 surgeries, I’ve been to Texas Back Institute, I’ve been through more nightmares then people have regular dreams, I’ve been through more doctors, I’ve had the police called on me, I’ve been through so much of a nightmare after the fall. I wish I would have died in the fall because ufn people are unreal and I mean unrealistic. You expect a human to bounce like a rubber ball, get right back up, dust yourself off and you’re just fine. You don’t need any help from planet Earth or anything. Get with the program. People are human, we need extra help, like medicines that have been around for hundreds of years. Wake the devil up people, get the DEA out of healthcare, they don’t belong there.
I’m so sick and tired of going in circles with doctors I hate their guts. All doctors are cowards. I cannot stand their gut I had a real doctor for years, Dr. Byron Schofield, he passed away in 2018. I’ve had more Suboxone ball junk thrown at me, which is not even meant for pain, and all I do is keep going in circles and circles and circles. I’m so sick of it, I could take my life a thousand times by now, but you idiots would not wake up from it. You really need to get hurt yourself and find out what the devil you prescribe yourself, and then maybe this nightmare will change. Get REAL.
Iām 60 years old and been on pain meds for 15 years, taking 6 a day. Then Covid caused my doctor to quit and started seeing a nurse practitioner who said I need to get off of them! She never looked at my MRI because she said I didnāt have one on file, which I did. I was fortunate enough to find another doctor who only gives 4 a day which is generous, but they only want to try injections (which doesnāt work for diabetics), symboxa and now methadone! versus just increasing my original back to 6 a day, which at least got me out of bed.
This is tearing me and my family apart! I dread going to bed because I hurt all night, or waking up to face the same pain again.
I was in a car versus semi accident in my early 20’s. The pain never did go away, and over the years got progressively worse. In 2015, I got into healthcare because I wanted to help people. I became a CNA to make sure I wanted to actually be in this field. Working in a severely understaffed SNF, my pain got so bad that I had to quit my job. Later that year, I had the first of two surgeries on my neck. Metal plates, fusions and clearing the cervical nerve channels did not help much. The second surgery helped even less. I had been on Oxycodone from 2014 until late 2020 when the pain clinic doctor suddenly stopped my prescription. I was put on Buprenorphine instead. It doesn’t even come close to helping with pain, and the increase in dosage has left me not wanting to take it at all due to side effects. I never abused opioids and hate taking any medication in general, but that made no difference to the doctor. Now, like many with chronic pain and no relief in sight for help with it… I find that each day, it becomes harder and harder to find the will to continue living. I have absolutely no quality of life. The only reason I am still around is my significant other. I don’t want to cause her the emotional damage that suicide can cause. But each day it is a struggle to want to live with the hell of endless pain and no normal life. I absolutely hate the AG in my state for his part in causing the suffering of innocent people.
My rheumatologist referred me to pain management after 20-plus years. He’s a good doctor but felt pressured by the DEA. My first appointment to the pain doctor was a nightmare. He told me he could not treat my pain because that would mean “handfuls” of pills. He instead said he wanted to install a pain pump. I have severe RA, fibromyalgia, Lyme’s disease, and neuropathy. I’ve had several joint replacements over the years as well. He did a drug screen that he said I failed which is impossible. He wrote me a week’s worth of lower dosage medication. I let him do injections in my knee otherwise I would have gotten NOTHING! I left there in tears. He cancelled my next appointment and I haven’t been back!
I am currently undertreated for my Ehlers-Danlos pain because my doctor’s office has referred out all chronic pain patients and can only give me a couple of alternative medications. I’ve considered taking my doctor up on her offer to refer me to a pain clinic, except for what my mother has been through.
My mother (who also has hEDS) was fired from one pain medication provider’s office over Christmas for missing an appointment while my brother was dying from cancer. They claimed they had sent multiple letters, they hadn’t. We didn’t get the first letter or any inkling there was a problem from them until we received the first and only letter they ever sent, a week after the deadline they set in the letter to rectify the issue and avoid the firing. They also refused to give her enough pain medication to cover her until she could find another provider. They literally left a newly bereft mother in fear of the onslaught of physical pain she would experience. She was able to find another in her area, that worked well, up until they failed to inform her at either of her last appointments that she was supposed to have gotten more tests. Keep in mind, my mother is not addicted and is happy to demonstrate it through testing, she just needs to know when they need her to get the tests. They blamed her for their lack of communication and fired her again, oddly enough, with a referral to another clinic, so I guess that’s good.
My mother has served her community for decades in her job and through her volunteering. She uses her pain medication responsibly, but is being treated as if she is an addict for being human and not being able to read her doctor’s office’s minds to know when its time for those tests, and for missing an appointment while her son was in the process of dying. If doctors can’t be precise with their communications about tests, and processing communications vital to the doctor-patient relationship, how can they expect their patients to be more on top of things than they are? And how am I supposed to trust them if they can’t see and treat my mother as the human being who made an appointment mistake while grieving, that she is?
Fused spine, 4 shoulder surgeries, 4 biceps tendon reattachments, wrist dislocation surgeries. Starting 2005, 100 mg was increased over time to 320 mg, then mercilessly down to 50 mg. Stress and withdrawals were insane, heartless doctors, was forced to take spine injections to get meds, marriage ruined, struggle to work enough to live. Life destroyed.
Hello, My name is Elisha, and I am from California and I will be 40 next month. I was born with a rare genetic syndrome that affects every bone, joint, and muscle in my body. I look fairly healthy but I am one out of 16 people in the world with my syndrome. I also have osteoporosis and neuropathy. Doctors are unsure of what causes my chronic pain but it started in my late 20’s. As a child I underwent many surgeries and by the time I was 15 I had already had 52 surgeries.
I started getting Norco like candy by my primary around 2010 up in central California. By 7 years later I was in pain management in LA because I needed long-acting meds and breakthrough pain meds for the bad days. I was given MS Cotton 3 a day and Percocet 6 a day then dropped to 4 a day. These medications did NOT make me high, they made it to where I can function daily and get out of bed. I was a full time student, part time work and wife. I lived life to the best of my ability.
As years went on the pain got worse. Fast forward to 2018 I am now living in a Palm Desert, the Riverside county. I was seeing a great pain management doctor. I saw him twice and he was great! My third appointment I was being seen by his PA who knew nothing about me and didn’t seem to care to. All she had told me was that my UA was dirty for fentanyl.
I knew it was because I had just tried in from a “friend” because she said it was Percocet and would help my pain. The first try I was hooked. I was so ashamed because I had always followed the contract and never did street drugs in my life!
The PA said I had tested dirty 3 times. She didn’t care to explain to me the dangers or that, the fact that I could get kicked out of the program, or ask my why I did it! I had did it because my pain was not being managed and I was too scared that if I told her she would look down on me and take away my meds. Sure enough that appointment was less than 10 minutes long. I asked her about changing my meds and she said, “Next time you come in we will talk about it”. A few weeks later I received a letter stating I was let go from testing positive 3 times and that I will get one more last refill of my medication. I did not!
I was upset with myself, but I also was upset in how they treated me and now I have in my chart DRUG ABUSER, DRUG SEEKER! I had emergency surgery and they didn’t want to give me pain meds. I now see an addiction specialist. I went to detox from all opiate and Xanax detox for 8 days because he so desperately wanted me on Suboxone! I have anxiety and panic attacks so I get 0.5mg and he wanted me off of everything! He now has me on Suboxone with Sublocade. I cry most days because I am in so much pain!
