Chronic Pain Accelerates Dementia

By Dr. Lynn Webster, PNN Columnist

In 2017, JAMA Internal Medicine published a study that found older people with chronic pain experience faster declines in memory and are more likely to develop dementia.  While prior research had shown a link between chronic pain and brain damage, this was one of the first studies to specifically suggest that chronic pain can cause dementia.

The authors reported that people aged 60 and over with persistent pain experienced a 9.2% more rapid decline in memory score when compared to people of the same age without chronic pain. This means that people with chronic pain may experience more difficulty in managing their finances, medications and social connections.

Dementia is a chronic condition of the brain that involves memory, personality and judgment. It is not a disease; it is a symptom of one or more diseases.

There are many types of dementia. Alzheimer’s disease is considered to be the most common.

Dementia usually worsens over time if the underlying disease remains static or progresses, as is the case with many chronic pain conditions.

There are an estimated 20 million Americans with high impact (the most severe) chronic pain who may be experiencing accelerated decline in cognition due to their pain. The amount of dementia appears to be associated with the severity and duration of chronic pain. Undertreated or untreated chronic pain may accelerate dementia.

Chronic pain affects an even larger percentage of elderly adults (one in three) than the general population. Since the prevalence of chronic pain increases with age, the probability of experiencing dementia increases as well. However, the reasons for that go beyond aging itself.

Seniors are more likely to take multiple medications that can contribute to mental confusion. On average, elderly people take five or more prescriptions. They may also use over-the-counter medications, which adds to potential drug-associated mental compromise.

Opioids, in particular, have been implicated in cognitive impairment. However, a study published in 2016 suggests there is no difference in cognitive decline between people on opioids and those on nonsteroidal anti-inflammatory drugs. The study's implication is that pain, not opioids, leads to cognitive impairment.

Brain Fog

Chronic pain appears to affect the function and structure of the hippocampus. This is the region of the brain that involves learning, memory, and emotional processing.

One explanation for the mental decline associated with chronic pain is that various areas of the brain compete for attention. Attentional impairment compromises memory by diverting attention to the areas of the brain processing pain. In effect, the brain is multi-tasking and favoring the processing of pain over cognition. This may, in part, explain the clinical phrase “brain fog.”

The Australian Broadcasting Company's "All in the Mind" website explains that pain damages the brain in several ways, including a change in the size of the thalamus and a decrease in the amount of a neurotransmitter (gamma-aminobutyric acid) the brain produces. In other words, chronic pain changes the brain structurally and functionally.

The prefrontal cortex is the part of the brain responsible for executive functions, such as cognition, social behavior, personality, and decision-making. It is also the part of the brain that modulates pain.

According to "All in the Mind," some researchers believe that chronic pain decreases the volume of the prefrontal cortex. Over time, brains damaged by pain lose the ability to handle pain — along with some of the personality attributes that make us who we are.

Brain Damage Can Be Reversed

The good news is that the brain damage caused by chronic pain can be reversed, at least to some extent. Unfortunately, the elderly are less likely to recover from dementia caused by chronic pain as compared with younger patients.

If pain is adequately treated, the brain may be able to regain its ability to function normally. A 2009 study of patients with chronic pain due to hip osteoarthritis showed reversal of brain changes when their pain was adequately treated. 

People who don’t have their acute pain managed are more likely to develop chronic pain. It is postulated that the changes in the brain that occur with chronic pain begin with the onset of acute pain. There is also some evidence that an individual’s genes may influence who is at greatest risk for developing brain damage from chronic pain and who is least likely to recover from it. 

Many people have criticized the concept of assessing pain as the 5th vital sign, and have called it a contributing factor for the opioid crisis. As I have said, pain may not be a vital sign, but it is vital that we assess it. Asking patients about their pain is critical to providing interventions that can mitigate the consequences of undertreated pain, including dementia. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find him on Twitter: @LynnRWebsterMD. 

The information in this column 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.

Praying for a Miracle

By Stephanie King, Guest Columnist

Up until May of 2010, everything was pretty easy going as far as my health was concerned. I was a happily married 22-year old and mother of a sweet one-year old boy. Then one fateful afternoon all of that changed.

There was a bad storm that day but we had to pay bills. My family and I ended up hydroplaning off the road and crashing into trees.

Luckily, our son was unharmed and my husband, while it was bad, suffered nothing worse than a broken leg.

