Tell your story of living with chronic pain, by leaving a reply at the bottom of the page. Do not mention specific medications or dosages. Stories are not published right away.
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Hi I’m Crystal I’ve had back pain for years that has been ignored and I have been shamed for it. Last year I had an MRI done and it was bad. I have moderate spinal stenosis and a bone spur that has torn into my spinal cord, causing me the pain along with facet arthritis. Instead of treating me the doctor told me to lose weight and my back would fix itself. I’m only 28 years old and all I was asking for was to be able to play with my kids age 5 and 2.
I’ve been living in pain for most of my life. I’m 46 years old and I was on pain medication for years. Now I have been forced to suffer in pain every day without anything. Doctors have taken my medication away from me, making me feel like a drug addict, and made me have to go find other ways to get something for pain. I’ve lost my home and car and even been put in jail because of this. I was on medication for 15 years before all this happened and was yanked off all my medications at once. That made me have four different seizures. It’s not fair. I need my medicine back I can’t live like this anymore.
I’m terminally ill now from cardiac and pulmonary disease and Mitochondrial Disease. But my issues started in 1993 after I was attacked by a stalker who continually attacked me for over a year, destroying my cervical and lumbar. My right arm was dislocated in one attack when I was thrown six feet. I had my lumbar spine stepped on and was hung by my hair in separate attacks. I’m in a level 8 to 10 pain constantly due to those along with Fibromyalgia and Elhers Danlos Syndrome and Gastro issues along with it. I’m on five liters of oxygen as well! Awaiting an electric wheelchair!
My name is Cassie, 39 years old in Texas. My pain started July 13 2015, after a doctor almost killed me during gastric sleeve surgery. Just since then I’ve had 9 major surgeries, over 4 dozen procedures including 14 drain tubes placed, my lung collapsed in 2016 requiring an emergency thoracotomy where they had to split my ribs to save my life. I had a feeding tube for almost 8 months. I also now have a broken back, been diagnosed with COPD, as well as PTSD, anxiety, insomnia, night terrors. My pain and mental health are connected in a vicious cycle (night terrors cause me to thrash in my sleep causing more pain). I’ve been trying for over 3 years to get into pain management. I’ve used illegal drugs to just be able to function and get out of bed. I’m tired of living like this. I’m just barely surviving life, and every day it’s a mental fight to stay.
I’m only 29 years old but I have suffered with chronic pain for many years. I have severe scoliosis and have been in two serious car accidents, breaking both of my arms – one requiring surgery which left me with plates and screws in one arm, and a dirt bike accident that broke my tailbone. I also have been diagnosed with degenerative disks in my lower back following an MRI, as well as widespread joint pain throughout my body.
For years no doctor would listen to me or hear my cries about how I was struggling day in and day out just to get out of the bed every day. Many told me I was “too young” to be in pain and to exercise more, that it would fix everything. I was already a very active person.
In the last five years my pain has progressively gotten worse, so much so it has chipped away at my mental health. I became depressed and at times suicidal [because of the chronic pain]. The pain would wake me in my sleep and rob me of all of my energy and positivity. I have two children – a two year old and a newborn, and I was struggling to take care of them and play with them.
Enough is enough. People living with chronic pain are a special group of people. We live in misery every day, in pain and exhausted, and still are expected to be productive members of society, good mothers, good fathers, and good employees. Yet we are treated like less-than and made to feel guilty about wanting relief. This has to end.
In chronic pain since 1987. Autoimmune disease (muscle, skin), 1991 avascular necrosis, 8 major joint replacements, hips both redone, severe spinal stenosis, need crutches to walk, blocked ivc filter, needed 5 6-hour procedures to stent open blocked leg arteries. And now with pain at all time high, doctors are treating me like crap, forcing me down on my meds … don’t give a crap about my suffering. “CDC rules say” wtf – after 35 years CDC dose will kill me. God please, raise up someone to re-look at these rules. We’re all different. Thank you
I’m a 73 year old woman. I was born with Spina Bifida Occulta. It was diagnosed when I was 16. Yes! 16. I have had a backache ever since. I am now 73. I have scoliosis. Also five back fusions. I now have a lipoma on my spinal cord which is inoperable, because all the nerves from my bowel and bladder run through it. I have been on pain meds most of my life. I never abused nor was addicted, but they helped me function. When the opioid crisis started they took me off everything. They made me feel like a junkie. I’ve been to three pain managements and they will only give me something for nerve damage. I’m so depressed. I’m not living, I’m existing. Plus I’m taking care of a husband who has dementia. I cry every single day. I don’t want to go on. Please help me! I thought maybe a lawyer could help me or going to the media. I’m desperate!😢
Ty!
J.D.
I have suffered with severe pain since 1995. I was originally hurt at work. My care was put off for two years. Once I finally got a proper diagnosis, so much scar tissue and damage had been done. I have had over fifty surgeries/procedures. I resorted to having a Spinal Stimulator implant done in 2017 to try and help my pain. It worked great at first, and the doctors drastically cut my medications by two thirds. Well now the stimulator no longer is working, yet I cannot get my medications back. I had a complete removal and replacement of the spinal stimulator done just last September and it is still not working. It is now causing me heart and breathing issues. Nothing was ever fixed, it’s only a bandaid, yet my pain medications were taken away. I am 99% bedridden with severe pain. I have a damaged Brachial Plexus nerve branch bundle.
I am now 60 years old. I was diagnosed with lumbar scoliosis at 16 but my parents never did anything about it. I lived an uneven but pain-free life until my late 40s when the curvature became worse and arthritis started to set in. At this age, I was considered too old to successfully correct the curve and the pain was debilitating and persistent.
I was referred to a pain management specialist who put me through years of non-drug and non-opioid drug treatments including a spinal cord implant which left scar tissue and even more pain. Opioid medications were a last resort, but I reluctantly took them to continue working and have a quality of life. I’ve been on these medications for 10 years, following all the strict rules required to continue them.
Finally 3 months ago, the clinic I had been with, abruptly closed. The new doctor I was referred to, punitively shamed me for being on opioids. (I was taking 2 medications: one 3 times a day and one for breakthrough.) He told me “pick one! I wont prescribe you both!” His ignorance and lack of compassion has left me with high blood pressure, insomnia and severe pain and has denied me quality of life in what are now, my twilight years.