Should I remind him that I am 1 out of 16 adults in the world with my syndrome! Let along my bone density is the equivalent of an elderly. I wake up with pain at a 10 or higher and it hardly comes down. I am now keeping a daily journal of my pain and what I take to help the pain.
When I tell people I am going to get back on my meds they laugh at me and tell me that will never happen. As for the fetty yes I am in outpatient recovery for that and do want to work on that. There for an addiction there and I want to know why. It nearly killed me and I now have no function of my right lung because I was using that to cope with my pain. I didn’t abuse my pain meds. I’m I stuck, screwed and never going to get any relief?
My primary is willing to give me Percocet as PRN and that is all I want! I’m fine with sublocade as long as it’s not bad for me. I want off of Suboxone! I am not a recovering drug addict. I was under-educated and the doctors still need to get my meds right!
Can you help me? What should I do? I am sharing my story on Tik Tok. I don’t have much support. My own mother says I ruined it for myself. I refuse to believe that!
Thank you!
Elisha Gutierrez
I have classical type EDS and was removed from pain treatment in 2017 due to pain treatment guidelines. My physician quit and returned to working with inpatient hospital patients due to the guidelines limiting his ability to help patients. I have been unable to work and am homebound since then.
In 1973 I had a Harrington Rod put in my back from T4 to L2 because of scoliosis. Did great for many years until I developed Degenerative Disc Disease and Spinal Stenosis in my lumbar spine. In 2006 I had lumbar fusion from L2 to S1. This surgery consisted of 2 titanium rods and 8 screws. I also, had the L4-5 and L5-S1 discs replaced with cages. In these cages was placed a material that was to “grow” artificial bone. Some time after my surgery (and still in extreme pain) I saw an ad on TV about this artificial bone material and called the number mentioned. I found out that this material got flagged by the FDA as causing Chronic Pain and in some cases paralysis.
Over these past 15 years of taking opioid medication for pain, I have been finding it harder and harder to get my medication. I have been looked down on by people who can’t see a disability. I feel I have been classified as being part of the Opioid Crisis.
I live in Kentucky and my children/grandchildren live in Alabama. I also have family in upstate New York. A few years ago I was able to get my pain medication filled in either state. I would let my doctor know ahead of time and it only would occur maybe one or two times a year. In April 2021 I informed my doctor that I may have to get my medication in AL because my grandson was graduating high school in May. He was graduating 6th in the top of his class so it was a really big deal. The doctor informed me that I would NOT be allowed to fill my prescription any place except for the pharmacy I currently use. I said that I use Walgreens and that I could use a Walgreens pharmacy there in AL. I was then informed that that would not be an option, and to better manage my time or perhaps skip some of my pills to make them last longer.
I didn’t ask for this chronic pain or the pills that make life bearable. I truly wish people and the government knew the difference between individuals who ABUSE opioids and the individuals who are dependent on them. If I could work in a garden or walk in the park without pain, it would be a much better life for me. Pain is going to be with me the rest of my life … so why do I feel punished?
Thank you for listening
I had a direct inguinal laparoscopic hernia repair and had a lot of nerve damage and even tried holistic medicine but no relief and saw specialist after specialist with no results. Then in March 2021, I had nerve blocks in the front and back for six months and then had a spinal cord stimulator trial for my groin pain. The test failed; I am now experiencing pain along the legs, arms, back, shoulders, neck and having difficulty lifting or opening objects/primary care needs. There is a large amount of excessive pain in my shoulders and behind the head, accompanied by night sweats. The pain is unbearable; no physician has been able to prescribe successful medication that I need to get back to whatever the new normal is for me. I worked on the front lines vaccinating patients during the worst of the pandemic and left due to excessive procedures and inadequate pain management that I was regularly seeing. I want to use my graduate degree and leave this behind me. I’m looking for anyone willing to help me or give me advice.
Thank you
I’ve been on pain meds since the early 90s… I’m 66 years old and have multiple active back problems being treated by my pain clinic. Three months ago my doctor cut my meds in half, and I have never experienced the pain this intense before. My daily ritual has been totally shut down. I have no quality of life anymore… I have never abused my meds or failed any of the clinic’s urine tests. Each time I go back I get trigger point injections, which aren’t helping anymore. The pain is so intense I sit all day on a heating pad that covers from my neck to bottom of my spine. It hinders my sleep at night. I HAVE NO QUALITY OF LIFE… and the clinics says their hands are tied. God help us. WVa is where my clinic is.
What do we do as people who really need the medications we were initially on that helped us live a tolerable life again… why is the CDC not listening… give us our lives back!!!
Hello my name is Heather. Long story short I have an L4 L5 extrusion. I have arthritis throughout my entire spine and my spine bends over from the overcompensation for my breast. I have had numerous back injections as well as a breast reduction. I live in chronic pain which has affected my entire life, mental and physically. I canāt sleep, itās hard to function. I have been to numerous doctors throughout the years. I havenāt been treated correctly for my pain since it started almost 12 years ago. Iām only 37. There are days I canāt walk. My feet are affected. My neck. I canāt bend over and I take care of 4 kids – small children. I push through it but boy am I in pain. I was just let go from a doctor and heās refusing to treat my pain until I find a suitable doctor. Heās refusing all my meds for that matter – for my heart etc. This is has been to say the least heartbreaking. Iām devastated.
I live in Utah, and they use the 2016 CDC guidelines as gospel. I have scoliosis, ruptured discs at L5-S1, and bulging discs at L3-4, and C4-5-6, plus multiple compressed discs in my C-spine that have caused the natural curve to be straight, which puts a lot of strain on my muscles there. I got a SCS in February 2021, which hasn’t helped very much, and doesn’t touch the pain from the scoliosis or my neck pain. I have chronic intractable migraines as well. My meds have been cut down to a level that barely allows me to function. I have quit working, I can’t take care of my house anymore, and I have trouble with my hygiene due to the mid-back pain from the scoliosis because when it flares up, I am in pain for days. I am only 51, and I feel like my life is over. I have many days when I wonder what am I still here for, if it’s just to suffer in agony every day for the rest of it?
It’s so unfair for all of us to be at the mercy and whim of doctors who don’t give a damn anymore. They’ve lost their humanity, and only see us through the lens of drug abusers and criminals. None of us asked for this, none of us want to live in agony every day, and we shouldn’t have to. What they’re doing to us is cruel and inhumane. I hope that somehow, something swings back our way and gives us the fair treatment that we deserve.
I have suffered for years from failed anterior/posterior fusion. Doc ground out my spine from tailbone to L1. He stapled the nerves to remaining bone, put a cadaver bone in, though he used nothing to stabilize what was done. He then flipped me over, refused to wait for opening surgeon, he then proceeded to cut the femoral nerve, the main artery to my heart I bleed out. My esophagus, larynx, trachea were damaged after being intubated. I received several transfusions that was not my blood. Found out later District Memorial Blood Bank gave out HIV-infected donated blood.
