In the late 1990s, I started having problems with joint/muscle pain and fatigue. At first, I ignored my symptoms, thinking I was just overworked and tired. After months of pain and tiredness, I decided to see a doctor. The doctor I saw then is still my primary care physician today. It took a year or so to determine I had fibromyalgia. Over the years, I went through a lot of tests and treatments, along with taking more medications than I can count.
I took a variety of pain management drugs, both narcotics and non-narcotics. In 2004, I started taking narcotics such as Tramadol, Darvocet (which was later banned because it caused heart problems), and Hydrocodone. For years, I took both Tramadol and Hydrocodone — upwards to 80 Morphine equivalents a day. I also took a Benzodiazepine, Restoril, for muscle spasms and sleep. And then came the unholy war on opiates — a war my primary care doctor doesn’t support, but is forced to accede if he wants to keep his job and license.
First to go was Restoril. Why? According to so-called experts, taking benzodiazepines and opiates together could cause respiratory problems (typically only in drug abusers or patients lacking tolerance build-up), so I had to stop taking Restoril. From there I tried numerous sleep medications, without success. I finally started using Cyclobenzaprine at night — 20 milligrams. Sometimes it works, sometimes it doesn’t. Tough shit, so sorry, you are out of luck if it doesn’t.
Next to go was Tramadol. “Can’t take two narcotics,” the doctor sadly opined. After weeks of withdrawal hell, I stopped taking Tramadol. I was still taking 50 morphine equivalents of Hydrocodone a day. And then came the edict that my Hydrocodone dosage had to be cut. Last doctor’s visit it was cut to 40 and sometime later this year it will be cut to 30. I have no choice in the matter, and neither does my doctor. Keep in mind, my pain has only gotten worse during this time. Over the past fifteen years, I was diagnosed with degenerative spine disease, gastroparesis, and exocrine pancreatic insufficiency. I had numerous procedures, including experimental ones, and two major surgeries. While the surgeries helped address specific pains, my core pain problem remains. This is my cross to bear. Drugs help, but they are not a fix. Cannabis helps (which my doctor doesn’t know I take, because I know he is required to stop my narcotic pain medicine if he finds out I’m using cannabis), but its effects are short-term. Why many doctors refuse to prescribe cannabis is beyond reason. Worse, insurance companies refuse to cover cannabis, so chronic pain sufferers are forced to pay out of pocket for it. In Ohio, cannabis is prohibitively expensive, so I drive to Michigan — thirty minutes away — to get my “fix.”
Over the years, my doctor has referred me to four different pain clinics, without success. None of the clinics was narcotic- or cannabis-friendly; all were run by anesthesiologists who were more interested in performing procedures and giving steroid injections than they were in treating long-term, chronic pain. I found the pain clinics to largely be a waste of time. One doctor, who never looked me in the eyes, said there was nothing he could do for me. Another treated me like I was a drug-seeking addict, even though I have NEVER, not ONE time, abused my prescriptions.
The FDA has admitted that they erred in their directives on opioid use; that people with chronic pain were being unnecessarily harmed, often leading to suicide. Despite new directives, many doctors and pain clinics continue to be narcotics-adverse. I see no hope of it being better any time soon. I’ve concluded that limiting legal liability is more important to doctors — most of whom now work for large corporations — than treating people with chronic pain. I expect there to be an increase in illegal drug use and suicide by chronic pain sufferers. When pain has you screaming and banging your head on the wall, you will do almost anything to make it stop, and that includes killing yourself. Chronic pain sufferers don’t want to die, they just want the pain to stop. And if the pain can’t be stopped, we, at least, want everything possible done to make our suffering tolerable. And let me be clear, when chronic pain sufferers kill themselves, the blame almost always lies at the feet of callous, indifferent medical corporations and doctors.