I am so glad that there is this website trying to help people that suffer from chronic pain. My loving wife suffers from chronic pain, and has for almost 10 years now. It has become harder and harder for her to continue to get her needed pain medication so she can function normally during the day due to her interstitial cystitis. I have had to change insurances a few times over the years, and it is always such a nightmare getting her pain medication started again. She has had delays due to policies not wanting to be grandfathered-in and other crap like that. She is a model patient that her pill counts are always right, everything always goes well, yet according to the government and the CDC she is part of the problem with the opioid crisis. I so disagree; the opioid crisis is people that illegally use pain medications for that high. It is not people like my wife that just want to try to have a normal day, or she can possibly enjoy herself for a few moments and not be totally miserable.
I was diagnosed with Crohn’s and ulcerative colitis. Been to the doctor and ER many times. Last time I went to one of our local ER they told me they couldn’t treat my pain because I had two different people writing my meds. Both were ER docs because no one else will help. It’s horrible to be looked at as a drug seeker when you have real pain. I hope one day the people realize how cruel they are.
Ive been living with severe degenerative disc in my back and neck and knee issues for several years and cant get any help.
It’s not clear weather I have crohns or ulcerative colitis. I got my entire large intestine removed in 2019. Since then I have been in and out of the hospital er and doctor appointments. I get judged every single time I go in and am now forced to taper off my pain medication and only other option is for them to lie and misdiagnose me so my insurance will pay for suboxone.
I live with severe back, leg and neck pain. From deteriorating disc disease, fibromyalgia, and a form of auto immune deficiency like arthritic type (have to see another specialist for this diagnosis). It hurts me tremendously to get out of my bed in mornings, from opening my hands to putting my feet on floor then walking up/down my stairs. All I ever hear is if you lose weight you’ll feel better. How can I do this if I am in constant pain and exercising makes my pain worse. I’d love to be able to exercise or walk or even go grocery shopping without being in a ridiculous amount of pain.
I’m only 43 but seriously feel like my body is 93. I get told “if you’re looking for pain meds then you’re in the wrong place” OR “We don’t prescribe narcotics at this practice” before they even look at my chart. They see my tattoos and piercings and automatically assume I’m a drug user. Which I do not do drugs, smoke marijuana, nor do I drink any alcohol. I’m so sick and tired of being in pain and nothing/no one helps! I’ve gotten to the point of thinking I’ll never amount to anything else in my life because I just cannot do things like I used to! My depression and anxiety is worse than ever. I never want to leave my house. I don’t wanna hang out with friends anymore. I try so hard as a single mother every day just because of my 8 year old son. He’s my life!
I feel defeated! I’m hating the way the world has become! I hate the way doctors and nurses treat me. I have dond every single type of treatment they’ve suggested – example nerve blocks, radio frequency fusions, epidurals etc. but these procedures are painful experiences. And I don’t just ‘bounce’ back to normal anymore … it takes me weeks to recover! I feel so bad for my son… like not today honey Mommy’s hurting too bad! 😭💔
PCA Pain Care of Wallingford, Connecticut incorrectly interpreted dozens of drug test results as positive for drug use, when in fact they were expected results of impurities found in prescriptions made by PCA themselves. These false interpretations were then distributed to pain clinics throughout the State of Connecticut, preventing patients on state insurance from receiving proper care. These mistakes were made because PCA:
1. Did not report medication lists to the laboratory.
2. Did not consult the laboratory about the frequent low-level positives, despite the laboratory having a “clinician tools” page on their site that listed all the impurities.
3. Knowingly used the unauthorized cutoffs of Precision Diagnostics, that greatly increased the likelihood of false positives; cutoffs are ten to twenty times lower than any other laboratory in the United States.
4. Was not aware, as they are required to be, that THE OPIOIDS THEY PRESCRIBED HAVE IMPURITIES OF OTHER OPIOIDS IN THEM. From 2014 to 2016, 70% of their patients received some formulation of oxycodone. ALL OCYCODONE HAS HYDROCODONE IN IT. Additionally, MOST OTHER OPIOIDS CONTAIN IMPURITIES AS WELL.
The cutoffs can be found in Table 3 of this paper: Web page or PDF Document or Table 3. “Citation”: Pesce et al. Interpretation of Urine Drug Testing in Pain Patients. Published in Pain Medicine, Volume 13, Issue 7, July 2012, Pages 868–885, https://doi.org/10.1111/j.1526-4637.2012.01350.x
5. When they were made aware of their mistake by a patient with experience interpreting similar tests, they accepted this patient back and did their best to cover up the mistake.
As a result, patients were left to abruptly withdraw from high doses of medication. They were labeled as drug abusers and unable to find proper care thereafter. They were denied disability because of falsely documented drug abuse. They may have committed suicide. They may have turned to street drugs. They are likely enduring high levels of untreated chronic pain and PTSD. They are desperate. They don’t know why it happened to them. They are afraid to tell their story, as it is so easy to dismiss them as drug abusers.
Because the impurities were a result of the clinic’s own prescribed medications, and based on varying levels of prescribing and impurities within the medication, not all patients, but an alarming number, suffered this terrible fate. Worst of all, THE PATIENTS ON THE HIGHEST AMOUNT OF OPIOIDS, WHO WERE DETERMINED TO BE IN THE MOST PAIN, WERE THE MOST LIKELY TO TEST FALSE POSITIVE.
If you know anyone who attended this clinic during 2014 to 2016, received care from Ben Robinson, L’Erica Williams, Dr. David Marks (the fall man so far, fined $7K and currently serving probation on related charges of not following opioid protocol), or Theodora Fraser McPherson, please contact me at 203-805-2545. Let’s hold them fully responsible.
Just had to wait 9 days WITHOUT any pain meds. Fry’s pharmacy said my Belbuca patches were not ready, then they said I could not have them on the day I came. Then, I was not able to get meds because opioids are in a timed locked box. What is the rule. Let me tell you 9 days with none of my regular medications is a slow horrible, agonizing wait! This has been happening for the past 6 months. CVS pharmacy will not carry any opioids for me. I have Lupus, M.S. and kidney disease. Can only use a scooter, and have been this way for 30 years. Why now do people think I am some kind of drug seeking addict? It is cruel. Do I need to seek counsel?
