Thanks to rampant opioid abuse, chronic pain sufferers face increased scrutiny and hassle when their doctors prescribe them narcotic medications for their pain. Five years ago, my doctor would write me a prescription for Vicodin with two refills. My Tramadol prescription had five refills. Today? I am treated like a drug addict, not because my doctor wants to treat me this way, but because state and federal law requires him to do so. Here’s what’s required today for me to get my pain meds:
- I must see the doctor every two to three months at a cost of $175 per visit.
- The script cannot be electronically submitted. The doctor must give me the scripts to take to the pharmacy.
- The script cannot have any refills. This necessitates the doctor writing and giving me two or three scripts at a time.
- The script must list what I am be prescribed the medications for.
- The doctor must write the fill date on the script.
- The doctor is required to fill out an opioid load report on me.
- I am required to sign an annual pain management agreement that says my doctor can drug test me at any time without warning.
After I receive the script:
- I have fourteen days to fill the prescription, from the fill date written on the script by the doctor.
- In the case of refills, I can only fill the prescriptions twenty-four hours before they are due to be refilled.
Zeus help you if you lose a script or try to fill your prescription a day too early. You are immediately treated like a criminal. Today, Polly went to the Meijer pharmacy to have my prescriptions filled. The pharmacist and one of the techs had a discussion about whether I was trying to refill my Vicodin prescription too soon. The pharmacy tech had to explain to the pharmacists how to count to one. Worse yet, I didn’t know that the fourteen-day rule applied to Tramadol. It does, and because my doctor listed January 28, 2018 as the fill date, the pharmacist said the script was invalid and he refused to fill it (nor did he make any attempt to call the doctor to get the date straightened out).
I get it, people are dying from opioid addiction (primarily from Fentanyl use), but law-abiding chronic pain sufferers are facing increased indignities as government and law enforcement take a one-size-fits-all approach to illegal narcotic use.
A report posted today by KETV-7 aptly describes what many chronic pain sufferers are going through to get their pain medications. Reporter Rob McCartney writes:
But some say that war creates collateral damage, innocent victims who rely on those opioids to keep their chronic pain at bay.
Joni Pilmaier is one of those patients.
Her entire spine is covered with titanium rods and screws.
She had major surgery ten years ago, for scoliosis and osteoarthritis.
“I was hoping after I wouldn’t have any pain, but that big of surgery it’s not that surprising I guess,” said Pilmaier.
But a decade later she is still dealing with chronic pain.
The former occupational therapist tried physical therapy, spinal injections and bio-feedback.
The best relief though came from opioid treatment.
That medication helps Pilmaier just get out of bed and function at a minimal level.
When asked what she would do if she was forced to give up the drugs, Pilmaier said, “I don’t know. I’m not sure what would happen.”
But a lot of chronic pain patients have to face that very decision right now.
In trying to stem a flow of opioid overdoses, in 2016 the Centers for Disease Control released these Opioid Guidelines for doctors..
The CDC recommends a daily limit of 90-morphine milligrams (MME).
That would be a severe cutback for many patients.
Omaha doctor Kurt Gold prefers using a non-opioid methods [sic] like exercise to treat his pain patients. But he tells me about half of them can’t be helped that way because of painful, permanent nerve damage.
“In those cases I think opiates would be appropriate for them to continue so that they can function,” said Gold.
….
“In Nebraska, the suicides are going up. And as of 2016 we surpassed the national average for suicides per capita. That’s a problem,” said Gold.
The problem is caused by chronic pain patients who see their long-time access to medications reduced or even eliminated.
They think there’s no way out, preferring to end their pain forever.
“In my current practice I’m aware of seven patients that are suicidal. Seven people are on the brink,” worries Gold.
The State of Nebraska said it doesn’t track of why people commit suicide, but The Kim Foundation, an Omaha-based mental health and suicide support group, told me they do hear of that happening.
Pilmaier stresses she is not going to go to that extreme.
But she does see the desperation across the country, as she monitors several chronic pain chat rooms.
“Everybody’s extremely ticked-off at what’s going on,” Pilmaier said, “Some are saying, “Oh my God, what if it happens to me?””
Many pain patients, like Pilmaier, agree the government should go after people who are “gaming the system”. People who illegally obtain prescription painkillers.
But she says politicians should not tell doctors how to do their jobs, nor should they discount what many people will live with the rest of their lives.