I don’t need advice or treatment/drug suggestions. I’ve been going at this for twenty-five years. I know my stuff inside and out. I intimately know every inch of my body; what’s causing my pain, and how to lessen it. Well-meaning, but uninformed advice, while humored, is not helpful. From prescription drugs to supplements to alternative medicine treatments, it is likely I have tried them. This post is more about making readers aware of what I personally face and what chronic pain sufferers deal with, in general. If you are a chronic pain sufferer, you know what I am talking about. Twenty years ago, a primary care physician could prescribe narcotic pain medications without question. Today, they have not only their corporate overlords breathing down their necks, they have the FDA threatening to monitor their narcotic prescriptions. Pharmacies face similar scrutiny. Both federal and state regulations make it almost impossible to abuse narcotics via doctors’ prescriptions. Gone are the days of doctor shopping or filling prescriptions early. Narcotic users are now entered into a database accessible by doctors, pharmacies, and law enforcement. This makes it impossible to game the system, as was common years ago. I understand the need for some regulation, but these days the regulations are punitive, leading to needless pain and suffering. Chronic pain sufferers are literally being regulated to death.
Are you a chronic pain sufferer? Please share your experiences in the comment section.
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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I hope your doctor doesn’t read this blog. If he does he now knows about the cannabis! 😂
Yes, but if he is reading he could do the right thing, and ignore it. Let’s hope.
As far as I know, he doesn’t read this blog. 🤣 Too busy. He has a lot of irons in the fire. 🔥
Fortunately, I only have to use Duloxetine, Meloxicam, Gabapentin, supplemented with Tylenol, to get through my day. Exercise helps to a certain point. Meloxicam is mostly for uncontrollable muscle spasms, and the other 2 are anti-depressants as well as pain relievers. Even with all that, sometimes my joints hurt really bad, or my whole body is full of pain.
I don’t try to get narcotics because I had some when I had oral surgery, and I hate the stoned feeling more than pain. That could change as I age. Pot is legal in Colorado, but it’s also expensive.
I think part of the problem with pain management is (besides the fact that they don’t care) is society’s unwillingness to acknowledge there is a huge population of people who who need these meds. The old American ideas of “Pull yourself up by your bootstraps”, “Grin and bear it”, “Quit whining and deal with it ” are still prevalent. I’ve been blown off by people saying everyone suffers, it’s old age, our ancestors did fine without drugs, and so on. Yeah, our ancestors did like my dad and his family before him; they just drank themselves to death when life was hard. But, that was socially acceptable.
Just because grandpa didn’t have access to modern treatments doesn’t mean we should suffer. Young people with chronic pain, who want to work, would be way more productive with proper meds. And older, retired people shouldn’t have to suffer just because they cannot work, or wish to be retired. The disabled should not suffer because they may not be able to contribute to the workforce the way able bodied people think they should.
Pain needs to be seen as something to be given serious attention, just like high blood pressure, diabetes, and heart disease. Pain may not be entirely eradicated, but people should be able to enjoy life. It should be reduced to, at least, a minor nuisance.
Now I hear that JFK jr. wants to ban anti-depressants. That, and lack of pain meds will drive people to suicide. Not to mention that many of those drugs must be weaned off very slow. It burns me up that the billionaires are getting all the drugs they want, legal and illegal, while the rest of us must beg for a tiny bit of relief. I hope that Big Pharma is so invested in these drugs, they’ll push Jr. to back off.
Sorry for the extra long post. We were suffering under a halfway decent government. This one wants to kill us.
On the spectrum, I am not suffering like you. Chronic and bouts of acute pain but not like you Bruce. I am so sorry you can’t get relief and that the system has failed you along with so many others. I hardly know what to say.
Bruce – You clearly are one tough man.
While I have been the fortunate recipient of great health care by some of my primary care physicians, I have completely lost confidence in the profession.
First – drugs, any drugs, all drugs, that are abused – prescribed medication or street – Bruce, care to weigh in on why
so many people, especially teen or young men and women, whom are not in “physical” pain are KILLING THEMSELVES in the USA …… what are the stats?, Well over 100,000 per year from OD’s? And gee I thinks that’s
only the stats from Fentanyl or opioids. Throw in the DRUNKS, heroine, coke, speed etc and what – that number doubles? Maybe more.
Our dear politicians and social leaders (including cult churchers) don’t seem interested in addressing the “why”?
Oh, other than the obligatory …… (The devil, sin life, etc.) On no, lets ignore reality and blame it on “supernatural spirits”.
We Americans are told everyday by the disgusting media propagandists that pollute our brains 24-7, this is the greatest country in the world, blah,blah,blah. ‘ Interesting about 200,000 of these citizens, living in this American Nirvana, kill themselves prematurely in this “great” country each year. That’s Nam x 4 every year.