Five major spinal surgeries. Countless procedures. Fusions at L4-S1 and C3-6. Five additional bulging discs. 10 kidney stones with 3 surgeries for removal. Prostate Cancer.
Constant, stabbing, penetrating, radiating pain. I am required to see my pain specialist monthly to receive my medications. I have to provide a urine sample during each visit. I don’t want to take pain medications. I try to minimize the use of pain medications. But, I know pain. It is my constant companion. My pain specialist is afraid that he will not be able to provide the needed medication to patients like myself due to a few bad apples.
Why do politicians, pharmacists, insurance providers all want to determine how I am treated for pain? They don’t know my situation. They aren’t qualified to prescribe. How is this allowed to happen?
I badly shattered my ankle and had a complicated surgery without of metal. My pain was horrific initially after surgery, and (due to the opioid crisis) they didn’t provide much pain relief. I had to beg and plead for Tylenol and ibuprofen with my percocet. Bone pain is the worst of all the pains, and yet, they wouldn’t even give me morphine. I’ve never had any history of drug use. Not even marijuana. They made me feel like a junkie begging for relief.
I had a minor back surgery go wrong that led to an infection and a double laminectomy. I am in my early 50’s and walk like I am 90. I still do normal things but I know that I will barely be able to crawl later. If I keep doing things like shoveling, the dishes, and sweeping it makes doing easy things possible. There are really really bad times where a painkiller would be really good. I spent years on them after my surgery and have no desire to go back on them but some times I could really use one. When I explain this to my doc he looks at me like I am some kind of junkie looking for a fix. Why should I feel like a criminal just for wanting help on bad days?!?!?
Years ago I had multiple back and leg surgeries after a bad car accident. While recovering my doctors understood I was going to be living with a lot of pain. They had me on a trial of several different opiate/opioid medications with varying dosages to find effective relief. Finally they discovered what type and dose helped to reduce the pain enough for me to have some quality of life. I was doing well for a few years then CDC guidelines and DEA enforcement began.
Because I had medical documentation of my illness the DEA was fine with my doctor prescribing my medication treatment. When my doctor retired I couldn’t find another doctor who was willing to continue to prescribe the amount of medication I had been taking because it was beyond the CDC guideline limit. To them my documentation and perfect record didn’t matter. I now get 1/4 the medication I was getting and no longer have a quality of life. I’m not sure how much more pain I can endure. I have begun to reach my limit.
If I was a drug addict wanting to get high I could get plenty of Buprenorphine medication from the doctors but I don’t want to get high and that medication doesn’t help my pain. I learned the doctor would even get paid by the government to prescribe that medication and would make thousands of dollars more to include back injections. I also learned that the people who helped with creating the CDC guidelines own drug rehab businesses and have been making huge fortunes by cycling patients through them. These patients would also receive Buprenorphine medication.
The more informed I become about this, it seems to me there’s a self serving situation happening with those that created the CDC guidelines. I have begun to see this with the Covid vaccine situation as well, learning politicians are receiving stock profits from it. If I ask for help from the hospital, they’ll take my insurance and my money but I will only be told how they can’t help me as they don’t give pain medication. Pain patients and patients in general have become only something to profit by not to be cared for.
How are we going to get enough pain medicine? The type I take isn’t likely available on the streets. What is it going to take to stop this madness before all of us die from the suffering? Or is this what the government wants? It certainly looks that way.
I have been in severe chronic back pain for 30 years. I’ve done shots, physical therapy, machine put in my back … on and on. They make you feel like a drug addict. I’m on disability for my back and they still won’t help. The reason people became drug addicts is because they cut everyone off after giving them like candy. The pain was so unbearable … they turned to cheap street drugs. I even weaned myself off for 3 years but the pain is too great. All I see is red all day if pain was an actual color.
I’m a thirty-year-old mom of three who suffers from a cardiovascular disorder. There is no cure, there is no surgery, there is nothing to do besides suffer. The only way I can eat and stay above 90 pounds is through low-dose opiates. Doctors understand how painful this debilitating disease is. But it seems that Walgreens has full control over my treatment. No matter what surgeries or procedures I get, Walgreens is always there to tell me no. They minimize my pain and efforts to be a healthy happy mom. Don’t punish people who want to have any type of normalcy in their lives or their children’s lives. Chronic pain does not only affect a patient. Family suffer too.
Hello,
Currently I receive sporadic pain control. As stated by Lindsey, Walgreens pharmacy in my location also abuses their power over clients. Each day must be carefully planned. For me it’s a quality of life issue. I’m also tired of being labeled and judged by political and medical entities.
Doctors in North Dakota are terrified to prescribe pain meds even to people who need them occasionally for very severe pain and have used them without addiction or any other issues for decades. The best way to give them back their discretion, I believe, is through a ballot measure that protects them rather than relying on legislators. I am one of the people I just described, with an ORT score of ONE because of a brother’s use of alcohol – otherwise it would be zero – and will be in an unbearable situation when I run out of pills prescribed by my brave but now retired doctor. I also have extensive experience with the initiative and referendum process, having worked on many state measures and for a national institute dedicated to the process. I can do I&R. Looking for allies in ND and suggest people in other states do the same. (It takes a large group to succeed in this, but I have worked with such groups – including drafting three measures and producing petitions – and hope to build one.)
It’s so hard to find a good doctor. I’ve had chronic pain for as far back as I can remember. Pain medication has no effect as my enzymes eat them too quickly and other medication is barely effective or does the opposite because of my system. However, no matter how I explain it to doctors they give Vicodin and label me an addict. Even though I can keep the same 10-20 pills they give me for months since they aren’t effective. I’ve even had a pain doctor stop my appointment to go grab all my medication because he believed I just sold it. I was angry and hurt and they were embarrassed when all the medication was there. But they refused to do any more for me. My primary attacks my weight constantly, but if you can’t move, how do you lose weight. Finally I was referred to another specialist and had surgery which helped one area, the pain down one leg, but has set off others. I have several specialists due to my conditions and all of them are nice but won’t give anything for pain. Just pile on additional multi symptom medications and give me a look of judgement when/if I ask for anything else. To the point of taking so much medication I can’t eat but am still in pain. My pain tolerance is very high and pain response is different. This then causes more issues.