My artery was repaired concave so I don’t have proper blood flow to my heart. My throat has scar tissue from damage. It is painful to swallow, I choke, I had to learn how to eat, drink, speak, all over. Then after car accident my neck was broken from base of my skull to C7. Again from back surgeries the scar tissue is bad but both surgeries have left me with stenosis, osteoarthritis osteoporosis, I am severely anemic, causing Brittle Bone disease, RA, sciatic groin burning into thigh, new fractures in cervical where I turn my head, have sharp pain, and you can actually see joint movement. I’ve had to have several spine surgeries to fix failed fusion. The graft fractured in eight places, also leaving me to get new fractures.
The cutbacks have caused severe to unbearable pain to come back leading to my recent injury. I fell, I was knocked out, concussion. I had a CT scan showing a tear in lining of my brain, two hematomas, frontal lobe injury. My head burns. The pain in itself makes me nauseous but the burning hotness and tremors I get soaked blurred vision.
Because of the most incredible doctor, I had quality of life, I gave back to the community, I loved my life. I drove school bus 7 1/2 years. My employer was fully aware as were my kids’ parents. They requested me every year, I was able to get my commercial license with tanker and hazmat endorsements. Not only did I take care of my own truck, I loaded my trailer and equipment. I drove dumptruck all over the city to pick up loads, to dump loads, I helped pave roads, airport parking lots. I had a life.
Then my doctor gave me a choice – to have life or live as a cripple. I was drug tested at every job, even where I was hired to drive city bus.
Not everyone is an addict as they portray us. We go on to be productive, have living families. But what has been done to me with these severe cutbacks has not only sent me to the ER with chest pains, heart issues, it caused my recent head injury. I’ve lost 47 pounds, I’ve aged 20 years, I don’t spend time with my kids, grandkids.
These cutbacks have cost me more than anyone can possibly imagine. I can’t work. I’m sorry – if you think for one minute disability is a life, think again.
I know struggle with bills, groceries, I’ve had my landline shut off, with lifeline, my electric shut off. I have no reason to carry my head high. I’m a disgrace. I didn’t ask for this. It was a doctor that brought this on.
Now I’m being punished because I want quality of my life, dignity to be proud of being here. After what was inflicted on me by a doctor. Read my records, quit judging me as an addict, I’m not. I’ve never abused or misused. I have followed all the rules. Except my wonderful incredible doctor of 12 years lost her license because she believed people have the right to live life to the best quality possible. She was ruined.
My pain management doctor has left because the DEA came and took all patient files, telling him to cut back everything, no matter the consequences to these amazing doctors willing to help, you’re forcing their hands to stop helping patients. He left because he sees first-hand people being crippled by these cutbacks.
No longer able to exercise, keep my body strong, I can’t even stand or walk without falling from return of all the horrible pain that was once under control.
I am not a pain patient, but my husband has had three back surgeries. He is currently recovering from a spinal fusion surgery. He had one last year, it failed, and it has been redone with new hardware. When he was discharged from the hospital, we were told to make sure to stay ahead of his pain. Call in plenty of time for refills and stay on schedule. The current laws prohibit him from getting more than [so many doses] at a time. That is only an eight-day supply. I have to call the doctor every week for refills. While the doctor is more than willing to submit the refills, it often takes time and we run into issues.
One time the pharmacy was out. They could not transfer the prescription to another pharmacy. He waited all day in pain for the doctor to call it in to another pharmacy. Another time, he ran out. I was puzzled. I had been meticulous about his medicine schedule and had even written down each dose as he took it. When I went to get it filled, I was told he had to wait another day.
He was in pain all day and that night until he could get it filled that next morning. He came up short again the next week. Too early to fill. I started counting the pills when I brought them home. He was being shorted and there was nothing I could do about it. After all, who would believe me?
You are a stand-up, hardworking citizen until something happens and you need pain medicine. Suddenly, you can tell certain health care providers look at you differently. Even some workers at the pharmacy when you come in to get pain meds a day early according to their information give you that look. If we had been shorted on antibiotics or blood pressure medicine I could have spoken up, but I knew I wouldnāt get anywhere with this. We strategized about when it might be best to skip some doses.
A surgery patient should not have to figure out when it might be best to do without pain medication. Has anyone else had issues with this? I am amazed that policy makers have not considered patient care. It seems they want it to look like they are doing something about the opioid crisis. It seems to me it hasnāt deterred drug abuse at all. Those that are abusing are still getting their drugs. It is the rest of us, law-abiding, hardworking, citizens that suffer. Where is the compassion for pain patients? It is appalling.
I do not want the government to control doctors that feel their patients need opioids to be able to live their life without being bedridden. I have bad discs in my back and I have to take a couple opioids a day to be able to get up and move around. I would not be able to if I wasnāt able to take the pills. Do I wish I didnāt have to take them? Absolutely, but I am not addicted because they donāt give me a high. What they do for me is lower my pain level from a 9 to about a 4-5 on a scale from 1-10. So please donāt take these away from the people that need them.
I have a disease called Arnold Chiari. I have a herniation of 17. I had decompression surgery in 2000 but with the herniation being so severe I continued having many symptoms after the surgery. I live with vertigo which comes with nausea and vomiting, blurry vision at times, terrible headaches from the herniation that Noyola a Demerol shot with sofrĆan helps me. I have trouble walking and with coordination of legs and hands.
In 2008 I had an intense spinal cord surgery that lasted 12 hours. My spine gets very dry because my cerebral fluid doesnāt flow well. Any straining that I do brings on the headaches and vertigo. Just straining to go to the bathroom sets me into a 3 or 4 day flare up. I canāt even tell you the consequences that I pay if I cry too hard. Iāve been this way since I was 44. I am 67 this year.
The first 9 years they controlled my pain with high doses of Gabapentin and Eladio and Diamox. After 9 years my body starting rejecting them and I had severe consequences and they switched me immediately to Percocet. After a while I was on low doses of Oxycodone fast relief and a baseline of OxyContin which is time released. I was able to let go of my wheel chair and my quality of life improved tremendously. For 14 years I was doing great and last year my husband retired and we moved from our state to another state.
It has been a total nightmare here. Not only because they donāt know me but because their state laws are different here. Iām off the time release and am taking low doses of fast relief Oxycodone still being prescribed from my doctor in another state. I have palpitations all the time and have high blood pressure now because I have to suck up so much pain. They have told me they’re sorry but there is nothing they can do for me. Itās a terrible situation.
Some days I just want to die because of the amount of pain I have live with. I have never been suicidal nor would I ever do that but I do ask God to take me. I am not an addict and in all the years Iāve used opioids have never had an overdose or have I ever felt high. Itās just not fair. I canāt walk more than 10 minutes and I canāt play with my grand kids anymore. I can do nothing nor do I have purpose any more. Iām sorry that there are people that abuse these meds but thatās not me and I am being punished. Will this ever change. I donāt know.
My pain started after the three tours I did during the Iraqi War. I was medically discharged from the service in 2006 and formally retired in 2010. I have full VA benefits and have been seeing the VA for 14 years now. My doctor tried exercise and physical therapy (note: don’t believe for one minute that organizations and insurance don’t limit your number of visits). Mine did, and while it was beneficial to an extent, the idea of limiting it to x-number of visits can be detrimental. Tried many types of drugs (Cymbalta/Percodan/Ibuprofen) but I either became tolerant to them, or the dosages needed to achieve the ideal effect became toxic. And for 5 years my care team and I coordinated to find the ideal combination of medication. I could not use steroids or nerve blocks due to high blood pressure and a heart attack in 2014 (stress induced but also arteriosclerosis).