What is even more devastating is that the Cult maniacs writing the laws are not satisfied enough in 200,000 dead every year, oh no, they want to be the deciders on WHEN ALL of US die. This society RELISHES maximizing suffering until the body just can’t take it anymore. Only then will the cultists be satisfied.
I hate religion.
Thank you for sharing your experiences. I am a pharmacy tech (not a pharmacist) and what you have said gives me better insight to the struggles that some of our customers have.
This is only my perspective from the “other side of the counter” (the pharmacy I work at in central Ohio). I am not a chronic pain sufferer and I’m not going to pretend I can begin to understand it. I have intolerable emotional and mental suffering for the last 10 years, but that I can at least turn off with a bottle if it gets too out of hand. I can’t imagine being in 24/7 physical pain with no relief.
You are correct that there is a database, accessible to pharmacies (among others) that our pharmacists will query to ensure no one is getting multiple scripts at the same time. We also will not fill early. The excuses people come up with to get early fills are interesting, to say the least. Everything from someone stole it to I dropped it in the sewer to I’m going on vacation (every month) to I microwaved it accidentally. We have never once heard “I am in intolerable pain. Can you please help me?” I can’t tell you whether or not we would fill early since that is the pharmacist’s call, but we would contact the doctor on their behalf.
The problem we run into is there are customers who – and I don’t know how to be politically correct or kind here – are dope heads who are abusing drugs just to get a “high” out of it. Although it may not be right for me to say that, my nephew (now deceased from an OD) used not because he was in physical pain, but because he wanted the feeling he had when he was on drugs. Those people exist, too, and those of us in the pharmacy don’t want to contribute to someone getting high for the heck of it. We’ve had problems even when trying to stop abuse. We had three girls try to set up camp on the front sidewalk and were using. One overdosed, fell and hit her head on the concrete, and I honestly don’t know if she lived. These are the people who should not have too many drugs.
The biggest problem for us as a pharmacy is we don’t know who is using narcotics because they are in pain, like you are, or are using them for inappropriate reasons. There are just no easy answers. I sincerely hope you can find some relief.
I use the Meijer Pharmacy. I’ve used CVS in the past. Meijer refuses to auto refill narcotics, so I have to call them every time I need a refill. One time, they were out of hydrocodone. Since Meijer will only refill one day early, I rarely have much in reserve. In this case, it was four days before they had the drug in stock. I asked them to transfer the prescription, but they said they weren’t allowed to so. This left me without hydrocodone for two days (it was a weekend). Needless to say, I was in withdrawal by the time the script was filled. 🤬🤬 The crazy thing is the pharmacy could have given me a partial refill, but they don’t do so on narcotics. Please make sense for me of these rules. 🤬
I hear you about drug seeking customers. My mom was a drug addict back in the day when it was easy to doctor shop. That said, I play by the rules, yet I often feel like I’m being punished for being on pain meds.
I don’t (generally) blame the pharmacists. They have rules they must play by too. Occasionally, there will be an asshole pharmacist, but most of them are helpful, a delight to work with.
Wow… not ok with that pharmacy! They were correct on one thing – narcotic RXs can not be transferred, at least in Ohio, but they should have at least partial filled. No one should have let you go into withdrawal IMO.
Our pharmacy will partial fill narcotics, but I think that means the customer surrenders the rest of the script. For example, if a customer has an RX for 30 but we only have 5, we can give them 5, but they “lose” the other 25 and can’t have them filled. I am almost certain the person can at least get a new RX so they aren’t out 25 pills for treatment, but of course that requires the customer getting a doctor to send a new RX. We generally future fill them, meaning they will be available on the appropriate date for pickup, but it seems some customers have to call us instead of getting future fills. I don’t know why. I don’t think some of our rules are specific to our pharmacy… or I sure hope we aren’t doing that to people. Only pharmacists can fill narcotics and I’m not one, so I just quietly observe to see what happens, therefore I’m not sure about some things. I wish I COULD make sense of the rules.
I agree 100% that people who are playing by the rules should never be treated badly in any way for being on pain meds. I agree that there can be a “punishing” attitude but hope we don’t do that to people. (I have not observed that happen, thankfully.) But, like you said, there can be bad pharmacists out there who don’t treat people right.
I hope you have a pharmacy that is treating you right now! And of course, I hope you get relief some how.