“You need to walk a day in my shoes. You don’t know what it feels like to have pain every day, to wake up in pain, to go to sleep in pain. And to be in a climate where the only thing that helps your pain is being taken away from you…,” Pilmaier said shaking her head.
….
Jerry Mitchell, a reporter for the Clarion Ledger, writes:
Many chronic pain patients, who don’t suffer from cancer or other fatal diseases, worry they will become the casualties in the battle against the opioid epidemic.
“It’s like a war on chronic pain patients,” said Jaqueline Schneider, a 56-year-old Pittsburgh woman who suffers from two rare spine diseases. “Nobody mentions legitimate pain patients. It’s like we have the plague.”
She calls what is happening now “opioid hysteria,” saying the federal government’s “overzealous tactics … are creating fear in the chronic pain community.”
Many doctors and pharmacists fear they may become targets and are limiting the opioids they prescribe or distribute, she said. “It’s all trickling down.”
She is hardly alone in those fears.
Dennis Ewing Sr., a 61-year-old disabled printer in San Antonio, takes the equivalent of 135 mg of morphine a day for his intense spinal pain.
The U.S. Centers for Disease Control and Prevention has recommended health care providers prescribe no more than a 90 mg morphine equivalent and justify it whenever they go beyond that amount.
If reduced to that limit, “I wouldn’t be functional at all,” Ewing said, adding that he fears he might commit suicide in that case. “It scares the hell out of me.”
He has already changed pain doctors because the previous one took away his longtime prescription for muscle relaxers, which are the only way he can sleep, he said.
He knows he is physically dependent on opioids and would encounter withdrawal if he went off the drug, “but I’m not an addict,” he said. “I’ve been fighting this pain since the 1990s.”
I have lived in persistent chronic pain for 17 years. My body chemistry has physically changed to believe that pain is normal. I’ve gone through every test and every diagnostic procedure imaginable, and pursued every treatment available to me. I’ve repeated treatment options countless times hoping many of them will one day bring relief. I have adjusted my lifestyle countless times, changed my diet countless times, incorporated methods of healing from other cultures, pulled from all resources in Eastern and Western medicine and beyond.
I remain in constant pain, despite all my efforts. This abnormality is my normal, 24 hours a day, 365 days a year.
There are millions of people in this country alone who struggle with chronic pain every day, just like me. Chronic pain conditions are notoriously misunderstood and misdiagnosed.
For 17 years, I have taken painkillers to help manage my pain. I don’t take them every day. I don’t rely on them as a solution to a never-ending problem or view them as a cure. I take painkillers when I literally think about throwing myself into a wall because being unconscious is preferable to being in that much pain.
Yes, it is that extreme, because taking painkillers has never been a casual decision, for me or for my doctors (past and present) that prescribe them to me. Doctors shouldn’t prescribe painkillers unless they are absolutely, medically necessary and patients shouldn’t be reckless about taking them.
The uncomfortable truth that no one wants to talk about is some patients need painkillers to survive. Yes, need. This is not debatable. This is not politics. But myself and patients like me are severely punished in this war on opioid addiction. We are the people whose quality of life will be greatly affected, even though we have done nothing wrong and have taken our medication as directed. We are the people who are constantly shamed, every day, for this reality we live in and cannot change. And we are the last people who should apologize for needing this legitimate medical treatment.
….
Many people living with chronic pain conditions already live with constant guilt about their circumstances. The shame and stigma I have encountered living with a chronic pain has driven me to hide it from the world. It is only recently I have begun to speak openly about the side of my life I never let anyone see. Early on, my honesty was met with hostility and rejection. People don’t understand what they cannot see.
I chose to live a life that includes more than being a professional patient with four doctor appointments a month. But this choice comes with the price of being misunderstood even more. The daily physical and emotional struggles I have are enough. I don’t need government officials completely destroying the quality of life I have come to know with medication.
In an effort to save the lives of people who abuse prescription drugs or become addicted to illegal drugs, this “war on opioids” is setting up a medical system that will only bring misery to patients who are not addicted to drugs and in genuine need of painkillers. My rights and my fellow chronic pain patients’ rights are on the line. When you live in constant physical pain and you find something that provides you with any kind of relief, it cannot and should not be taken away.