We finally found a combination of Gabapentin and Morphine that worked well and seemed very tolerable and it IS low dose – I must stress that. And for the last 8 years I have had a relatively comfortable quality of life. That was until the drug epidemic and governmental crackdowns on the use of Oxycodone/Hydrocodone/Morphine.
I was quietly told I would have to submit to both blood and urinalysis to continue being prescribed this. I had no choice, and my care team suddenly made me feel like I was a drug addict!!! Calling my medication an “addiction”. I was angry and appalled, but I said nothing so to at least continue receiving my medication. I cannot begin to tell you how the VA constantly misplaced my script. I was on the phone to them reminding them that delays in my Morphine can lead to withdrawal which makes you feel ashamed, embarrassed, and just plain worthless (and in enormous pain). And despite my numerous calls and nearly resorting to begging my team to be consistent with my treatment, the VA was on the bandwagon (despite numerous pleas from the FDA and AMA to stop being so overreaching and respect the patient). “We have to combat addiction!” Umm I take my medicine meticulously, I submit to dehumanizing tests to satisfy their “studies”, and am continually called an addict. What is my crime again? What did I do wrong? I did what you asked, and what you pretty much ordered me to do?
Well in 2021 my primary physician at my clinic retired. In doing so, he left a horrific mess and a literal gang of doctors who were quick to deride and criticize his “pain management” methodology. This man had DECADES of experience while the physician’s assistants that had replaced him weren’t even born when he became a doctor! So it seemed that the VA put “yes-men/yes-women” who would follow their mandate and immediately decry, “I won’t prescribe narcotics”! Even though many of the former doctor’s patients were well managed, and had been on them for MANY years. But now here we are, not in the middle of a drug epidemic, but a far FAR greater epidemic – and that is of paranoia, fear, and overreaching rules.
So in frustration for the VA’s sudden draconian rules, I used my private insurance to get a referral to a local pain management clinic. I got processed, the kind nurse took my information and questionnaire in, and asked me to wait. Right off the bat, the doctor that was practicing at the clinic immediately chortled, “I don’t prescribe opiates”! Okay? But I at least wanted to know if there were alternatives? Perhaps new medication? Or perhaps new therapies? But instead, I got the standard/substandard “lecture” on why the VA set me up for failure. And he would not let me speak once. He told me I would be a quadriplegic by age 65 (I’m 54) and that I’m not interested in therapy. He offered the steroid blocks and I said I couldn’t do them, but immediately started (again dominating the conversation) telling my about my bad life choices, that it’s all about what “I” want and that I’m just seeking Morphine. And he has had this conversation with a lot of others, and how I refused treatment (he didn’t again let me explain), and that he could do nothing for me. That my Morphine and medication treatment was meaningless and my my memory is going. I know I know! This is hard to believe, but it is FAR more common for us recipients of narcotics to hear this demeaning, degrading, and disgusting diatribe about how WE are the bad ones, that I am wasting (insert doctor’s name here) time and that the script just keeps getting more and more humiliating by the year.
For the record, I’ve been in war, I served my country in every war and campaign since 1994. I ask for nothing! And am grateful to my fellow Americans for their support of me in my time of need. I’ve been shot, stabbed, impaled, and I’ve broken close to as many bones as Evel Knievel. Yet this doctor in my hour of need and vulnerability made me feel like an addict, like I was worthless and not worth treating, and that I was a waste of his time, a waste to my society, and a drug seeker. I left. Even the nurse shook her head and told me, “I’m sorry”. She knew this doctor had done this before, but could not say anything to a doctor, lest she lose her job. I made it to my SUV, got in and broke down crying!!!
Is this what we have become? Where due to the drug crisis we now are “scripted” to marginalize people who are on narcotics for their very quality of life? Are we the same addicts that are so over-reported on the news that the mania now is, “Oh you must be an addict”. I know this is full of emotion and I know it’s long, but I think it’s time as a nation we now have this conversation. How many lives are being torn apart by a paranoid, over-reaching, and senseless government who is marginalizing the very citizens who not only support it, but have defended it, made their lives in it, and only ask to simply be treated as a normal, decent human being that had a misfortune they did NOT ask for!!! This madness and insanity has to stop!!! Even the FDA, AMA, CDC, and many articles have regretted their overreaching actions and words and are trying to help control the damage that this epidemic has caused.
In summary I have only this to say. We are NOT addicts, we ARE decent, honest people who are responsible, humanely, and diligently using our medications with responsibility to our neighbors, our fellow drivers, and ourselves. WE ARE NOT THE ENEMY!!! I say this with a heavy heart and tears in my eyes and I plead with any and all of you, to please help educate and remove the government and medically imposed stigma that profanes me and all my fellow pain sufferers. We do not ask for the removal of restrictions, we only ask that common sense, professional medical evaluations, and compassion be the guides to giving us a sense of dignity and purpose. Please, do what is right to combat drug misuse, but do not make it to where our people’s most vulnerable citizens consider illicit drugs, OTC medication abuse, and even suicide, due to their suffering.
My sister is currently in Cooper Hospital in Camden, NJ. She is terminal with stage 4 laryngeal cancer. She has a trach and cannot speak. They removed her lymph nodes, which caused lymphedema in her face. Her eyes are swollen shut, her face and lips are completely swollen. Her face hurts to lay on in any manner. The tumor is growing around her trach and cutting off her airway slowly, causing all kinds of pain in that area. She has been there since Sunday. Iām very happy with the pain care she received at home. However, I found out today when I visited that she has not had any scheduled meds. She had to REQUEST them when she needed them. She spent many nights there alone. She has to pull her eyes open to write a sentence when she could get a nurse in the room. I did ask the doctor today why they couldnāt be scheduled and he said that they ādonāt like to push opioidsā.
Iād like to know if they think she gave herself cancer to get them? Is she going to shoot up heroin tomorrow when she leaves for hospice? Her husband requested tonight to be given slow release meds or IV drip as he has several other times, and the doctor refused. They told us earlier today that they believe that she has started the process of passing, so what is the issue?
This is disgusting. I’ve seen more compassion for animals. Iām sorry to be so angry but this is unbelievable. Iām happy she is being transferred so she will actually receive humane care. I wish more people understood how out of control this is all getting.
I am a veteran who was seriously injured during service. This was before the opioid epidemic hit the public eye. I was on high doses of opioids, benzos, and sleeping meds (narcotic) until I received my medical discharge. The VA continued the same meds at home. After about two years of this medication regime and surgeries, I decided myself that I had better find a way to get off these meds. Introduce Suboxone!
I was told by doctors that Subs were the best way to get off opioids. I was on Suboxone for about three years until I relocated to a different state. At that time, the local VA didn’t have a licensed Suboxone provider. So I was sent to a local methadone clinic instead. I was put on Methadone, and again benzos and sleep meds. Eventually the VA got Suboxone providers and I was switched back to Subs. Now I’m on Subs, Gabapentin, and a variety of other meds. NONE have done anything for my pain issues. I’ve also had three teeth extractions and two root canals with crowns. I never even had a cavity in my life until now (57 years).
