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 do not appear right away.
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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 do not appear right away.
I have broken Harrington rods in my back. I was a passenger in a car wreck 43 years ago that broke my back.
It was 1977 and there were no laws to make you wear seatbelts back then. But because she was a new driver I jokingly put my seatbelt on. The ambulance driver said if I didn’t have that seatbelt on, my head would have gone through the windshield and my head would have hit a tree because of the way we hit. He said I had angels around me.
But it’s 43 years later and I wonder where those angels have been lately? Especially since the opioid crisis.
I’ve literally had pain every day since that wreck. But 23 years ago I noticed the pain was different and much worse. I thought I had just done too much, or was having a bad day. Cut to two months later when my husband found me mopping the floor and crying. I told him of my back pain and he took me to urgent care.
The doctor was shocked. It looked like the Harrington rods and nuts/bolts had just been thrown around in my back. The rods had broken away from their original placement. After getting four second opinions, surgeons said surgery would leave me in worse shape because nerves and scar tissue had grown around the hardware.
One of the best (supposedly) surgeons said he would basically have to dig through bone to get foreign objects out of my body.
But I’ll NEVER EVER forget the first day I had the fentanyl patch on 21 years ago. Four to six hours after application I was out to dinner with a relative. When I saw the chairs we would be sitting in were wood, I got aggravated. I knew my already painful back and buttocks would be super duper sore because of no cushioning on the seat.
About thirty minutes into the meal, I started to cry! My cousin asked what was wrong? You see… I never cry much.
I was sobbing because I realized my back DIDN’T hurt for the first time since I was 16 and before the wreck happened!
I’ll never forget the ride home. I wanted to roll the window down and yell to other cars and people on the streets, “My back doesn’t hurt as bad!” And I’m not kidding nor exaggerating!
Cut to about three years ago in 2017 when my pain doctor of ten years told me he was going to wean me off the fentanyl patch because he thinks eventually they were going to make fentanyl available only after surgeries.
I NEVER failed a urine test, nor a random patch count. But because some people abuse drugs AND apparently the FDA and our government doesn’t realize the difference between fentanyl from China and the fentanyl from CVS … my pain is NEVER lower than a 6. And that’s a good day!
I wish you could see a pictur of me before I was taken off the patch and a few months off the patch. I aged ten years! And you don’t have to be a doctor to look at me and realize I’m in pain.
And in my back x-ray you can literally see the metal hardware strewn around my spine. Nuts/bolts laying admist my central nervous system. And the medical field doesn’t think/realize I need anything to help me tolerate the pain? Are you kidding?
I just can’t imagine what people that have injuries you CAN’T see in an x-ray or MRI go through. Because I was called a drug seeker in December of 2018 AFTER I had been in a coma at Mercy West Hospital in Cincinnati Ohio for four to five weeks… I’d been laying in one of those “plush” hospital beds all that time and when I had finally “come around” I had asked twice for my pain meds in a three-hour time frame.
I just thought they forgot about me. A nurse’s aide said to me in a VERY nasty humiliating manner, “LADY!!! If you ask for pain meds once again we’re going to HAVE TO label you a drug seeker! We are running on a short staff tonight!”
I should have asked if I only would be charged half price since the hospital wasn’t able to take full care of me…
Plus… if you only knew how much I hate illicit drugs… and the reason why… you’d better understand why I DESPISE even needing to be on narcotics, and now I’ve had to go on medical marijuana because I’ll literally do ANYTHING just to have a TOLERABLE pain level.
I’ve learned I’ll never be pain free.
Here I am 60 years old and the drugs I stayed away from my entire life I have to be on just to thrive through another day…
And I promise if it wasn’t for my strong religious beliefs and the fact my husband has tried so hard to keep me alive, I prbly would do suicide.
But for now, I just pray every single night that God doesn’t make me wake up tomorrow.
How could this be changed?
I don’t know but I would love to be put back on the fentanyl patch. Maybe even that won’t help after all these years of going to bed knowing I won’t feel better tomorrow… has finally taken it’s toll on me.
I know this for sure… I have absolutely no hope for my future. I have nothing to look forward to because I’m 60… I’m only going to get worse… and probably so are the opioid crisis rules.
The only thing that I have to live for is to see my only grandson graduate and go into the Air Force. He’s wanted to do this since he was three or four. BUT… I probably won’t even be able to attend the graduation.
