Is My Life Worth Anything to Doctors and Politicians?

By Beth Sweet, Guest Columnist

I keep a journal and usually write about my symptoms and medical appointments. But today I vented and afterwards realized this might be something I should share.

I'm doing really bad with writing lately. It's just so hard to find the motivation to do anything. Between pain, exhaustion, migraines and IBS every day, I feel like crap! I'm so sick of feeling like this. I just want to feel like a normal human being again and not wake up every day realizing that isn't going to happen.

Lately I've been wondering if I even have fibromyalgia or if I was misdiagnosed. We have tried so many treatments for it and none of them work. I feel like a guinea pig half the time. Do doctors even know what they are doing?

I've tried over 19 medications and treatments. So far, the only thing that helps is what all the doctors say isn't recommended for fibro and that's oxycodone. I'm in my own body, know what I feel, and what works. But I'm too afraid to ask my doctor for a therapeutic dose instead of a bare minimum dose that only gets me a few hours of relief a day.

All because of this damned opioid epidemic!

They freak out about addicts overdosing on opioid medication, but addicts will find a fix even without prescriptions. What about chronic pain patients who are killing themselves because they can't get treatment for their pain?

I wish the politicians and lawmakers could suffer from chronic pain for a while and get treated like we are. I bet then the laws would change! I don't think they could survive it.

BETH SWEET

BETH SWEET

I'M SICK OF PAIN! Sick of crushing, aching, searing, cramping, stabbing, stiff, radiating, grinding, burning, tingling, constant pain. When I sit, stand, walk or lay in one position for too long. Headaches and migraines over half the month. PAIN ALL THE TIME!

But I can't ask a doctor for what I know works because everyone is in a panic about opioids. I am on the lowest possible dose. I get just enough for 4-6 hours of relief a day! God forbid I have a flare that makes it nearly impossible to move and lasts for days. It's not fair!

I want to go to church.

I want to go to my kids’ events

I want to be able to earn an income and be a functioning member of society

I want to not have my kids feel like they must take care of me. It's supposed to be the other way around!

I want to get well, but that's never going to happen. I must live with the fact that I am going to feel like crap on varying levels for the rest of my life.

Think about that. If someone told you that from this moment until the day you die you are going to be in pain, exhausted and unable to lead a normal life. That we don't know how to cure you or even if there is a cure. We aren't even sure what's wrong with you. We've tried everything and none of it has worked. Maybe it's all in your head.

How would that make you feel? Frustrated? Hopeless? Pissed? Sad?

And what if those same people who told you they don't fully understand your illness will not give you the one drug that gives you relief because "it's not an approved treatment for your diagnosis." They’ve already admitted knowing very little about it anyway!

What if they treated you like a drug addict because you asked for a medication that finally gives you some pain relief?  I have no problem getting medication for my thyroid, insulin resistance, anemia, IBS or any of my other health issues. But God forbid I ask for treatment for chronic pain.

I don't take those meds to get high. I don't even understand how people do, they don't affect me that way. I take them to get some of my life back. Is my life worth anything to these doctors and politicians?  I'm 38 and a hermit because of my pain and health issues. I've been sick for years and getting worse.  

I want to make something clear. I'm not going to kill myself. I have my family to live for. Even when my life feels worthless, I think of them. But not every chronic pain paint has that because this illness causes isolation and hopelessness. And no, we aren't in pain because we are depressed. We are depressed because we are in pain. There is a difference, so please stop giving us antidepressants to use as pain meds!

Stop ignoring chronic pain patients. Some are at the point where they can't take the pain anymore and the doctors that could save their lives are too concerned with the opioid epidemic to help!

I hope to find a doctor someday that thinks my life is worth living.

bigstock-Tell-Us-Your-Story-card-with-c-78557009.jpg

Beth Sweet lives in Michigan.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Social Media’s Role in the Opioid Epidemic

By Douglas and Karen Hughes, Guest Columnists

Drug epidemics since 1900 are dynamic and our hyper-information age makes ours even more pronounced. The so-called “opioid epidemic” is contingent upon socioeconomic demand and available drug supply. To fully understand it, we must look beyond opioid medication as the sole contributing factor.

Social media could be one cause that everyone has overlooked.

Overprescribing of opioids was initially the problem and it helped fill numerous medicine cabinets. Coincidentally, this occurred at about the same time as the explosion of cell phones, texting and social media, and the resultant peer-driven social narrative.

Instantaneous information exchange brought teenagers into contact with “high school druggies” — which their pre-cell phone parents knew only as a separate social group. Contact with them was taboo. Today, however, everyone is part of the larger social narrative.