Suboxone and Methadone do NOT treat pain! They treat withdrawal from pain meds. Methadone costs about $16/day and Subs cost about $25/day! Neither are covered by insurance! And they are both more dangerous to get off of. I got off methadone cold turkey and that two weeks was pure hell! The VA had me start Subs to fight methadone withdrawal! All the while still dealing with pain. Opioids would have been much easier to deal with than those two dangerous meds! And my pain would be dealt with too.
Suboxone and Methadone doctors are not helping pain patients. It’s all about money for them. I’m stuck in a life of pain and now addiction to Subs. Go to a local Methadone clinic and check out the sheer number of sick patients who spend every day standing in line for a cup of watered-down Methadone! It’s sad and pathetic what these meds have done to people who are fighting addiction with a more powerfully-addictive medicine.
Years ago I was severely and permanently injured in a car accident caused by a drug addict under the influence.
Yesterday was the last day to add comments about the 2022 revised CDC opioid prescribing guidelines at the Federal regulations site. I gave my opinion and told my story about how I was treated by doctors ever since the CDC guidelines had been created. I said, every doctor in whose care I have been, started saying they must follow the guidelines so they won’t get arrested by DEA, go to jail, and lose everything they own to civil forfeiture.
I was always told by my doctors that my extremely painful incurable condition warranted continuing the opioid medication therapy, but it didn’t matter because the guidelines say 90 MME threshold. Some of the doctors would ignore my documented medical information, saying according to the guidelines the amount I need to control my pain exceeds the MME threshold, so that means I’m addicted, and I have to stop taking what I say works for me, and accept the government-approved addiction program. They wanted me to start taking a lot of Buprenorphine and receive shots in my back as well, or I won’t get anything at all, and to find someone else for medication.
Before the guidelines I had stable medical treatment with adequate dosing of opioid medication. I was able to have a good quality of life that included contributing to my family and community. Now, without adequate pain medication, I have become bed-ridden as I’m in too much pain, and trying move has become an impossible torture. The so-called experts who made up the guidelines, and the politicians that think they know better, obviously don’t know what they are doing. It was admitted there was a conflict of interest for the writers of the guidelines who were benefiting from [implementation of the guidelines] financially.
Though that didn’t change the application of the guidelines to pain patients.
Too many people have been suffering and dying from uncontrolled pain. People are dying by overdose more than ever from illicit fentanyl drug combinations – not [from] prescribed medications. The guidelines are not helping to stop this. The enforcement of the guidelines is causing great harm, and only helping people to die.
I read the entire 2022 guideline version. It’s not very different from the 2016 guideline version, except for repeating of sentences and the advocation of 50 MME threshold. The doctors will use 50 MME as the new threshold limit, as they did with the 90 MME threshold in the 2016 guidelines. The real-world facts show the guidelines are not needed.
Now, the senators who set up this situation need to do the right thing for the chronic and intractable pain patients. Make a bill like the state of Arizona’s SB 1162 that allows doctors to prescribe opioid medication as needed for the patients with intractable and chronic pain conditions that have medical documentation of their illnesses. Bill SB 1162 is reasonable. When followed it will save lives, and revive the lives of people who otherwise without pain medication won’t be able to physically function.
Pain patients are medically dependent on opioids for functionality, productivity, independence, and healthful well-being. Addicts are neither [medically] dependent nor interested in betterment for themselves, their families, or their communities – only to be in a state of constant oblivion or extreme adrenaline. There is a distinct and enormous difference between these two groups. They should have never been included together in any consideration of any kind.
Enough is enough. If through the courts or some other way, it’s time to correct this situation before it costs even more lives.
I got in a car accident and almost died. I still have a dislocated hip and drop foot. I also had a brain injury. They sent me to jail like this. Here’s a list of everything else that was wrong with me. Dislocated right hip, fracture of left acetabulum, fracture of right acetabulum, multiple fractures of ribs, fracture of body sternum, fracture of right pubis, fracture of left pubis. They took me off my pain medication saying I needed to gain weight. I’m in excruciating pain and can’t eat much.
I am a chronic pain patient who was treated and stable on pain medicine for 17 years, but that may be coming to an end. I have had pain conditions for much of my life and was initially diagnosed with a plethora of spinal conditions, fibromyalgia, and more. I saw five of the top pain management doctors in the nation (who I was referred to after numerous surgeons told me my conditions were inoperable and incurable, and I could only receive palliative care). All of them agreed on my treatment plan. We tried everything: painful injections and procedures, physical therapy, acupuncture, pain psychology, even an intensive outpatient chronic pain program that is the one of the best in the nation. My doctors have been thoughtful and conservative with my medication, but they all knew and agreed that I needed medication.
When my pain was under control, I had a life. I had friends, peers, and work. However, this has drastically changed since 2016 and the CDC Guidelines for Opioid Prescribing. I have been subject to repeated forced tapers, and I am at the point where nothing more can be cut. Nonetheless, I am at risk of losing an integral part of my healthcare because of the war on pain patients, and because my pain doctors have told me that the CDC Guidelines, which I am supposed to be exempt from, are a hard limit.
I worry because I do not know how much longer I can endure this – each month, I wonder if it will be the last one that I have medication that I need and that I have been stable on for so long. I thought that if enough things were “wrong” with my body, my doctors would understand. I was wrong. Then, I thought that if I did everything “right,” it would be okay – always complying and jumping through every possible hoop doctors, pharmacists, insurance companies, and others have asked me to. I was wrong about that, too. It doesn’t seem to matter if my body has terrible pain that can be treated and stabilized. It does not matter that since I began as a pain patient, I have been diagnosed with more intractable, painful conditions, including CRPS. It doesn’t matter if I am a “model patient,” because there seems to be no such thing. I am starting to lose hope, and I am maybe a month away from a taper I cannot handle.
Please stop punishing pain patients – please stop regulating the practice of medicine. My doctors are threatened, and so is my life. Thank you.
I am a disabled veteran. I suffer from necrotizing pancreatitis, spinal disease and much, much more. I have been totally disabled for 35 years. I was treated as a criminal and labeled a drug seeker by some of the biggest known hospitals and the VA. They totally misdiagnosed me. The VA refused my disability for decades. I suffered and lost everything at a young age. I have suffered in severe pain that most people would kill themselves over.
I was finally treated with a little more respect when they found a large cyst on my pancreas after a couple decades of being abused by doctors and hospitals. During a procedure with my pancreas they cut a tube, and the sepsis and necrotizing and much more made me a quadriplegic as I fought for my life for 6 months in a hospital bed being tube-fed. Even after that the VA continued to fight me over benefits. On active duty I had gotten very sick from chemicals working with aircraft. It was in my VA medical records on active duty. The VA continued to lie, lie, lie. They will deny, deny, deny until you die.
I had to pay a legal claims rep a fortune to help me get some benefits through the appeals that took a few decades; all the while I was suffering losing family, homes, jobs, unable to work, only seen as a drug seeker that they could not find the problems, only because they refused to look properly and blamed me for their failed tests. The war intensified on pain patients and we go through all kinds of phony treatments where they don’t do anything but talk. They just try to keep you away from pain-killing meds while calling you names. I had one doctor at a very well-known hospital here in the USA that said my pain was actually me having metal problems and said I was most likely sexually abused as a child, which was a total lie. I was yelled at by a GI doctor too and called a liar. I have been yelled at and subjected to abuse by so many doctors I lost count. I wish I could name them here, but the website owner would probably block me.