I want to have a semi-normal life and instead I’m constantly anxious and nauseous from pain. I’ve learned to push through on certain days but it puts me out for days after.
I’m 32 years old. Two years ago I ended up on life support and in a coma due to medication nurse gave me while in coma I got a blood clot in my leg I have avascular necrosis in multiple bones in foot and ankle deformity and a bunch of other problem know I’m having issues and being denied for help with pain no surgery can be done the damage is done I shouldn’t get denied for any service when this was done because of medical professionals pain was never managed and now I’m being denied
I am a 43 year old veteran. I suffer from both DDD and most horrific Chronic Pancreatitis. Before the 2016 CDC Guidelines I had a doctor that prescribed me what my body tolerated. After the guidelines my doctor quit, and I had to find a new doctor. The new doctor will not prescribe above the guidelines because he is worried of the DEA. He does not agree to the guidelines.
This year I spent two weeks in rehab. I had surgery and was in horrific pain. Due to rules I was only able to get one extra pill. I looked to the street and ended up with pressed Fentanyl. I then could not get off of it due to severe withdrawals. I tried to ween myself off, but it was too strong. I went to rehab two weeks. I had doctors there diagnose me with Pseudo-addiction which was a life saver – if I did not get that diagnosis I would have been kicked from the pain program.
I suffer daily with pain. Last week I spent it in pain from Pancreatitis in which no one could get me a bed because of so many Covid patients. I had to suffer because I cannot get what is needed to control pain. I want to tell my story and help others like me. This is horrible to be punished.
I am a 33 year old mother of two. I’ve had pain for as long back as I can remember. But in 2010 things changed. I was hit in a very bad accident that totaled my vehicle. My body wasn’t the same after that.
I live with chronic debilitating pain daily since 2018 when my doctor cut me off my prescription pain medication that I had been on for 8 years. Cut me from 6 to 8 pills a day down to 2, then put me on bupranorphine/naloxone. What I didn’t know because I trusted my doctor was that they put me on too high of a dose. Combined with my other medications caused me to have black out periods. Now I can’t drive because of the fear of it coming on suddenly. I’ve been to multiple specialists because I have fibromyalgia, Sjögren’s syndrome and connective tissue disease.
But in 2018 I couldn’t handle the pain and memory loss. I told my doctors I was afraid I would commit suicide because I was in so much pain, and I did I attempt suicide in March of 2018. I just wanted to die. I couldn’t handle being in pain and letting my daughters down as a mother. After two weeks in treatment for my PTSD and depression, I came out hopeful that maybe my doctors would take me seriously … Ha yeah right now I’m even more of a risk.
I don’t want to be in my body anymore, but at least I have found a couple natural options like kratom and CBD to help. Kratom has been demonized and is at risk of being federally banned. I don’t know what I will do if that happens. Unfortunately I’m stuck in a state where medical marijuana is still illegal for most people. I found out I can get my card because of my PTSD (Texas just added it to the compassionate care act) but it’s so freaking expensive and insurance doesn’t cover it, so like everything in the medical industry, if you don’t have a lot of money you’re shit out of luck.
I’m just so done but I keep fighting to stay for my kids’ sake. I wish this damn opioid epidemic would just end already, so those of us who need our medications can get them.
Amanda, I’m so sorry that this is your life. You are not alone.
My story is like so many others — I am a 74 year old chronic pain patient, as a result of an auto accident in ‘91. I’ve been in physical therapy so much that a rehab doctor I was seeing asked if I’d read and comment on a book he was writing because I have learned to adapt standard exercises to my own level. I have had three lumbar and one cervical disc and fusion surgeries. My diagnoses are DJD, spinal stenosis, osteoarthritis and now scoliosis. I was in pain contracts for almost twenty years, and all drug screens were clean. I have not abused my prescriptions, nor sold or given them away, and I have never taken anyone else’s medications.
Recently, I moved to a dryer, warmer climate, thinking it would help my back pain. Unfortunately, I didn’t know about the algorithm used in the program Narxcare database, that incorrectly determines my probability to become an addict. Dear God, with this system, people like me are doomed! I am dumbfounded to learn that Missouri is the only state that does not use this system, but it is reported that it, too, will soon use it. Are you aware that all doctors and pharmacists have access to this program and that it is also made available to the DOJ and police departments? Did you know that your diagnoses are not included? And, if you are referred to another doctor, as I recently was, did you know that the algorithm interprets that as doctor shopping? Never mind that the referrals were to an oncologist and then to a cardiologist. Unbelievable? So is this — the meds you get for your pet are listed under your name, and the algorithm says you are also taking those meds. Gets better, folks: if you use a discount prescription card and buy a med at a different pharmacy than you normally go to, that is interpreted as drug seeking.
I just want to retain as much mobility as possible and to have the best quality of life my condition will allow. The current system is broken and I am held to an algorithm standard that is even more broken. Why are my diagnoses not listed? Why should I be held accountable for an addict’s choices? Why can’t the medical profession understand that most of us will not abuse or sell our meds or purchase street meds. We just want help to live as normally as our conditions allow!
We need to fight and eliminate NarxCare and give back to our physicians the ability to again treat patients in an educated, compassionate way!
I am 66 years old. I have blood cancer (dxed last year) I have been on routine pain management for CRPS related to my service-connected disability. I also have spinal stenosis, Systemic Lupus and structural scoliosis. I have tried acupuncture, spinal injections, and many other non-medication treatments. I have complied with all rules in the opioid contract. I have also sustained 19 fractures from the blood cancer. I moved to Florida and the pain doctor wants to take me off of all pain meds. He said I can go to an outside pain clinic. A patient advocate told me that the VA doctors get incentives like cash bonuses for getting the most veterans off of opioids. I have decided that if this happens I will stop all care and just allow nature to take its course. How incredibly cruel.
You could go to a pain doctor and get help! I’m soo sorry, I hope you get the help you need, there are some compassionate doctors left in this world! Some good ones in Florida, please feel better god bless
My heart just bleeds for you. You poor woman. Don’t give up, I will pray there’s a doctor out there for you that will help you, stay strong. I know you already are, very much so by your story. Keep looking, keep praying if you do, and I have heard there are doctors in Florida oh, I will try to find out where.