I have to think (and worry) about the ride there and what if my husband hits a pothole which increases my pain. I have to think about how many possibly slippery steps will be in the auditorium. What if my pain skyrockets and I have to throw up? Or have a seizure. Because both have happened MANY times. The medical field seldom believes me when I tell them I get seizures from pain.
I’ve started to cry as I write this.
Mostly because I feel like I just probably wasted another hour of my pitiful life. Because I’m an idiot for thinking anyone who could help me… will.
Not many people have in the 43 years I’ve had chronic pain. But if you even made it to this point… thank you. And I’m pretty much open to ANY suggestions.
We found out, by mail, Friday, that our long-time physician has unexpectedly taken a leave of absence. Since he is very close to our age (60’s), we do not expect him to come back from that leave. This is extremely upsetting, because he understood my husband’s pain (hit by a truck at 15, blew out his hip, knee and ankle. Extreme pain that makes even washing the dishes impossible). My own pain is from not one, but two shoulders that have no cartilage, bone upon bone and extremely limited mobility. And no physician wants to provide prescriptions anymore.
What the loss of our physician will do, is make it impossible for either of us to get through a day. It will mean we will have to sell our nine-acre property and probably move into a condo. It will totally change our lives.
We have never gotten “high” or any particular pleasure from the medication that we take. What it has given us is a quality of life that reduced the extreme pain to manageable limits.
I went to OHSU because I thought that having one ‘location’ managing my health might be a good thing. The physician I saw IMMEDIATELY made this statement: We need to get you off the medication. She had met with me for ten minutes. She had no idea that I had previously been working a job where eight hours a day I was moving very heavy dollies of product, where I was lifting cases of milk that weighed over 80 pounds, and only because I was able to mask the pain.
The mere mention of pain medication and they want us to see a ‘pain clinic’. We have done that three times, always the answer is … meditation, PT, yoga, aspirin… never anything useful or sustainable.
I was injured at work. For two years my doctor blew me off and labeled me a seeker. I finally convinced him after a very heated argument to do a discogram on my back. I had a severe Annular tear, and some less severe symptoms with my other disc. I had fluid leaking into my spinal nerves, which explained a lot of the reasons for my pain and weird symptoms. I had an Alif/Plif spinal fusion done. I have a plate and four screws to keep my new bone graft in place. I wasn’t even in the hospital for 24 hours before I was discharged. The nurse told me to take a muscle relaxer, that my pain couldn’t be that bad. I’ve tried discussing my pain management with my doctor, but he threatened to hang up on me and told me his terms were not negotiable. I’m two months post-op. They’ve started tapering my medications to the point of it being a joke. I’m now on Percocet and Flexeril every 8 hours and he just cut my Gabapentin dosage in half yesterday. I’ve discussed my nerve pain with him and I really think he did it out of spite, because I was “arguing“ and advocating for myself. I cried so hard yesterday and still am, as I type this. I can’t take the pain, I have kids and in no way am I a functioning adult. I’m in bed most of the time, every time I try to do something normal, a simple task, I’m not able to. It’s devastating to lose your life then have someone decide your pain doesn’t matter. I’ve thought of giving up, what’s the value of life if you can’t live one? My doctor said he would suggest a pain management clinic if that would make me happy. I don’t even know what to expect from them. I’ve never had to deal with this before. Is it a good thing or will I be in the same boat, drowning? I’m so devastated by his lack of empathy, I thought I could trust him to take care of me. Now that he’s made his money from my surgery it seems like I’m just someone to push out the door to get the next person in. Why do doctors lack empathy? You can see I’m hurting, you literally know what’s wrong with me, that it’s not phantom symptoms. So why be so cruel and let me suffer?
I have been on an effective, responsible pain med prescription for 10 years and accepted the dependence rather than suffer with Siatica. I’m a 63 year old heavy equipment operator with a vigorous job for the US Fish and Wildlife Service. Now because of these powerful, ignorant, greedy morons, I was cut off abruptly, then finally put on an insufficient low dose of medication. The catch is I cannot risk having an operation because if they end up causing me more pain, they’re going to cite the CDC and DEA asshole’s limits and say sorry for the inconvenience! And I always asked myself, How is making me suffer daily helping a supposed opioid crisis? It is purely driven by lazy, ignorant government agencies who actually think they’re making a difference, despite evidence that they’ve done nothing but cause harm to the Americans that employ them. We’ve given these morons unchecked power to make much too important decisions. And don’t politicize this truth. We truly need to get real, intelligent doctors in charge, not these government baboons. I’m talking people like Josh Bloom. The people and their advisors in power now are purely motivated by money and prejudice against meds and pharmacy and have set modern medicine back into the dark ages, causing pain and suffering needlessly.