I am still being put through tests to make sure I do not stray from the limited pain meds I get, and have to be sent to these phony pain clinics. When these clowns get older, if they get sick they should be refused pain relief. I lost sympathy, after decades of being abused by the medical community and everything I went through and still go through. This phony war on drugs punishes the sick. I have traveled the world before I got real sick and can honestly say the USA is horrific in the way it treats pain patients. We have barbaric medical abuse on pain patients in the USA.
I’ve been diagnosed with Chronic Pain from cancer treatment. Put on opiate therapy that allowed me to have a quality of life. I have kids that I can’t be there for because I’m very limited. I feel like it’s my fault. I’ve been misdiagnosed with cancer and BrCa 1, bilateral blood clots, and was left with agonizing, searing pain. I have had my life stripped away by being forced against my will. I lived on a steady dose for years and was able to be active. I’ve developed more issues since the force taper. I’ve had my breast removed without extra pain meds for pain. The doctor refused to go more even though the surgeon thought I needed it. The pain meds I was already on was for my current pain condition not for the second surgery. I have suffered, my family has suffered and have been at the end of my rope. How do you get a doctor to listen and work with you. My doctor is cruel by making me wait until the day after pain meds are supposed to be done, and that’s when I get them. How is this legal. I’m treated like a criminal.
A family member was diagnosed with cancer at the end of 2020. During the entire treatment, they experienced very severe pain which the doctors at the hospital told them to take “Claritin” for, which is an allergy medication and not a pain medication. I heard my family member suffer from immense pain from the cancer, and not once during their cancer treatment were they prescribed any type of pain mediation. They passed away in 2021. They were suffering in very severe pain up until the last minute. No pain medication was ever prescribed to them, and it was very traumatic to me to watch my family member suffer so much. This is absolutely inhumane and cruel.
I also have very severe chronic pain as well, from a pain condition that’s known to cause some of the the worst pain known: CRPS/RSD. I have been continually dismissed by doctors and hospitals who say I need a psychologist for my chronic pain, as if it were in my head. I am housebound and bedridden now. I was more functional when I had opiate pain medication which I no longer am able to have. I’ve been sentenced to a life of severe pain, having become a prisoner in my own home, as I’m unable to leave it. I also live alone so I have to suffer alone. I miss being able to have more of a life, with friends, and not confined to my bed and home. The way chronic pain patients are treated is absolutely cruel.
One of the times I ended up in the ER due to excruciating pain, not only I was treated poorly and dismissed, the patient in the room next to mine was in such horrendous pain crying, screaming, and begging the doctors for pain relief, the entire time I was hospitalized. Not once was this patient tended to. Not once was this patient given pain medicine. Instead they were left to suffer in agony and reduced to crying and begging the doctors for many hours to relieve their pain. It’s inhumane.
Please stop the war on patients. It’s cruel and ableist, and causes unnecessary loss of life, loss of livelihoods, suffering, and death.
I was diagnosed with fibromyalgia 20 years ago and had to leave my job because of it. I have to take pain meds daily to function. I’ve been screamed at, physically threatened, told I’m a liability and use my meds as a crutch, doctor yelled at me to take myself off pain meds, refusing any direction or support. To add insult to injury this doctor and helpers spread nasty gossip all through the clinic about me. I caught them red handed and left, new doctor has force-tapered me claiming it’s all in my head. Abusing a pain patient is common, accepted easiest thing to do.
Iām Canadian and have felt the adverse effects of the opioid crisis. Iām a chronic pain sufferer and have been for many years. I have CRPS in my left foot. It IS the most painful disease going. Iām an RN from the old school of caring and empathy and relief of pain – not so anymore. Iām ashamed of my profession that they can be so dismissive and cold. Shame SHAME SHAME on all of us!!!
I am here searching for a way to stand up. You have to go through so much BS from a pain clinic, and the pharmacist look at you sideways like you are a thrill seeker, drug addict or dealer. All because greedy doctors made a killing off of over-prescribing. So much I could say. But will anyone see it that can help me help myself and others? I havenāt been cut off yet. But I know itās coming. Anyone on disability and proven medical records to back it up should be cut some slack on all this craziness of how itās all run. I think the street dealers are losing money on heroin and cocaine. Or WERE before all this started. Now people are resorting to that and are going to die just trying to get relief.
I say we all pull together and try to do something about it. Itās not fair to us that need meds to function. The over the counter meds kill my stomach and do not help. I want to live my life and not worry about getting kicked out 24/7 or all the BS that comes with it, and being treated like scum. From all concerned. Itās a crying shame is what it is. And all the big pharmaceutical companies have been sued for billions – and recently. Thatās like suing an automaker because a drunk driver killed someone. No, it was greedy doctors that caused this. All of it. Now, we have to suffer. Some idiot in New York thought this was a good idea back in 2012, and here we all are. Thatās what Google said back then anyway. But we need to form something and take it to court. We need smart, hungry lawyers to go with us. Period.
My pain started one morning in 2007. I was working, and had a life. Woke up one morning and had a stiff neck. Test after test was done and it showed I had nerve damage in my right arm. Then, an MRI was done and confirmed a rather large herniation at my C5/C6 vertebrae. I had my first surgery in November of the same year.
I go through 2008 in a lot of pain. Come to find out, the hardware had collapsed, so my neck had to be redone. The doctor didn’t want to do it, but I told him I wanted my neck fixed. During that surgery, screw pieces were broken off in my neck, but the doctor never disclosed this information (I will later get into how I discovered this). March of 2009, they revised my previous surgery, said everything went well and I should recover fully.
So, I see my pain management doctor for years, primary doctor, neurologist – consult after consult. Injections that never worked, botox, spinal cord stimulator. Still nothing helped the migraines. They also tried a headache trial in the hospital over five days. All that did was make them worse, and several trips to the bathroom. I was told that it my medicine was the reason for my headaches. So I give up those medications, and I still had the headaches. I told them that normally when I have headaches, it’s because of my neck. I was then made to wait for five years. Doctors pulling “There’s nothing wrong with you” and misdiagnosing me. Getting me hooked on meds and then taking them away. Force-tapering or not giving them at all. Then, making me look like I’ve done something wrong.
So during this time the neurologist wanted to get me off all the meds and do ketamine. I told him that I wouldn’t be able to tolerate coming off it, and he pushed it on me. I finally got an MRI. It showed that osteoporosis and facet joint disease in my C3/C4. But still was left untreated for some time.
Fast forward to February 2021. I meet another surgeon but actually the one who did my back surgery in 2013. He did a bunch of tests. One of them was a Nuclear Bone Scan. He explained that it showed my previous neck surgery. The areas that were orange or pink show where your pain is.
One of those areas was where I had my previous surgery. It looked like Christmas morning. I was shown images, but never was fully “explained” everything. April 5th was my surgery date. I woke up from surgery in a lot of pain. I knew something was wrong and they told me it’s because you just had surgery, give it time, arthritis is probably settling. I got ignored. They discharged me with a 100.5 degree temperature.
When I got home, I took the dressing off and I had blisters. The next morning I started feeling symptoms of a UTI. I spent three days in the hospital altogether. They gave me a prescription of meds at 9 a day, I took no more than 5. (I would have rather went through childbirth, or pass a kidney stone than to have to go through that pain ever again. Because he took a bone graft from my right hip.) They gave me Narcan in case I overdosed. I then got into an altercation with my landlord so he evicted me. Gave me two weeks to move out.