My mom and I have been with the same doc for almost 10 years no other doc and we got to that doc by word of mouth from our cousins, we didn’t need a referral. They got dismissed because of doctor shopping and abusing meds, in and out of jail and prison. In the meantime my mom and I every single month passed all drug tests, if asked for brought original bottles empty or not, went to all referrals. I have been under pain management for *PANIC ATTACKS *DEPRESSION *SPINAL STENOSIS *DEGENERATIVE DISC DISEASE *UTERINE FIBROIDS *SPINAL STENOSIS *SEVERE ARTHRITIS IN MY LOWER BACK *SEVERE ARTHRITIS IN BOTH OF MY KNEES I WALK WITH A CANE *3 DISC BULGES IN MY LOWER BACK *2 DISC BULGES IN MY NECK AND THYROID CANCER SURVIVOR. NOW ALL HAVE BEEN CONFIRMED BY SO MANY *MRI’S *CAT SCANS *X-RAYS.
To make a long story short my two cousins were the only ones who knew were we went. My cousins always bothered me and my mom for meds and I’m a live wire so I went to her house and lit her street up. I told her to leave us the heck alone You have been kicked out of so many docs so please leave us alone asking us for meds or to buy them.
The next month I went to my appointment and when I went in the room my pain management doc of TEN YEARS looked at me and said is this your regular monthly appointment? I said yes and he said I receive word that YOU ARE SELLING SOMEONE ELSE’S MEDICATION. I’m in shock and all I could say over and over that it’s not true and he’s 74! He said you’re going to need a police report and I’m going to have to discharge you. I went to my vehicle called the police on the spot. They talked to my doc. The officer said ma’am the doc said it’s not you that needs a police report IT’S YOUR MOTHER! I don’t know what to do. He discharged me cold turkey. My PCP won’t bridge me over and I’ve had five docs turn me down.
This is every area of my life being affected. I even called the DEA and CNT for help for this excruciating pain I’m in, and they said they could not help me. Sir I’m begging you with every fiber of my being to please help me. And the main thing – the doctor was supposed to NOT RELEASE ME COLD TURKEY! Thank you in advance for your time and attention.
Rules are imposed on people not knowing a single thing about them. Prohibition never works.
I have one of the best GPs I’ve ever had. He released me to “pain management” about five years ago. I asked him what are they going to do? All he indicated was he could not write prescriptions for pain.
He was the second doctor who went from an easy-going kind doctor to one that looked like he had a gun held to his head.
He left the practice but I’ll tell you what he left a gift for me – his NP. She listened intently and made sense about short-acting pain medication. You’re just chasing the pain and it doesn’t cover waking hours let alone all night.
She prescribed the lowest dose of patches (lasts 2 5 days not hours but it burns my skin horribly so sadly I had to switch to Opana. A Godsend. Then Big Pharma/Insurance decided it was too expensive, as all extended-relief prescriptions are. I’ve since switched to a 24-hour pull. Still doing great.
It blows my mind that most patients are not taking this. You can’t tamper with it. Some are stuck on chasing their pain. Why? They are all expensive so somebody somewhere is benefiting from it.
We have a hugely corrupted medical system. We are charged $30 a month because these are “specialists” and drug tests (at my age). Labs are getting over $1k each test. Employers are asking for tests before you are even interviewed!
My condition never changes and neither do my brief six-minute conversation with a NP. Video appointments had been used and were free.
We need to go back to doctor/patient trust and flexibility! I’ve never taken anything that I wasn’t prescribed.
Most patients and doctors agree so why isn’t this happening?
My point now is where can I move to in this country that aren’t ignorant about the law versus suggested guidelines? Arizona are the worst sticklers.
And believe me I take everything as directed (sometimes for breakout pain) and it improves my life I just cannot imagine my life without it. At all.
If there was a needed class action suit against the damage they’re doing I’d be the first one to sign it!
Hi, My name is Ryan and I am 39 years old. I have been taking pain and anxiety medication since I was 17 which is over twenty years now, my whole adult life. Slowly but surely over the last two years they have made it increasingly harder for me to get my medicine, either the insurance company, doctor or pharmacist. I have not been able to get my correct medication for a year, and for the last three months have been buying my medication on the street from stand up citizens. That is not a joke, it has come to that point. If I don’t have my medication it is extremely hard for me to even get out of bed, and paying street prices will have me broke in no time.
I have two young children and the time I’m missing with them will never be returned. The way the doctors and pharmacists act is downright disgusting and seems illegal. I have been lied to by them on multiple occasions. I know there has to be tons of people like me out there that were taking their medication AS PRESCRIBED and now are being punished. Which is another lie they tell people because the number of overdose deaths of people that were taking their prescriptions as directed and not mixing other substances must be close to zero. I take it a little further than most people in the sense I think all drugs should be legalized and controlled. My body, my choice!
If these drugs or medication help me physically and mentally I don’t see why anyone should be able to tell me I can’t have them. I lost a lot of people to overdose but I am an adult and don’t need the government or anyone else to “protec “ me from myself. Drugs have won the war and taking people’s legitimate prescriptions from them will lead to more deaths over the next 5 to 10 years than the last 5 to 10. We need to come together on this too so we can all stop going down the wrong path. If anyone has any advice or can help me it would be greatly appreciated. Thank you all and stay strong.
I’m a 36 year old mother of five children under 15. I was always active, in sports, cheer, my everyday life. I was 7 months pregnant with my second child at age 22. I had no idea what Ankylosing Spondylitis was and so really didn’t until the last eight year. Slowly I’ve become in my mind a vegetable and it continues.
I started not being able to get out of bed without some sort of pain. My hips started giving out and I would fall (pregnant). When I was diagnosed or was very quickly found due to the fact I mentioned my uncle having AS only in his ankles. My AS affects my whole body head to toe. I was put on low doses at the beginning of my diagnosis. After two years I was cold turkey stopped.