I am 60 years old. I have been on my pain medications most of my life. One day I was told they could not prescribe pain medication anymore, that I needed to see a pain management doctor. That was a disaster because at the appointment you were questioned, belittled and treated like a seeker/addict. If you made it through that without crying or getting mad then you could have two weeks’ worth of medicine. I believe that was your reward for tolerating their rudeness.
So I am currently only taking one medication for pain. I have been diagnosed with MS, hip fracture, sciatica, severe osteoarthritis from the top of my head to the bottom of my feet, a very painful foot that has become infused because of doctors’ neglect. They kept telling me for a year my foot was not broken. Come to find out with an MRI it was, but healed and infused causing no movement in my foot, severe gastroparesis that caused me to have a JG tube that I will be on for the rest of my life and is very painful. The stomach acid eats your skin up. Spinal stenosis, bulging disk in my neck and lower back and cyst on my brain that is still there to this day.
In 2001 I was hurt at work; got my left hand caught in a machine where I needed immediate surgery to put my hand back together. After all these years I’ve been on pain meds, now they cut my dose to 5 and that’s all they’ll give me. They try any injections but I’m allergic to it so now I’m a “problem patient”.
As a retired RN, I have dealt with pain and opioid relief of it as both a caregiver and as a patient. I first came into contact with the US legal system way back when I was 16, and when I went with two high school friends down to Mexico simply out of a desire to see what another country looked like. Little did I know, until we were stopped going back into the US, that the owner of the car had stashed pot in it way back upon when we first set out from Dallas. Luckily for me, the Border Patrol people realized I was telling the truth about the numbskulls I was travelling with, and what they had done. I was released as they continued to process my two companions for possibly being drug traffickers.
During my career as a practicing RN, I routinely distributed narcotics to my patients, monitoring them, and often informing doctors when the medication dosage was not sufficient or when there was blatant individual recreational use of it, as opposed to use for medical reasons. After all I was with these patients much more than the doctors were. I was able to observe and learn, and did so.
These days though, I now confront doctors as a patient in an uncaring medical system that has allowed its practitioners to function more as drug war cops than as though they were compassionate fellow human beings concerned with the welfare of the people they are charged with providing medical care to. Medical practitioner after medical practitioner now turns their collective backs on me and other patients, when all we want is for them to practice good and reasonable medicine and nursing care, which is to provide relief from needless and toxic pain to the elderly and sick.
I will stop here other than to mention that this is a worldwide problem we face, and not just one confined to US national boundaries. Worldwide, literally billions of people are now being denied when it is needed, adequate analgesia that works, all this due to prohibitionist conservative religious institutions, rigid authoritarian governments, and the policing organizations that get funded for their drug war measures of arresting, jailing, and convicting drug users whose lives and families are most often torn up.
I favor all efforts to legally move forward by publicizing the problem to those who are most usually propagandized to use repression against those they often condemn as supposedly being ‘Others’. The best way to do this is to initiate malpractice lawsuits against the political and policing regulators, the cowardly medical practitioners who refuse to practice good medicine, and all those other people who spread false disinformation about those who look for obtaining pain relief when needed. If I and others go to a doctor and they refuse to offer us adequate treatment for our medically related pain, then let them be sued in court en masse. That should be their just reward for their criminal disregard of those in need: prosecution and large fines. I suggest suing the CDC (the US government) first of all, since under reactionary political direction they have been currently botching medical care in multiple ways and with multiple medical issues.
Please send me info about all legal efforts to sue those who block our access to getting adequate analgesia. And PLEASE help start a movement to protest the CDC. They do not promote science based medicine at all.
I have been on pain management for almost 18 years. I have severe osteoarthritis, degenerative disc disease, degenerative joint disease, spondylolisthesis (from several fractured vertebrae that went unnoticed), bulging and ruptured discs in my cervical and lumbar spine. I also have an umbilical hernia that pops out causing me pain as well as poly cystic ovarian disease and uterine fibroids (all secondary to the other issues). I’ve had a botched hip replacement and need the other hip and left knee replaced.