I did packing, trying my best to do everything as safely as possible. My coordination was off and I fell. When I moved, I did not lift anything. But I started having symptoms: tingling in my hands, a lot of pressure in my neck, exactly were I had surgery in April. So I went to the ER. They discovered that a herniation in my C6/C7 had slightly increased. I go to my pain management doctor to talk to him about it. He says everything is fine. He didn’t even look at the results. At that time I asked for a referral. He told me that if I wanted a second opinion, I would have to do it on my own. Yup, he refused to refer me to another office, then grilled me like a police officer, and everything I said he turned around on me. I walked out of that office, came home and laid on my bed and cried. This was June and I was supposed to see my surgeon on July 7th for a follow up.
July comes and I go to my appointment. I had my advocate via phone for this appointment. They did X-rays. During that appointment I expressed myself, that I was scared that my surgery failed, because something wasn’t right. Because when I had the MRI in May, it showed unstable hardware and facet joint disease in the same area that was just operated on. He got mad, slammed the computer mouse on the desktop and went out to his assistant asking for MRI because I didn’t believe anything he did my surgery. During this time I asked him when I should get a COVID shot. He told me to not get it because it would slow my healing down. Mind you, he never put this in my chart.
I got the result through my patient portal. It said abandoned screw pieces – same as in January. He never went over the results, four on right side and two on the left. I then filed a complaint with the hospital and the health department. They said there was no misconduct charges found. But if I wanted to go further, I could, but one of the doctors I couldn’t do anything about due to statute of limitations.
I had my fourth neck surgery schedule for March 23rd, but the doctor “got sick”. They made me wait a year, then made me go through appointment after appointment just to have my surgery canceled. She even called and begged me to get my MRI on a disk so he could have it for surgery. I had to wait eight days. If I didn’t take the March 23rd date, I would have to wait until April 4th, delaying my treatment longer. Nobody would help me get to the hospital, so I had to take the bus and stay with family so I could get to the hospital the next morning.
March 23 I had my surgery. They removed 70cc of fluid from my neck in surgery. I had a drain bag for two days to make sure it was drained. First time they drained it in ICU, I had 70cc more. Then the prescriptions started. I had previously been on them from another doctor at 4 a day. They bumped it up to 6 day on top of 20 mgs of Valium. Then one week, they started cutting back. All I was told is you may want to contact your regular doctor if you aren’t comfortable. I WAS NEVER told that weaning was starting. I tried expressing myself and was made to feel extremely low about myself. My symptoms have returned.
I went to see him yesterday and he blows me off. I’m in so much pain and coming off this stuff again because a doctor who doesn’t know how to taper a medication down safely, shouldn’t be prescribing. He told me in that appointment “they aren’t equipped to do medication like pain management is”. I can’t go through this again. (Being put off like I’m nothing. I go to local ER and I’m treated like a joke, my primary doctor, too). Try and take care dear is what I was told with only an X-ray ordered. No concern that I’m coming down hard from meds but makes sure it’s noted I took them chronically.
That office prescribed and said I could take them, then treated me like it was my fault. The lecture about pain meds. But Valium is a benzo not a muscle relaxer nor is it used for pain. And that’s what they gave it to me for. They didn’t think I understood. I worked in the medical field. I knew it was for a short time. This is what I was told in the rudest voice ever by a medical assistant on a power trip. It’s so and so’s office and he put these rules in place for a reason. If you’re waking up having panic attacks, that’s not what we do here. (I didn’t start having them until they stopped the Valium.) But she was still right no matter what I said. John Doe for works directly under him and it’s my job to make sure they get enforced. There’s no negotiating. Ohhh he is putting me on a walking regimen. My pain returns after you guys make me come down hard from meds, all he wants me to do is exercise (I used to walk all the time. I know it’s good for you.) Nobody wants to help me. I never asked for any of this but was made to feel like it was my fault.
I did not ask to be ignored for a year. I’ve contacted several attorneys, even the attorney general, and they cannot help me. This is not fair, it is inhuman! It’s embarrassing enough to have to walk around with scars, but not ones I askeded for. I wouldn’t even have to take the meds if they would have done my surgery right. I’m traumatized and feel completely alone. None of this has been easy on me, but again made to feel like it was my fault. I’m tired of the covering-up and misdiagnoses. I deserve to be treated better than what I have been. These are all “highly “acclaimed doctors too!
I have fibromyalgia. Am a retired CNA. I have three herniated discs in my lower back and two herniated discs in my neck. I found a good pain management doctor who has helped me for six years. Now sheās retiring and I canāt find anyone to help me.
I saw a new pain management doctor two days ago. I’m on a minimal amount of opioid pain medicines that help me lead a somewhat normal life. He looked at me and treated me like I was a drug addict there for pain pills when the proof is right in front of him that the pain is real. Why are these doctors treating pain as if it was a crime? Are we elderly people going to have to suffer for the rest of our lives, just because of some people who abuse pain drugs.
For anyone who doesnāt know, it is legal for a general practitioner to give out whatās called 90 mg morphine equivalent dose which means theyāre allowed to give to you 90 mg of some pain medication legally. My doctor retires in July. I know sheās going to give me three months worth of pain medication prescriptions, but thatās all. Iām going to have to wean myself off my medication and suffer. Until I can find someone who is willing to prescribe me a small amount of pain medication, my quality of life is going to diminish greatly.
Iām tired of being treated like a drug addict. My pain is real and there is sufficient proof. God help us all. I donāt know what weāre going to do about this problem, but all of us need to speak up and speak up loudly. The government has taken over the doctors’ ability to treat us the way we should be treated – with respect. Pain is not a crime!
I got crushed in a machine some seventeen years ago. My right arm was flattened completely, and after thirty-three surgeries later, they did their best to rebuild it. I suffer with severe pain daily 24/7 and lately the last year or so I have been having a hard time getting my meds refilled after the doc has prescribed them – as if these pharmacists know better than my doctor and I do about what I am dealing with.
I am a mother of four. I have psoriatic arthritis and my spine in my neck is herniated in three spots. I also have fibro. I am in pain 24/7. I feel like a burden on my young children and husband, and I am in bed more then out. I was taken off of my pain meds because my doctor said the all the doctors were told they couldn’t write that type of medicine any more. I have many doctors, since then I have jumped through hoops, I have let them inject me with all sorts of shots, I have taken the antidepressants and gaba. I have done it all, no matter what I say or how I tell them that opioids was the only time I got a sense of relief, I just get reasons why they cant help me. “You are too young”, “You have kids at home”, “the CDC won’t allow me to write”, you name it they have said it to me. I have done everything I’m supposed to, I tried every medicine out there. I have no criminal record. I just want to have a day where I’m not in pain. My conditions will just continue to get worse. I don’t know how much longer I can take this. This isn’t life.
Up until two days ago, I went to a pain management clinic for just under fifteen years. The day I started at this clinic, of course I had to have a urine test. But after that I went there year after year for well over a decade, and my appointments lasted literally two minutes with the same doctor every month. About a year and a half ago was the last time I saw that same doctor. The clinic fired the receptionist for helping patients out and not strictly making our appointments 28 days apart. They do this to suck thirteen months out of a full year. Because that’s one extra month for every patient to have to pay for another office visit. It’s all about profits!!!