I live in a small town with one rheumatologist. I’ve only went to this office as my PCP can’t, won’t and don’t prescribed anything but my antidepressants. I want nothing more than to play alongside my children, be active with my family and for myself. The pain DAILY is unbearable. My original rheumatologist was fired for continuing to prescribe pain medications not to me but to his other patients, and was replaced with a California doctor who is a huge pain management nazi. He gaslight me, assumes, doesn’t listen, and I have no choice but to keep going to him for regular counsel because he’s the only one in my area. I’ve asked to be referred to others and insurance won’t have it. I feel abandoned, mistreated, alone. I feel like I am 95 years old trapped in a 36 year old body.
After 16 years of continuous pleading in this office, infusions that stop working after 1 to 2 years and the back and forth between injections and IV infusions (not for pain, for the slowing of the progression of the disease) I’m tired. Tired of not receiving the treatment I need, the treatment I deserve. My kids have to watch their mother fight a battle they too are susceptible to as it’s genetic. I was told by my current physician to not educate my children about my disease because I’m just putting fear and un-needed attention on their future. EXCUSE ME!?! My children should know exactly what I go through as they could also be affected. They need to know their mother isn’t in bed because she’s depressed, lazy, or using street drugs (heroin and detoxing… nvr used just an example).
Being sedentary brings extreme pain, but so does being active. Much more pain comes from trying to work out. Inflammation and fibromyalgia is unbearable. My skin beats red on the outside while my pain on the inside is invisible and progressing without any relief. I know I’m all over the place here but my life has been consumed at this point. I cannot work, I cannot smile, I cannot live. It’s not my fault I have AS that has also developed stomach issue like Crohn’s and gluten sensitivities. Osteoporosis, osteoarthritis, bone spurs but because I look fine my rheumatology SPECIALIST confirms to the DEA and a paycheck rather than helps his patient, me, myself…
Days are hard and getting harder. All I want is to feel just … OK. I’m not asking for my doctor to do anything but make my life bearable and I can’t even get that. It’s sad and worsens my depression and anxiety. I’m homebound, the pain distances me from normal life, and with five f*cking kids who need their mother.
One excuse that topped the cake was he justified my illness to his mother not having any pain meds until three days before she died and pulled up a YouTube video of Stevie Nicks’ battle with Kolonopin. Then proceeded to tell me I’d never get pain help from him because I have a teenage honor roll student who will take them to school and sell them out of his locker? What? I’ve recorded most all my visit conversations because they are so asinine and never leave his office without crying… I’m receiving the absolute best care because of…? I don’t understand. BTW, in writing this from my pillow in bed as I sit alone in my room wondering what it’s like to live outside of my home anymore. Covid didn’t impact me, I was already distancing myself due to my everyday pain… Someone help!
Alicia
I’m 59 years old, and I began using prescription pain medication steadily following a diagnosis of shingles which affected my V2 Trigeminal Nerve. I was never able to get off the medication because even though the outward appearance of the shingles cleared, the pain remained the same. It was like someone was pressing a hot iron against my face, more specifically in the area between the lower nostril and upper lip on my right side. If you can imagine the worst sun burn you’ve ever had that just doesn’t go away, this is what it feels like every single day. Five and a half years later, here I am still on the same medication because aside from risky medical procedures that could lead to complete numbness or facial paralysis, I have tried everything from creams and essential oils to acupuncture and cold laser light treatments. Nothing makes the pain go away, and the medication only takes some of the edge off so that I can lead a normal life and run my business.
Three years ago, there was a mistake made by my pharmacy when they entered the amount of the pills prescribed and my insurance kicked it out. My pharmacy was saying they did it correctly, and the insurance insisted they needed to re-enter. In the meantime, trying to work all this out, by 6 PM the following day without my medication I began to go into withdrawal. It was something I never experienced before – and never ever want to experience again. The abdominal pain, vomiting, head spins, shakes and sweats was enough to make me want to put a terminal end to the agony. My husband drove me to the emergency room and after two hours in distress I finally got to see the ER doctor and explain what had happened – who then refused to give me a dose of my medication to make me better. At that point, I didn’t know who I was, but I became something like Linda Blair in The Exorcist and lost my mind so bad that I began to scream and throw things in the ER room. Not only did that freak out my husband, but they had to come in and tie me down and place security in my room. After my husband talked privately with the doctor, he decided to give me the medication and admit me to the hospital, where I had constant security outside of my room. With a call finally the next day from my primary care doctor, the pharmacy and insurance worked it out, and things went back to normal. Well, sort of. I suffered some damage, in that for about six months I had a constant tremble and shaking issue. And the psychological effect of what I went through horrifies me to this day.
Today, I find myself in a different set of circumstances. Some nut job patient of my doctor’s had a fit when he could not get his prescription filled, and said something like – “my doctor gives me whatever I want” in his fit of rage at the pharmacy. At that point, the pharmacist contacted the DEA who has now forbidden my doctor from writing schedule II or schedule III pharmaceuticals while they investigate. When my doctor asked the DEA what he is to do about his patients that have refills coming up, the DEA said, “too bad” – leaving all of us completely without medication refills. The kicker here is that I also have an autoimmune liver disease – and can’t take any over-the-counter pain medication at all. So, even if I were able to taper down off my meds, there would be nothing else available for me for any other type of pain I may incur in my days to come.
For the last five and a half years, I have taken the same dose in the morning and the same dose at night. I have never abused my medication but am being treated like a criminal when all I need to do is love my family and friends, run my business successfully, and live a productive life.
Hi. I’m 38 years old and recently had a major stroke. During the countless MRIs and CT scans they have also found a RCA aneurysm. Since my stroke I have had the worst pain in my head that has kept me from doing daily activities even simply sleeping. I have gone to specialists and nobody will take my pain seriously. When I just ask for something to take once a day just so I can sleep and function I’m treated like a druggie. I need help. I don’t know how to live like this. I have jumped through all the hoops and been prescribed so many different medications to no avail. I’m losing hope. I can’t live like this. When I tell the doctors this they say I need to seek therapy or even lose weight! I can’t sleep I’m literally drained. I’m in Portland Oregon and if anybody knows where I can possibly get some help I would be forever grateful.
I am 74 years old and have lived with pain since I was 14 years old. My pain started when I was 14 years old. I injured my back in gym class. My parents took me to the doctor and I had to wear a back brace for over a year. The thing was so uncomfortable I finally took it off. I have struggled through life for many years, in and out of hospitals. I have had pelvic traction and leg traction, many steroid injections, blocks, etc. Nothing would relieve the pain until I found my husband’s doctor.