Chronic pain sufferers are low-hanging fruit; easy targets for the DEA and state law enforcement as they wage war against drug addiction. Quite frankly, I am tired of being a target. But what other choices do I have? Without pain medications I would be dead, murdered by my own hands. The drugs I take provide me a respite from pain. Narcotics don’t make the pain go away, but they do lessen the pain and smooth out (on most days) spikes in pain levels. Is it too much to ask that, in the midst of my suffering, I not be harassed and shamed by medical professionals, pharmacists, and government officials?
Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and sixteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
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Preach the gospel, brother!
I’m so sorry you have to go through this, as well.
Years ago, my doctor wrote me a gigantic bottle of V with no thought at all; now, with 2 cracked teeth & recovering from surgery, I have to go through hell itself just to get 10 pills. It’s unreal
So. I also suffer from constant pain, 24/7/365. What helps me for my daily pain is Gabapentin and cyclobenzaprine (Flexeril). I’m seeing my rheumatologist soon and I’m going to ask to have the Gabapentin upped, as the dose is significant but not huge.
I do have Tramadol and it seems to help more if I have a pain spike, and the synergy between the 3 drugs can help. BUT–I am now facing a hassle from the insurance company and my rheumatologist now has to justify prescribing it.
Here’s the reason I’m not just signing my name (although Bruce knows who I am): I also take a legal herbal painkiller called Kratom. Right now the DEA is trying to get it moved to Schedule One and curtail its use. Quite frankly, I prefer it to Tramadol. And I only use it as necessary. I can go weeks, sometimes a couple months without needing it. But I woke up this morning with a very painful neck, and I took 2 capsules of Kratom. That was enough to take away the pain AND make me feel all right.
Still, I think my favorite prescription pain killer was Darvocet. I would take one small dose before bed, get a better sleep, and things would improve the next day. Of course it was taken off the market. Seems like things that I take in small doses like that keep getting removed, usually when people are abusing drugs.
Still, I’m actually waiting for Ohio to get it medical marijuana infrastructure set up. Even if I didn’t use it, I’m related to someone who could probably benefit. And it’s possible the marijuana would help people who are in severe
I found Darvocet helpful too. Too bad it caused heart problems. 🙂
I was looking at an old recommendation after it was taken off the market. The medical author was recommending Percocet as a substitute. The only time I’ve been allowed to take it was after surgery. That stuff caused me dependence after taking it one or 2 weeks. I wasn’t addicted because I ran out and never took it again, but didn’t sleep for 3 days hardly. After 2 days I wondered and checked. Lo and behold, having it abruptly run out was the cause.
They have made Gabapentin a scheduled drug now we have to suffer even more, we are no longer a Republic we are communist where the state rules every aspect of our miserable lives, I can’t wait to die. But that’s the plan the reason for hospice is to get rid of old wore-out people that’s worked all their lives and get them off social security, and as Obama said just give them something for pain and let them go. Does anyone-else see whats happening, I don’t think so. I quit pain managment because they cut me back to where it no longer worked, now I’m wheelchair bound in pain 24/7 haven’t been anywhere but the Dr. in year.
Damn. Holy Shit. You people are so much tougher than me. I suppose it is in such circumstances that you learn just how precious life is, and you find reasons and ways to keep hanging on, but reading your stories I can’t help but think I couldn’t handle it. You have my admiration, for all that’s worth. Thoughts and prayers, thoughts and prayers…
Thanks, Mark.
Daily pain, but the medical marajuana kills it pretty effectively and keeps my asthma in check pretty handily. I know what a struggle it is with those stupid scripts for pain meds. they used to give those things out like M&Ms, now you stand a better change of getting plutonium. Target once tried to claim I was ‘abusing drugs’ when I was having pretty severe asthma attacks daily, in and out of the ER. One of the worst parts of the severe attacks is when they are over you’ll have a pretty mighty panic attack that you must have something like Xanax or Ativan to turn off. They increased so badly one week that I ran through a 30 day supply of the mildest version of Ativan in that week. My doctor upped the dosage and sent me in with the new script. The pharmacist accused me of drug seeking behavior!! My damn doctor ended up coming down to the pharmacy and telling the pharmacist that I was no doper. I thought that the first rule of medicine was do no harm? Refusing to adequately treat pain, or other conditions fails that. Some folks need this stuff and aren’t dopeheads. The sad thing is we’re talking about dosages so low you’d need a boxcar full to od.