Relating the euphoria of opioid use in open forums caused adolescents, who already feel indestructible, to rebel by trying them. These impressionable youth become attracted to opioids in the same way their parents were attracted to alcohol, tobacco and marijuana. This sent teens scrambling to find a free sample in grandmother’s medicine cabinet.

bigstock-Teenage-Couple-Taking-Drugs-At-13909076.jpg

Many renowned physicians believe addictive personalities are actually formed by a genetic predisposition to addiction. All that is needed is some substance to abuse. Alcohol is usually the gateway drug for adolescents, the “first contact” for many teens. Forgotten opioids in a medicine cabinet only come later. Addicts will often say, “My drug use began with a prescription opioid.” But addiction experts know the battle was already lost if there was no intervention after “first contact” with drugs.

Society has long blamed overprescribing for the opioid epidemic, but the last three years have proven that to be a red herring. The mass closing of pill mills in 2015, the CDC opioid guideline in 2016, and the steep reduction in opioid production that followed in 2017 have only accelerated the epidemic. Forcing disabled intractable pain sufferers to suffer or self-medicate was not the solution.

The Centers for Disease Control and Prevention postulated that overprescribing caused the opioid epidemic because they only had clinical evidence for short term opioid therapy. Instead of opening a wider dialogue and seeking more evidence, the lack of critical long-term studies was used as an excuse to limit prescribing. Statistical manipulation of overdose deaths was used to confirm this errant policy.

This is emblematic of all investigations into our present drug problems. Society ran the fool’s errand that one blanket policy could be found for hundreds of diverse regional and local drug problems.

The opioid epidemic most likely emanated from widely accepted alcohol use and the social lure of opioids by adolescents. It has little to do with patients.

raw.jpg

Douglas and Karen Hughes live in West Virginia. Doug is a disabled coal miner and retired environmental permit writer. Karen retired after 35 years as a high school science teacher.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Other Victims of the Opioid Epidemic

By Katie Burge, Guest Columnist

Imagine the fear, frustration, helplessness and anger you might feel upon learning that your doctor cannot treat you to the best of his or her ability because they’re afraid of being arrested. 

I don't have to imagine that because I am a chronic pain patient with a degenerative spinal condition, plus severe osteoarthritis and fibromyalgia; each of which cause severe chronic pain 24/7. Combined, they can make simple tasks like getting dressed in the morning sheer torture.

Pain patients are the other victims of the so-called opioid epidemic, the ones the media usually don’t mention unless they're blaming us for other people's drug usage. 

Patients are being forced to live in agony and, as a result, increasingly lose their lives due to catastrophic medical events, such as stroke, heart attack and even suicide.

These can all be triggered by the physical, mental and emotional pressures of trying to survive with inadequately treated chronic pain.

bigstock-Depressed-Man-Sitting-On-Top-O-48751034.jpg

Why?  Because politicians and bureaucrats (who refuse to admit the government is completely impotent at controlling the proliferation of illicit drugs) have managed to sell the public on the ridiculous premise that refusing medically necessary medication to one group of people will somehow alter the behavior of another group, and handily end America's drug crisis.

This approach simply does not work. Torturing vulnerable pain patients by refusing them life-giving medication will never make the slightest dent in the illegal drug trade because, sadly, people who want to get high will find something somewhere that will enable them to do so. 

Also, most of the prescription opioids that people abuse DO NOT come from doctors or pain patients. Less than one percent of legally prescribed opioid medication is diverted.  People in true pain are not going to suffer additionally by sharing or selling their medication. And doctors are not as careless with their prescription pads as the powers-that-be would like you to think.  

Nonetheless, the entities that control doctors’ licenses to prescribe opioids have yielded to political pressure by ordering doctors to either cut back on pain medication to the point that it's ineffective or stop opioid treatment altogether, regardless of patient need or outcome.

Inadequately treated chronic pain has stolen a great deal of my independence and quality of life, and though I hate the idea of taking pain medication at all, my greatest desire is to simply be able to fully participate in my own life again.  I will never be pain free, but I long to be able to play with my grandchildren, go to the theater or sit through an entire movie (and still be able to walk back to my car).

The mainstream media is also responsible for the ridiculous narrative that opioids have no legitimate clinical use and are immediately addictive. The result of this bias and hyperbole is that most folks believe outlawing the legitimate medical use of opioids can only be a good thing. Society teaches us that pain is somehow shameful.  We must “suffer in silence” and learn to control our pain without complaint or medical intervention. 

With such an abundance of myth and misinformation, it's no small wonder that actual facts about pain tend to get lost in the mix. Please allow me to share a few:

First, many overdose deaths are made to sound as though they were caused by a single prescription or even a single dose of opioids, when they are actually the result of a mixture of different medications, street drugs and alcohol. 

Second, chronic pain affects more Americans than heart disease, cancer and diabetes combined.  And studies have repeatedly shown that less than 4% of those who take opioid medication for pain become addicted.  They might develop a dependence or tolerance, but that occurs with many medications.