In 2016 my doctor began titrating my medication at every monthly visit. I didn’t argue but was apprehensive. When I asked her questions about alternatives and how to cope with the pain she started using terms like ‘opiate use disorder’, psychological pain from trauma, and accused me of being uncooperative. I couldn’t believe it! I had been seeing this medical provider every 28 days for nearly 20 years, she knew me, my condition, and that I had always been a model patient, followed all medical advice, with no addiction or criminal history, never failed a drug test or doctor shopped, or visited the ER, yet I was being treated like a drug seeker. Eventually my medication was cut to 20 mg a day. I’ve tried everything from acupuncture to eye movement therapy to Radio Frequency Ablation.
Since then my physical health has degraded dramatically. I’ve gained nearly 50 pounds, my blood pressure, heart rate, and blood sugar levels have dramatically increased. My joints have dramatically degraded, my hair is falling out, my teeth are worn down and breaking from clenching and grinding unknowingly. I’ve aged twenty years in the last five. In the last six weeks I’ve fallen three times because I am so locked up with pain.
A year ago I was finally able to see a pain doctor who prescribed low doses of opiate medication after a bupinorphine drug made me deathly ill and several attempts at radio frequency ablation failed. When I tell him my pain is still unbearable he suggests that maybe I should just use Tylenol and Ibuprofen alone, because opiates have probably been the cause for my pain in the long run. Message received: grin and bear it, suck it up and shut up, be grateful for what you get because you might end up getting nothing. Which brings me to my next point: if I risk losing what I get now how bad would it be if I actually had enough medication to manage the pain and lost it?
I’m tired of the pain, sick of the shame, and afraid to complain. The future for people in pain is bleak. Alternative therapies are insufficient and not covered by insurance. The stigma of pain and bias against opiates is demoralizing, unfair and difficult to accept. The bureaucrats are punishing the people most vulnerable, forcing them to suffer, stealing the life force from people who still want to contribute to the world. The worst part is they’ve done nothing to fix the problem that caused the addiction and overdose crisis, they’ve only created another crisis.
This has to stop! Human nature dictates an imperative to survive and escape torture, laws and guidelines won’t change that, they will only drive people to seek and create other avenues to relieve it outside the law.
My story: just know four PM docs since 2016 have ruined my reputation, you can not charge them, no doctors will admit or testify against the other. Never tried to help me, knew I could not take any more dextromethazone injections, led to adrenal disease. But that’s where they make their money honey. I am not considered because not profitable for them.
Past 20 years diagnosed with IPD. Though getting appropriate extended release opioid (never increased) kept getting injections hoping I could be normal again. Never worked.
THE OPIOID PROBLEM
I’ve been on prescribed opioid/opiates (“opiates” are derived from organic substances, whereas “opioids” are synthetic, man-made chemicals that have similar properties / the terms are commonly used interchangably and I will do so here) to treat chronic pain for decades. During this period I have been prescribed almost every form of painkiller known to man. Pain management doctors all require a signed “Opioid Contract” wherein patients promise to comply with their treatment directives and not abuse, divert, or hoard the prescribed substances or use other drugs and/or alcohol. Non-compliance will result in termination of treatment. Most doctors told me they had a “zero tolerance” policy for violation, meaning that you will be cut off for minor reasons like drinking beer or using medical marijuana.
Only a few doctors I have treated with, of rare competence and understanding, recognized that a patient could benefit from medical marijuana and in fact reduce the amount of opioid use thereby. Unfortunately, 95% of pain management doctors will not treat medical marijuana users at all. They say that “there is no scientific proof that marijuana relieves pain”. Really? What about the testimonials of millions of Americans and the findings of the Arizona Department of Health (and the health departments of 31 American states). Even the federal courts have acknowledged that marijuana can “alleviate excruciating pain”. Raich v. Gonzales (9th Cir. 2007). If the patient believes that marijuana relieves their pain what is the harm? There is not a single case of a fatal overdose from marijuana use, even when used with opioids. When it comes to marijuana most doctors close their minds and increase the opiate dose.
When I first began using prescribed opioids the doctors handed out prescriptions for these substances as though they were handing out candy to children on Halloween. At one point I was receiving huge doses of morphine, along with sleep aids (Ambian) and sedatives (Valium). Dependence/addiction was almost never discussed. Now, because of the fear engendered by the opioid crisis it is extremely difficult for those patients who need these drugs for real pain to get treatment. Those who do are treated with suspicion and subject to monitoring similar to a criminal offender on probation, including urinalysis testing. The patient’s words are no longer trusted regardless of their history of compliance.