He was very compassionate and realized nothing worked. He finally put me on the pain medication that helped me a lot. I was on this medication for several years. When my health began to decline to the point I could hardly do the things I used to do, I tried to get help from various sources, and all were either too expensive or we made too much money. When my daughter found out she moved us to Florida. Even though I never liked Florida my husband and I felt that was our only choice. So leaving all our friends, church, and other things dear to us, we had to go. With our savings we bought a mobile home near the family so they would help take care of us. I had hoped to find a doctor right away but that did not happen.
When I did find a (so-called) pain management doctor, he lied to me three times and treated me like a criminal. Upon cutting me off I had withdrawals so bad I though I was dying. I wanted to die. I finally dumped him. A year later I found another pain management doctor and he realized I was in serious pain, but my daughter told him I was an addict because I had taken pain medication for so long. That doctor after hearing her story instead of mine, he cut me off.
I am now being treated like an addict or criminal. I cry every day from the pain. I have severe stenosis in my neck, with three herniated disks in my neck and four in my low back, and a right hip that I should have surgery on. They all agree I am in serious pain but refuse to give me anything, since my daughter said what she did. I am to the point I am praying God take me home, I am tired of being treated like a criminal, when all I want is relief from this pain so I can live a half way decent life. There is a lot more to this story but I don’t think there is room for it.
On Wednesday November 17th 2021 around 1:00 p.m. I was struck by a negligent driver while riding my bicycle. When the car hit me I was struck on the left-hand side. I didn’t suffer any life-threatening injuries thankfully but I am currently suffering through a severe knee injury. When I was brought to Aurora BayCare in Marinette Wisconsin by ambulance after being struck by a moving vehicle, the way I was treated was downright inhumane.
While they were wheeling me into the building they asked a couple of brief questions on the situation at hand but immediately asked for the “rainbow” which is a blood test that tests for every drug known to man. They didn’t ask how I was doing, they didn’t ask how I was feeling, they didn’t ask if I was in pain. But they were quick to run and attempt to take my blood for a drug test. They treated me like I was some junkie, just there looking for a fix, not caring that I couldn’t move my left leg, and I’m having severe pain still in my left lower back.
I was conscious throughout the entire visit. I asked the staff repeatedly for my cell phone because they refused to call my family and tell them what happened. Once I was finally able to obtain my phone from the fourth staff member I had to ask, she immediately started getting very snotty with me while treating me like I was attacking her because I said I need my phone to call my family since you won’t do it. She rolled her eyes and screamed that she didn’t have to put up with my attitude, walked away, and yelled for security as I’m laying there suffering.
Then they moved me to the x-ray room and had a college graduate and the x-ray technician bending and twisting and turning and pulling and yelling at me because I was screaming in pain. We had security come up into the x-ray room to watch me like I was doing something wrong. I have never been mistreated like that by anyone, especially somebody from the medical profession before.
After about an hour of being in the x-ray room being used as a guinea pig for the new college graduate, they put me back in the hallway and left me there for another hour. I kept telling them that I was hurting and I was in pain and the ER doctor finally comes around the corner, tells me that there’s no broken bones and that I wasn’t going to get pain medication for abrasions/scratches. He then told me that I needed to get up and leave the hospital.
I kept telling him I can’t move my leg, it’s my knee, and he just looked at me and says there’s nothing wrong with you, you need to take your paperwork and go. I told him again that I just got hit by a car, that I wasn’t trying to get drugs. I was still unable to move my left leg due to all of my pain being in my knee where you will not be able to pick up the injury on an x-ray.
The ER staff along with security then proceeded to pull me off my hospital bed and try to force me up on my feet, the whole time I’m screaming for them to stop because the pain was so severe.
They didn’t even want to give me anything to put on to cover myself after the EMTs cut all my clothes off.
They very reluctantly gave me a pair of crutches, force-dressed me, and escorted me out of the building. I understand that there are people out there that do abuse pain medication, but that shouldn’t mean that everybody should be punished. They treated me like I wasn’t worth anything, as if I was less than human.
The reason why I am writing this today is because there are so many more stories from my community coming from all levels of social status. The mistreatment and negligence that is being done by this hospital has been going on for as long as I can remember, and for years before that. The staff in this hospital does not care about human life. If you were to come up here and do some research and ask around, you will understand exactly what I’m trying to say.
This is a small community, therefore all the doctors and lawyers and cops and judges are very well associated with each other outside of their professions, and everybody knows how easily corruption starts within that kind of circle. We only have one hospital within a 60-mile radius, therefore the medical staff here knows they can basically do to and treat people however they want without repercussions and it has to stop.
My whole community (this includes Menominee Michigan which is directly over the bridge from Marinette Wisconsin) is suffering because of it. When asked, the majority of my community will tell you they will risk their lives and drive to Green Bay Wisconsin before going to the hospital here. Just in the last three days I have heard so many different testimonies of the negligence of Aurora healthcare, which was previously known as Bay Area Medical Center.
There’s a huge blanket of corruption surrounding this area, and the entire community is suffering because of it. I just want people to be aware. I want this to be brought to light because I want this to STOP for my hometown.
I am a very honest and outspoken human being and will never hesitate to stand up for what is right. I cannot stand to watch anybody suffer for any reason, so I will always be the first to make sure everybody’s okay and everybody’s treated fairly. I know we still have a shred of humanity left and I want to rebuild it.
Not just myself, but all of us as a community are suffering and we want it to end.
I will go to the street to procure illegal pain medication before I ever undergo another tortuous dental procedure that’s meant to be managed with ibuprofen. I’d rather be dead than ever feel that pain again and I hope every legislator who reads this, if any, gets to know that pain.
Thank you very much for sharing your story. I love your use of the word “inhumane” in describing the actions of others who had the opportunity to help when you were suffering. My goal is to find a fix the problems like these in communities throughout the United States, aiming to prevent others from the horrific experience you have described. I am sorry this happened to you. We need everyone to know what has happened so we can understand what needs to be done to fix the problem.