I had the worst of the injuries and needed surgery. I broke my right foot in three places and my back in five. One of those breaks was a compression burst fracture, which means that my vertebrae basically exploded from pressure. 

Unfortunately, I also developed MRSA, a severe and dangerous bacterial infection. This meant packing the open, oozing wounds every day. Instead of getting better, the infection spread through my back and within a couple of months turned into sepsis. Two more surgeries and six months later, I was finally infection free.

A few years later, my pain was increasing due to degenerative disc disease and arthropathy, so my pain specialist started pushing epidural steroid injections. I was already on fentanyl and MS Contin, so I figured I would give it a shot. This would be the biggest mistake of my life.

I ended up having about ten injections. The last one caused extreme levels of pain and my body felt strange that night. I refused to get any more after that. 

Not long afterwards, I began developing neurological pain that I wasn't used to. Sometimes it felt like warm water running down my legs. Sometimes it was stabbing and biting sensations. Sometimes it felt like my bones were snapping. I didn't make the connection between the epidural and the nerve pain. I assumed it was a pinched nerve, because my back was so messed up. 

STEPHANIE KING

Then in the fall of 2016, my inner calves began to go numb. The numbness rapidly spread up my legs and into my groin. My GP admitted me into the hospital and I had an MRI done.

That day I heard the words I will never forget, the words that changed my life forever: Adhesive Arachnoiditis.

It was explained to me that this is a disease where scar tissue is engulfing spinal nerves, blocking the flow of spinal cord fluid because of inflammation of the arachnoid lining around the nerves.

The more I learned about Arachnoiditis, the more I realized I was doomed to a lifetime of unrelenting pain, a level of pain some doctors have compared to that of bone cancer. I learned of the possibility of paralysis. I learned how there is no cure, just medication to try to manage the disease symptoms and slow down its spread.

I was devastated but kept pushing on, ignoring the pain as much as possible.

Just over a year later, I learned something else. My birth control had failed. I was pregnant with our daughter. My pain specialist immediately dropped me. My obstetrician panicked and tried to get me in with another pain management doctor due to fear of a miscarriage.

I kept hearing how no one would see someone who was pregnant and not already an established patient at their practice. I was referred to a neurologist, but he told my doctor that there was nothing that he could give me that would be safe during pregnancy.

During my pregnancy, the Arachnoiditis symptoms increased tenfold. The burning in my feet and hands became unbearable. I'm one of the "lucky" Arachnoiditis patients who has scar tissue far enough up their spine to effect my arms and hands as well. I began jerking uncontrollably and developed tremors. I spent most of my pregnancy crying and screaming.

We have a beautiful daughter now! She is so sweet and smart! Unfortunately, my symptoms never subsided. I still don't have a pain management doctor. No pain specialist will see me.

I fear I was red flagged for doctor shopping, even though it was just my obstetrician trying to get me treatment. I have finally started seeing a neurologist but until he has reviewed all of my MRIs, no treatment will be given. I won't see him again for another month.

I live in never-ending pain. I rely on family a lot to help care for my children while my husband works. I have come to realize I have no good options at this point. I can continue on in pain and being a total burden to my family, just becoming more burdensome over time.

I could turn to marijuana but it is illegal in my state. My children could be taken away and I could go to prison. I could commit suicide but that would scar my children and further hurt the rest of my family. I am stuck.   

There are times I pray for death. I pray for the body I once had. I pray I could be the mother and wife I once was. I pray for anything to make it stop, even for just a little while. I pray for a miracle.

Stephanie King lives in Alabama.

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

The information in this column 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.

Fibromyalgia Researchers, It’s Time to Stop Watching the Flowers Grow!

By Donna Gregory Burch

As a fibromyalgia warrior and blogger, I read a lot of articles about new research findings. I continue to be amazed by how much time and money are wasted by researching the obvious or studying the same treatments over and over again.

After all, how many times do we need to prove meditation can reduce fibromyalgia pain? Didn’t we figure that out years ago?

I really thought I’d seen it all until an article entitled, “The Power of Flowers May Ease Fibromyalgia Symptoms,” showed up in my inbox last month.

As I read it, I literally said out loud: “Are you kidding me?”

In case you haven’t read the article, it summarizes a recent Israeli study in which 61 women with fibromyalgia completed a 12-week flower design course presented by a trained florist. At the end of the course, Tel-Aviv University researchers reported “quite amazing” improvements in the women’s fibromyalgia symptoms.

Yep, you read that right: The researchers claim arranging a few daisies and baby’s breath in a vase actually improves fibromyalgia.