My health issues are continuing to develop. The main one is osteoarthritis. My fibro pain had been well managed (while I am always in a state of exhaustion), but I wasn’t ready for sharp, stabbing pains in ALL my joints. So, I take some prescription drugs, a steady dose. (cyclobenzaprine helps my joint pain? Who would’ve thought). I also started using cannabis over a year ago. It helps me too a lot with the sleep thing and pain thing.
Anyway, I agree 1000% with Bruce’s complaints. I went to the pain clinic in Bryan for several years. And they are ALL about shots and procedures. The health business, and the health insurance business, and government are trying to screw us out of money. I have found some pretty good medical care but it takes WORK, and not everyone can do that work.
Bruce, I have had a spinal condition called D.I.S.H., diffuse idiopathic skeletal hyperostosis, which is a calcium buildup on the front of the spine. I’m fine sitting, lying and bicycling, but standing and walking causes intense pain in my lower back. I’ve taken Tramadol for a few years to little avail. I’m trying PT and core strengthening to see if I can get any improvement. The Sackler family ruined any progression in the use of opiates for chronic pain management so the options are very limited. I have much empathy for your suffering and hope you can find some kind of answer. I don’t have one but you are in my thoughts, but not prayers. As they say at FFRF, nothing fails like prayer.
IM ketamine helped me with psychological pain, I’m told it can offer relief for physical pain. Studies on Google Scholar say it’s being explored as an option for sufferers of fibromyalgia, often being touted as an alternative for people with substance abuse disorder. It would be very ironic if doctors who called you a drug seeker denied you this option. It isn’t just for “presidential advisors”, people with empathy can benefit from it as well.
Wrote you a long reply last night, Bruce, but it seems to have disappeared into the void. Can’t remember what I said, it’s been one of those days. All in all, I get your problem.
I found it, For some reason, it went to my blog’s spam folder. I suspect this happened because you listed s number of drug names. Spammers often do this.
I guess it thought I was trying to sell you something. I get more emails promising money and magic cures. Glad you found it! 😸
It’s so messed up that people can’t get the treatment they need. There’s a lot of blaming of patients for their medical issues, it feels like. Look at RFK Jr. and the wellness community – they seem to think that having the correct diet, exercise regimen, supplement arsenal, red light therapy, or whatever unregulated fad someone can sell will fix all our health issues. That’s simply not true. We live in a time and place where massive strides have been made in medical treatment, yet patients are judged for the issues they have and many are restricted on getting treatment. And don’t get me started on medical costs. A lot of people are going to suffer under RFK Jr, but he’s not the only problem. Lack of affordable comprehensive medical care, demonizing certain diseases, ignorance, distrust of experts, a predatory system of health and medicine for profit, unregulated supplements, rampant misinformation, these are all serious issues.
Bruce, I am sorry you have had to endure so much pai
Missimontana makes a great point: Our “pull yourself up by your bootstraps” culture dismisses pain. People who suffer chronic conditions are accused of being weak and “dramatic” or of seeking attention. And those who take medications are seen as addicts.
Bruce, you often relate experiences we’ve had in common and the pain management ordeal is top of the list. My pain was and is due to peripheral artery disease and at it’s worst it was ischemic. Ischemia hurts because tissue is dying from lack of blood flow. Dying tissue hurts like a bitch I’ll testify. This started about the time opioid restriction came down from on high. My Corporate employed Doctor got nervous about the token amount of morphine I relied on for sanity. I got bluntly accused of drug seeking. I don’t smoke or drink and this was humiliating and infuriating and I fired that guy, even writing his employer a nasty letter for his file. Fortunately, this state had medical cannabis and prescriptions were trivially easy to get. (no longer required by the way) Rather than beg for morphine I put aside my apprehension about “devil weed” and tried edible cannabis. It worked with less side effects than morphine and without the bleeding and bruising from large doses of aspirin. Alarms about addiction and bad trips etc were and are propaganda. I’ve never had a bad experience nor experienced cravings. My main complaint is cannabis products are too variable. Some work better than others and I had counterfeit products that did nothing. Science on cannabis, suppressed so long, is now being done. It’s now known, smoking is the biggest bang for the buck. Sucking smoke into my lungs is no option so I’m limited to edible “gummies”. Fortunately that works and hopefully will as long as we need it.