There are three pharmacists where we get our prescriptions filled. Two of them are helpful. The other one treats me like a criminal/dope head. There have been times when I have wanted to smack him. One time, he questioned whether I needed two pain medications. I looked at him and said, my doctor thinks I do. He said nothing more. Pharmacists are NOT physicians, and that’s why Ohio law now requiring diagnoses to be written on scripts is insane.
It’s strange how this post reminds me of gun control advocates v. s. protectionists. Both sides want to see guns and drugs out of the hands of crazies and drug fiends. But both want unlimited access to guns and drugs. For unlimited access to drugs, it has yet to be written into the Constitution in the same way that the 2nd amendment is used by the pro gun lobby. Wonder what the pro gun lobby would say if you told them that ” drugs don’t kill people or nations …. drug dealers do”. Would they, by their own reasoning support unlimited access to drugs as a constitutional right?? Perhaps we too could scream …. “They’re coming to take our drugs away!!!!” Strange bedfellows.
You’d think that there would be a way for medical professionals to be good advocates for their patients. There’s been a fair amount of research regarding the long-term harmful effects of chronic pain on patients. The AMA should be able to work with the DEA to come up with a better way to help long-term chronic pain sufferers to be able to manage their protocols without being treated like criminals.
My primary care doctor is a personal friend. He’s scared to death to prescribe narcotics lest he run afoul of the DEA. He’s angry over how the government has gotten between doctors and their patients. All he wants to do is help people. Anything that keeps him from doing that is unacceptable noise.
It’s a sad and difficult conundrum. I used to lean in the direction that all drugs should be decriminalized. Let responsible adults decide what they need or want to put into their own bodies. This was before I worked in Child Welfare and saw the devastation of the opioid epidemic first hand. People were losing their families, even their lives.
More than one client shared that either he/she or their buddies started down the path to addiction after starting prescription painkillers for an injured back, or even after dental work. For some, this was a segway into the use of heroin. I’m sure that there had to be more to it than this. I believe some people have a genetic predisposition toward addiction.
I worked with one young woman who would fain or exaggerate various illnesses in order to obtain painkillers
What is the answer that would allow people who truly need these drugs for long pain management to easily receive them while at the same time keeping them out of the hands of those who are abusing meds or procuring them for later sale on the streets.?
Is there a sensible and wise balance? Would it actually be better to move in the direction of decriminalizing the possession of small amounts of presently illegal drugs for personal use and put more emphasis on treatment options rather than primarily incarceration? Or, would this simply open the floodgates all the more?
Us chronic pain sufferers are screwed because we’re relatively few and VERY dispersed across the USA .. not a very good model for becoming a lobbying group to apply political pressure. But the Doctors have a VERY powerful lobby in the AMA … that said, I recall reading where the AMA strongly disagreed with the FDA and DEA when they changed the rules a few years ago … like where the FDA reduced the “recommended dosage” of Hydrocodone APAP down from 8 pills a day to 6 pills a day
… and over strong objection by the AMA … the FDA and DEA implemented the change – and just like that (snaps fingers) a bunch of people who have never met me, don’t know I even exist have “diagnosed” me and rewritten my prescription which cut my allotted medicine intake by 25%. I’m pretty sure my Doctor chose an early retirement after a few years of FDA/DEA intense scrutiny over putting up with the hassle of having a microscope jammed up his ass and being forced to fleece his patients with unnecessary office visits and having to listen to those patients complain repeatedly that the new “recommended” dosage is inadequate.
You know – my Doctor had empathy for me (as does the new doctor who filled his shoes) and I equally empathized with his plight … we’re all screwed, it’s high time we organize into some type of political force … but I am skeptical that this will ever happen
I never heard of Kratom before today. I’m going to check it out very soon. I inherited a body that has no receptors for most of the opioids on the market,so O have to be creative. I think without Gabapentin I’d probably be dead already. Reading about opioid abuse in the Midwest and Northeast, the cure for that will be to bring back our manufacturing jobs, though canals in both parties seem to oppose this for their own unstated reasons. And naturally,they want to criminalize opioids for those of us who have pain management problems. There’s money to be made in those private,for-profit prisons. Having to decent good paying jobs led to recreational use of the drugs, and the canals know it. American food tastes great,though health-wise,it’s basically garbage. That’s why,in addition to maniacal levels of stress from 40 years and counting,so many are sick these days. This has been my personal experience. I can’t even get my clinic to give me vitamin shots like B-,twelve,because they “don’t do that anymore,and iys against protocol.” I wish I made all this up. But this all must change or we’re done for.