Physical “dependence” simply means that, if a drug or substance is stopped abruptly, the body will react by exhibiting withdrawal symptoms.  “Tolerance” occurs over time, as the dosage of some drugs might need to be adjusted as the body grows tolerant to its effects. Neither of these conditions is unique to opioids, nor are they necessarily indicative of addiction -- which is characterized by compulsive drug seeking behavior and use, despite harmful consequences.

Personally, I believe the question of addiction simply comes down to motive.  If your primary motive in taking opioids is to get high, you might be a drug addict.  If your only motive is pain relief and once that relief is achieved you do not increase the dose, you are not a drug addict.

Drug abuse is a complex social issue that has no easy fixes.  It should not, however, be confused with the medical management of chronic pain.  All life is precious and should be valued and protected, but not at the expense of others.

So, the next time your favorite TV show has a story line about someone going to the hospital and being transformed into a raving drug addict, or you hear yet another biased news story about opioids, do something about it.  You can help save lives by contacting the source of those fallacies and insisting that they tell the whole truth about the opioid crisis. Call them. Write a letter. Send an email.

We desperately need your voice, your prayers, your empathy and your compassion.

20180603_155647.jpg

Katie Burge lives in south Mississippi, which she calls a “a veritable wasteland” for pain treatment. 

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Lessons from Dreamland About the Opioid Crisis

By Roger Chriss, Columnist

The book Dreamland: The True Tale of America's Opiate Epidemic by Sam Quinones has become a playbook for many lawmakers, regulators and journalists covering the opioid crisis. It is an award-winning book from 2015 that describes the rise of Mexican “black tar” heroin, pill mills and opioid addiction starting in the 1980’s.

It is not a book about persistent pain disorders or the people who endure them using opioid medications.

Quinones interviews heroin couriers and addicts, as well as prescription opioid addicts. He describes heroin smuggling, heroin distribution networks, prescription opioid diversion, carefully crafted medical opioid scams, and misleading marketing by opioid manufacturers. But chronic pain patients do not appear in Dreamland at all.

Early in the book, Quinones brings up a 1980 research letter in The New England Journal of Medicine and the work of Russell Portnoy, both of which are alleged to have contributed to opioid overprescribing. But the overprescribing does not involve people with chronic pain disorders. Instead, Quinones explains that “in the Rust Belt, another kind of pain had emerged. Waves of people sought disability as a way to survive as jobs departed.”

And overprescribing did not necessarily mean over-consumption. As Quinones states, “Seniors realized they could subsidize their retirement by selling their prescription Oxys to younger folks. Some of the first Oxy dealers, in fact, were seniors who saw the value of the pills in their cabinets.”

Such opportunities were not ignored. More conventional drug dealers moved in and unscrupulous physicians opened drug-dealing clinics that we now call pill mills.

Quinones explains how to recognize a pill mill: “I asked a detective, seasoned by investigations into many of these clinics, to describe the difference between a pill mill and a legitimate pain clinic. Look at the parking lot, he said. If you see lines of people standing around outside, smoking, people getting pizza delivered, fistfights, and traffic jams—if you see people in pajamas who don’t care what they look like in public, that’s a pill mill.”

The importance of pill mills to the opioid crisis cannot be understated.

“It helps that OxyContin came in 40 and 80 mg pills, and generic oxycodone came in 10, 15, 20, and 30 mg doses—different denominations for ease of use as currency. The pill mills acted as the central banks, controlling the ‘money supply,’ which they kept constant and plentiful, and thus resisted inflationary or deflationary spikes,” wrote Quinones.

Dreamland goes on to explain that in rural Appalachian communities an underground economy arose with prescription opioids as currency, supported by scamming Medicaid and Social Security disability. Some addicts funded their habit by shoplifting at stores like Walmart and paying dealers for opioid pills with their stolen goods. Other addicts worked with dealers to scam Medicaid to pay for opioids from pill mills or to get opioids from legitimate clinics using forged medical records.

Opioid addiction was also driven by high school and college sports. Quinones explains that “after the games, some of the trainers pulled out a large jar and handed out oxycodone and hydrocodone pills - as many as a dozen to each player. Later in the week, a doctor would write players prescriptions for opiate painkillers, and send student aides to the pharmacy to fill them.”

Thus, the opioid crisis is a tragic result of a confluence of forces, including heroin sold under a business model virtually impervious to traditional law enforcement techniques and legal opioid pills used illicitly. As Quinones explains at the end of the book, “One way to view what happened was as some enormous social experiment to see how many Americans had the propensity for addiction.”

None of this involves medical opioids being used for pain management in people with chronic, progressive, or degenerative disorders. Quinones frequently mentions “chronic pain” but never defines the term precisely. However, his examples consistently refer to ongoing pain from a workplace accident, sports injury or accidental trauma -- not the persistent pain of a medical disorder. He does not interview pain management specialists or chronic pain patients because that is not the point of the book.