So they fired the receptionist and hired three new, I think doctors. And so for the past 16 to 18 months I’ve been bounced around between these three new doctors. About eight months ago, one of them said to me “Oh, I see you haven’t given us a urine test in a while, on your next visit you’ll have to give us one.” Then I’d go to my next appointment and nothing. This happened like three times. I remember asking him “Why what are you looking for” and never got an answer. The only reason I asked is because I smoke and wasn’t sure if they punish patients who test positive for weed. I got no answer anyway. In fact I started to get the sense that none of these new doctors liked me much. I don’t know why, but it was like they were in training and it was amateur hour.
I felt very uncomfortable being bounced between these newbies. They knew nothing about me except what was in my records. So, two days ago I went to my appointment and first thing this woman doctor calls my name and tells me to go into the bathroom and pee in the cup. No worries, I do so, then have my appointment, which lasts two minutes. I go out to make payment and this lady calls me back into her office. She says I have benzos in my pee. I said yeah, and? My psychiatrist prescribed me a benzo that I only take for panic attacks. It’s in my records. No one ever told me I couldn’t take them before. Out of the three new doctors and my old one that’s still there, nobody ever said a word.
Long story short, they want to punish me. Gave me two weeks’ supply and have to come back in two weeks, pay another office visit and $40 for another pee test. I said no, I refuse to be punished for violating a rule I never knew existed. And it’s hard enough for me to come up with $$ every month, no way I could do this twice. I had to walk out I was so pissed off. I left.
My father was USN retired serving 25 years. By the time he started his second career in ship building as a Master Machinist, he had one back surgery to treat a Vietnam injury. He spent four months in a body cast in 1985. Years passed of Dad working in shipyards.
1994 brought an industrial accident at the shipyard. An 8-inch steam line burst and swung down and burned my Dad and his supervisor, knocking them into the water. They were knocked unconscious but saved by co-workers. ICU for five months and another surgery was planned. Shipyard cleaned up accident site so workerās compensation was only option instead of manufacturer of steam line. Ultimately surgery was done and failed. One more surgery and improperly installed hardware was flipped and my Dad could walk.
Years later, Dad was cold turkey taken off the opioid and he had a seizure at work. He was unaware this reaction was a possibility. He defecated while unconscious. Everything changed. He was instructed to take med again. My mom and I drove him to and from work for two years. The company changed his job, using his expertise for tool repair only.
His personality changed. His physical healthcare was done at a clinic contracted by shipyard. Worker’s Comp case settled in 2002. He was a shell of the man he had been. All those years, going to doctor at same clinic and getting script, taking med that ultimately calcified his kidneys. Now it was 2014 and was given two months to live. Timeline was wrong but for the rest of his life he was treated like shit by newly introduced pain management clinic that PCP pushed my Dad into with a referral that read āI inherited patient. IDK why he is on medā. That doctor had been writing script for seven years. Dad was unable to comprehend what was happening. Why would his āgreatā doctor abandon him?
I assembled forty years of records and took my Dad to Naval Medical Center and arranged to have a myelogram. Had it sent to spine specialist down the road. He was expert in his field. He said there was no way he could help my Dad considering his age, conditions, and how the past surgeries decreased his chances of getting positive results. We got a second opinion and there was no solution for my 73 year old widowed father.
It had been a little over 18 months that we fought for med to allow Dad to breathe. Nutrition changes and keeping his glucose in range lengthened his life but the stress of being a patient on that medication was too much for him to manage alone. I was forced to advocate for him. I searched for answers about how this issue with pain med and my Dad happened. Nothing contained in his record warranted any action that was required of my Dad. I wish I could claim to have been the dutiful daughter because I am kind and my parents raised me right. I am kind but I was forced into that position by a government who jumped into a situation without a plan to help those already affected by prescribing doctors who werenāt looking into med and treating my Dad with alternative therapies. It was too late. He died on March 4, 2020.
Thankfully, I was there when he died and his legal documents made that time easier for ourselves and paramedics. He was not a litigious man. He wanted to die at home. No hospital. Story should be over but I am so affected by that ordeal.
Denied opioid pain treatment? American Medical Association AMA wants your stories!
Video channel from Dr. Thomas Kline, MD, PhD: Medical Myths Revealed
https://youtube.com/watch?v=iGjKHrD1OW0
Crap site get real and let’s form a stand-in and get our reps to listen to us or leave Maine because they have no compassionate care here in a “pill state”. 31 years on Tramadol, so many disabilities, and they just wean me from just eight. My life has gone into a spin not to mention my health. They want to stick pain patients with the addicted. Shame Shame
Punishment for seeking pain medication post-op botched dental surgery UCONN.
POST OP: 7 visits to Charlotte Hungerford Hospital ER following fall due to post operative pain. Ignored by UCONN request for pain control. Wrote letters to Dr Ruiz and head of dental school. Told TO CEASE CONTACT WITH THEM. No I wonāt. Currently trying to get implants; doctors are both afraid to prescribe pain meds to set posts
Following UCONN DISASTER: Dr Kenneth Finn gave me an accurate diagnosis; UCONN LEFT MY JAWBONE EXPOSED. He finally gave me pain meds after my review of him as poor GOT HIS ATTENTION. One script, and his “poor me” whining. Surgeon Weyman agreed to give me pain meds for 18,000 dollars. After surgery, one script, not adequate. Called office five times, no response. Weyman’s nurse just lied to my face prior to post implant bone implant bone grafting, totally committed to no pain issues for THEIR PATIENTS. What BS. Weyman finally confessed he was limited by DEA IN TREATMENT OF MY PAIN. Iām reporting all of these Connecticut physicians.
Then I fired my primary physician, Dr SHARIFF of Hartford Healthcare, for refusing to treat a second outbreak of Shingles pain. Lidocaine – are you kidding?
Lawsuits no one will touch THESE GODS / Demons
Every doctor in Connecticut has confirmed that they are afraid of prosecution; not concerned with our pain because of their licensing. They are BREAKING THE HIPPOCRATIC OATH: “ABOVE ALL DO NO HARM”. THEY ARE VERY COMFORTABLE WITH OUR PAIN LEVELS AT “HIGH”. Iām sure they have a healthy supply of [pain meds] for their family.
I am a 54 year old woman who suffers from rheumatoid arthritis. I canāt find a doctor who wants to help relieve my pain. They do however want me to take medicine that has severe side effects. I have been suffering for years. Some days the pain is so bad I canāt move. If I ask for pain medicine Iām told flat out NO. There has to be help out there somewhere.
We should all file claims for disability – inundate disability offices with applications as this denial of effective pain treatment has caused many of us to become truly disabled. Make sure you get copies of your medical records, lab results and imaging. Almost every state is required to provide a patient with a copy of their record.
I am over 55 years old, and have severe arthritis in my neck and my back. I have had about eight or more injections in my back that did not help. I have a good PCP, however had to kick me off my pain meds because I had illegal marijuana in my urine. Been in pain ever since, had to get on subs, and I can’t stand them, but this is why people are forced to get illegal drugs and OD.
I have arthritis so bad that I donāt sleep at night. The pain is so bad that it interferes with my appetite and I donāt know what to do at times. I cry all the time due to the pain being so excruciating until itās unbearable.