My wife has had four neck and back surgeries. Her prescription is barely enough to ease the pain. On days when the pain is greater than bearable she needs an extra dose. Then at the end of each month there is no bridge to help until the next doctor visit. This is a huge burden to our lives and a very painful way to live. The other issue we are forced to drive three hours to a pain management doctor because her primary doctor isn’t allowed to write her medicine prescription. This doctor visit is not covered as he isn’t in network. How is this allowed?
In 2008 to 2010 I was treated with many antibiotics for Lyme Disease. Ever since then my GI tract has been in extreme pain, every day, and it comes with headaches, and sometimes nausea, and a Peptic Ulcer was created. The only medications that have helped at all have been what are considered very light narcotics. The doctor who prescribed these to me retired, and I began looking for another doctor who could prescribe one of them to me.
In the mean time, unbeknownst to me, our DEA has made it almost impossible to get the pain relief that I need. I have called many doctors, including pain medicine doctors who have said that they would not prescribe it. While I have been looking for another doctor, I was prescribed a Biofilm Disruptor by an MD that essentially stripped the lining of my GI tract which caused burning pain on top of the other pain that I have. One MD has just given me a 30-day supply of the pain medication but refuses to give me any more.
I am trying very hard to find the help that I need. I am furious with the government’s policy that has created situation where I am suffering. I am not an addict or abuser, and I am a high functioning, well educated person. The government policy is putting me together with hard-core abusers, which is totally absurd and inhumane. The DEA is so upset by the deaths caused by heavy narcotics that they have shut off the entire supply line to people who need pain relief. I cannot say strongly enough how totally wrong this is and the policy must change!!
After years of testing and being poked and prodded because I couldn’t figure out why I am constantly exhausted and throbbing pain was running through my body. First lupus cells were found, and all my scans were showing swelling in my joints; I was diagnosed with fibromyalgia. I can’t take ibuprofin, Naprosyn, acetaminophen, physical therapy, shots in my joints (which put me in MUCH more pain), trying gabipentin, and every other anxiety and antidepressants under the sun – I am literally left to suffer. I feel like my life has been taken over. Doctors have left me unmedicated and in constant pain because they refuse opioids. I work from home and lose my focus, I can’t go for walks with my kids without my ankles and knees swelling. I’ve never cried so much in my life until recently.
I go to the ER for some kind of help and relief, they find out what I have, shoot me up with morphine and send me on my way as if I’m a druggy in for a fix. This whole “crisis” is becoming patient negligence. The addicts are still getting to their drugs no matter what doctors do. It makes me so angry because for someone like me who can responsibly take medication as directed by a physician gets treated horribly and neglected because of those who take advantage of these meds to get their high. I’m tired, I’m in a horrible amount of pain daily and I’m left untreated because of this, I get treated like someone looking for drugs for a high. Guess what? Just like any other medicine if you’re taking it the way you’re supposed to, those people aren’t running around high. Any meds take getting used to!
I am 42 years old and have been on pain meds for more than 10 years. When I was taking more than double what I take now, I had a full-time job and went out and had a life. Then the DEA decided I and others were “drug seeking junkies”, so now I [am given] less than half of my meds and do nothing and go nowhere. I HATE THESE [jerks] AND PRAY FOR THEIR PAINFUL, SLOW, and TEARY demise. [Get rid of] them all, God will know his own!!!
I am a 55 year old woman who is ready to give up on living like they want me to. I have scoliosis that was never diagnosed as a child. I worked 30 plus years as a nurse then a nurse practitioner in pain. In 2017 I had to quit working. I had a L4, L5, S1 spinal fusion (after several years of ineffective procedures including two nerve ablations) that did NOT relieve my pain. I also have PTSD with severe anxiety.
Not only have my medications been slowly decreased since 2016 but I was reported to the Board of Nursing and investigated because I was in pain management on opioids. That was humiliating but the complaint was dismissed without even a single hearing, but it was costly financially and emotionally. I am not only forced to endure severe daily pain but was instructed to immediately discontinue my benzodiazepine that I had been on for many years. I suffered a seizure for abruptly discontinuing that drug. We are forced to choose between treating pain or anxiety. I exist, I do not live. I am exhausted from hurting, having panic attacks and not sleeping. My doctors say their hands are tied. I am hopeless.
Since March 21, 1999 I have survived with severe pain in my chest like a knife stabbed under my left ribs. I awoke in recovery after simple laparoscopic surgery to resolve Heyerdahl hernia and lifelong acid indigestion. Several esophageal ulcers and bleeds preceded this solution. Unfortunately the surgery suffered a failure which caused my stomach to press on the vagus nerve causing the pain.
This was not discovered until late in 1999 and trans-thoracic surgery was required to repair. Scar tissue continues to press on the nerve causing severe pain. Managed to remain a productive worker with daily use of narcotics to control pain. Since meds were cut off have become disabled, depressed, and unable to function. I want some quality of life back.
I have needed and must take prescription pain medication for twenty years now, the search for medication was not a short one. My doctor faithfully worked to find a medication that would allow me to finally get off my couch (a pain restriction) and not only get off my couch but to find a job and perform it at (non-medication dependent) person quality.
Pain is not always an easy thing to verify. However, I was given three EMG tests over a three year period and all three were identical. I have a severe ridiculopathy affecting my lower back and legs. An EMG test cannot be faked as it uses a small amount of electricity to follow nerve pathways. My results were off the charts.
I can no longer get the medicine I need to exist. I am taking a different medication now and it does dull the razor-sharp pain signals but does not work anywhere near what the correct medication did. My doctors agree I do need that medication, but due to no insurance company covering the right one and I can’t afford to purchase it. And with the current medication, they are now trying to limit one of my daily doses despite my doctor stating I need the dose that I am currently taking.
I am tired of the government telling the doctors that I should be under some number made up to accomplish their end. I am barely living any type of life now but I am not going to be trapped by pain so I will leave to end the pain. This is no cry but a final decision I have come to, being of sound mind and decaying body. I only see disaster coming as they push even harder to deny people that medically need a medication.
I have never parted with any of my meds and have been urine tested for over 15 years with not even a single negative finding. I want to follow the law and I will not buy anything illegal. Instead, I will do what I must to escape this life of excruciating pain. I can only imagine how many other law-abiding people are being denied the help that does exist, in the same or even worse than my situation. I wish you all luck and strength to continue to fight against this incredibly invasive law structure and end their ability to deny good people the medicine they medically need.