However, he does acknowledge the opioid crisis is having an unintended effect on people with persistent pain disorders. Quoting Quinones, “Patients who truly needed low-dose opiate treatment for their pain were having difficulty finding anyone to prescribe it.”

That is the lesson that Dreamland offers but too few people are learning. The opioid crisis is a dire manifestation of a larger problem of substance abuse. It is not about people with chronic pain disorders becoming addicted to opioids and then turning to heroin, an outcome that is exceedingly rare.

If we don’t understand what this book offers, we risk making the same mistakes that many lawmakers, regulators and journalists keep making. We’ll misunderstand the true nature of the opioid crisis and mismanage the response. And that will harm both opioid addicts and chronic pain patients, two groups that have already suffered enough.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Chronic Pain Patients Did Not Cause Opioid Epidemic

By Roger Chriss, Columnist

Contrary to common belief, chronic pain patients are not all opioid addicts and did not cause the opioid crisis. The vast majority of patients who are prescribed opioids rarely misuse or abuse them.

Opioid addiction is real and should not be ignored or downplayed, but we need to identify its true causes. Despite the growing number of restrictions on prescription opioids, overdoses and related deaths continue to rise, which strongly indicates that pain patients have very little to do with the so-called epidemic.

Some recent articles bear this out:

Science Daily reports that while the national death toll from opioid overdoses is soaring, only “a small minority of pain patients are represented in the mortality data.”

The journal Pain Medicine published research showing that most pain patients on low doses of short-acting opioids “have a low risk for developing a substance use disorder.”

Similarly, chronic pain patients generally do not experience dose escalation, but often remain stable at the same dose for months or even years. And according to the National Institute of Drug Abuse, doctor shopping by pain patients is rare.

For most chronic pain patients, opioid medications are part of a larger daily routine of pain management, and opioids are not craved any more than an athlete craves a vitamin supplement. Thus, the risks of opioid addiction among chronic pain patients is quite low overall, and there are well-established protocols such as the Opioid Risk Tool to screen patients and monitor those whose risk may be higher.

But all this evidence does not seem to convince regulators, politicians, the news media, and anti-opioid activists like Physicians for Responsible Opioid Prescribing (PROP). Fortunately, it can be clearly shown they are wrong and that chronic pain patients are unfortunate bystanders in the opioid epidemic.

First, there simply are not enough chronic pain patients on opioid therapy to account for the number of opioid and heroin addicts. The American Society of Addiction Medicine estimates that in 2016 there were over 2.5 million people addicted to prescription pain relievers or heroin.

There are at most 11.5 million chronic pain patients on opioid therapy. Even if 5 percent of them develop a substance abuse disorder, that would give us 575,000 opioid addicts. Where did the other 2 million addicts come from?

Second, people who suffer from chronic pain disorders are no longer prescribed opioids lightly or quickly. Instead, they start with NSAIDs like ibuprofen or naproxen, then onto anti-seizure medications like gabapentin or anti-depressants like amitriptyline or duloxetine, all the while also trying physical therapy, injections or other modalities. They are carefully screened, monitored and assessed along the way, with opioids considered only if everything else fails. This makes addiction a rare outcome.

Third, media coverage of the opioid epidemic and case literature on opioid use disorder routinely describe people becoming addicted to opioids after recreational use, trauma or surgery. It may be that “opioid addiction often starts with a prescription,” but it is usually a prescription for acute pain. And for many, the addiction starts with someone else’s prescription, perhaps taken from a family member or obtained from a friend.

Therefore, the treatment of chronic pain conditions can at most have only minimally contributed to the opioid epidemic. Chronic pain patients are not opioid addicts any more than a diabetic is an insulin addict, and in fact insulin is abused.

Unfortunately, chronic pain patients are often treated like addicts and the doctors who prescribe to them are even called “drug dealers.” This is harming chronic pain patients, doctors and people suffering from opioid addiction.

Opioid therapy helps people with chronic pain disorders remain employed, care for themselves and their families, and contribute to and participate in their communities. They are achieving what modern medicine and society wants: people who can work, pay taxes, avoid becoming a burden, and enjoy some quality of life.

Restricting opioids is not slowing the opioid epidemic. The increased availability of naloxone and improved care by first responders and emergency departments is helping to reduce fatalities, but opioid addiction still needs treatment and at present there is not enough of it.

To be clear, chronic pain patients and opioid addicts are two distinct groups, both of which deserve care and support. Treating pain patients as addicts can lead to denial of care, which may actually increase the number of opioid addicts. And conflating chronic pain with opioid addiction may be delaying care for people struggling to find addiction treatment.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.