I have always complied and have never abused the substances prescribed. Contrary to what many believe, most chronic pain patients responsibly use prescribed opioids and their quality of life is greatly improved by them. The vast majority of overdoses do not involve those who use prescribed opoids for treatment.
Opiates have been used to treat pain for over 150 years. They are addictive substances which produce euphoria in most, but not all, users and are subject to abuse. Any competent doctor knows this. They have known this at least since morphine appeared on the shelves of drug stores in America over a century ago. We now hear doctors claiming that the drug companies somehow fooled them into believing that synthetic opioids, which have essentially the same chemical structure as opiates, were non-addictive, and that they were ineffective doctors for not prescribing them freely to combat their patients’ pain. They blame the drug companies for their own malpractice.
Everything seemed fine until former patients began overdosing and dying in huge numbers. Doctors became frightened and concerned about malpractice and began cutting off the prescriptions and terminating treatment altogether, knowing that withdrawal would follow. This is the day that all chronic pain patients fear the most – the day they are cut off. Opioid withdrawal is a horrible thing. I have seen it many times in family members and others during the past decades. It can only be described as the worst sickness one could ever experience. The doctors, however, didn’t seem to care what happened to their former patients because they were no longer the doctors’ responsibility. That’s exactly what caused the opioid crisis.
The snowball began rolling down the hill and the problem grew. More and more opioid-dependent patients were being “cut off” from treatment and left with nothing but “dope sickness”. They then turn to street drugs, opioids diverted from the medical system and/or heroin, which is readily available and relatively cheap. The vast majority of opioid overdose deaths are those of former patients who began with a legitimate doctor’s prescription. The equation is simple: Doctor (over)prescribes opioids to patient + doctor terminates treatment + patient suffers withdrawal + patient seeks drugs on street to combat withdrawal = patient dies from overdose, goes to prison and/or loses everything. Unfortunately, the medical profession could not “do the math”.
I place responsibility for the opioid crisis directly with the medical profession. It is a doctor’s job to treat patients, particularly when the patient has been put in a vulnerable position by their “treatment”. To simply cut off an opioid dependent/addicted (doctors make a distinction between “dependence” and “addiction” which is really one of semantics only) patient without also treating their dependence is absolutely absurd and irresponsible and, in my opinion, malpractice (the lawyers say it’s not malpractice if most doctors do it, as this establishes a “standard of care”). The treatment needs to be immediate and thorough. There are a variety of ways to do this, however, doctors have the problem of being too specialized. The practitioners who prescribed opiates/opioids say they are not addiction specialists and that is the responsibility of another specialist. They send the patient out of the office with a name and phone number of another doctor who may not be available for weeks, during which time the patient will suffer. All that claim results in is dead former patients.
Pain management doctors should never have a “zero tolerance” policy with regard to compliance with their Opioid Contracts and, when they see a problem with abuse, help the patient to resolve it by slowly reducing doses and, as a last resort arrange appropriate immediate interventional treatment. All chronic pain long-term opioid patients should be prescribed the drug Naloxone and their families counseled on when and how to use it. Naloxone immediately stops the effect of opioids and saves lives in the event of overdose. If nothing more, it lets patients and family know the seriousness of the opioid treatment regimen. Finally, doctors should keep an open mind when it comes to medical marijuana as an alternative, or partial alternative to opioids for pain relief.
As a final comment, something needs to be said about opioid addiction treatment. Heroin was once touted by drug companies as a cure for morphine addiction. Then methadone was a drug for treatment of heroin addiction. Now buprephenorphine is being prescribed for opioid addiction. All of these drugs are subject to abuse and can be bought on the “street”. Buprenorphine is an opioid that is 30 times more potent than morphine. Giving people another substitute opiate to “cure” opioid addiction doesn’t make sense to me. People are just dependent on another drug. Heaven help them if they are ever “cut off”. The goal should be to slowly reduce dosages until they are free of the dependency. That is the only way to stop the snowball from rolling.
I hope that doctors will open their minds and understanding of these issues as they are so important to those of us who suffer daily from pain. There are good doctors out there but they are rare.
Anonymous