Now, I don’t doubt for a minute that flower arranging is relaxing and could have a calming effect on the central nervous system. That, in turn, could lead to a reduction in pain and other fibro symptoms.

But so could watching butterflies or painting rocks.

While I think it’s wonderful researchers are looking at non-pharmaceutical treatments for fibromyalgia, studies like this completely invalidate the seriousness of our condition. These types of studies make it seem like almost anything will fix fibro, and that is just not reality.

Because of the stigma of fibromyalgia, we already struggle to prove to our doctors and loved ones that we’re really sick. What do you think the average person is going to think when they read flower arranging helps fibromyalgia? While I’m sure the researchers had good intentions, this study makes a complete mockery and joke out of an extremely painful, life-sucking condition.

In my mind, I think back to all of those doctors who tried to give me anti-depressants and anti-anxiety medications when I complained about unexplained pain, fatigue, bladder urgency, neuropathy and a long list of other symptoms. The message was clear: “It’s all in your head. You’re just a stressed out, middle-aged woman who needs to chill out.”

What happens when these same doctors read the Israeli study? I can envision them now referring their patients to the nearest community college for classes on cupcake baking and basket-weaving. As if we weren’t frustrated enough with the conventional medical system!

The truth is we don’t need more BS fibromyalgia studies like this one. We need researchers to get serious! We need them to take a deep dive into the minds and bodies of fibromyalgia patients and figure out what causes us to feel like a three-day-old warmed over microwave dinner.

We need real solutions – treatments that get to the root cause of our illness – not a new hobby!

Donna Gregory Burch lives with fibromyalgia and chronic Lyme disease. Donna covers news, treatments, research and practical tips for living with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter.

Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

There’s More Concern About Animals Suffering Than People

By Debbie Westerman, Guest Columnist

I have Complex Regional Pain Syndrome, as well four herniated discs in my lower back. Because of the “opioid crisis,” I was taken off the only medication that ever helped: fentanyl.

I see a reputable doctor and he is very sympathetic. But as he put it, doctors are no longer just being sued, they are being threatened with jail time.

In addition to my pain and fear, I felt so sorry for him. We’ve tried everything: nerve blocks, injections and I have two spinal cord stimulators.

I was weaned off the fentanyl and only have hydrocodone that I take for breakthrough pain. 

I’ve done everything I’m supposed to. I have an appointment with my doctor every 28 days, along with random drug tests to make sure I’m only taking what he’s prescribing.

My insurance doesn’t pay for the random drug tests. I have to pay $150 each time. I don’t abuse my meds. All of my doctors know what I’m taking. I don’t get any type of pain meds from anyone except my pain management doctor.

DEBBIE WESTERMAN

I have to go to work every day. I’m single and have to take care of myself. I use a walker to get around. It’s been months since I have slept more than 2 to 4 hours a night. I’m constantly turning over, putting the pillow under my legs or between my legs, and the rest of the night I’m in and out of bed trying to walk because the pain is so bad.

What really gets me is that if I were an animal and suffering this bad with this much pain, I would be humanely put down. As a society we’ve become more concerned about our animals than we are about people who are suffering unspeakable, unexplainable amounts of pain.

I’ve never wished my pain on anyone. But I really wish that there was some way that these people who think they know what’s best for me could spend 6 hours in my shoes. I guarantee they would be screaming a different tune.

Debbie Westerman lives in Texas.

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

The information in this column 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 Visible Few Pain Patients

By Dr. Lynn Webster, PNN Columnist

I receive several emails a week from people who ask for help because their treatment options have been limited or eliminated. They are in terrible pain, and they don’t know what to do.

One such person, Sharon Berenfeld, MD, recently shared an experience she had visiting her doctor.

“Dr. Webster, I came across a publication of yours. It struck a nerve with me. My pain is intractable. I have tried everything,” she wrote. “Before the exam room door even closed, [my doctor] announced to me, ‘If you think I’m just here to refill your pills, you can leave now.'

"I left in tears. I was being judged and punished for having a complication from cancer treatment. I completely understand the opioid crisis. But I feel impotent to do anything."

Who Are the Visible Few?

Earlier this year, Fox News' three-part series, Treating America's Pain: Unintended Victims of the Opioid Crackdown, showed the terrifying circumstances of people in pain and doctors under siege. One individual’s decision to commit suicide as a result of the crackdown on opioid prescribing embodies the struggles of people in pain and their providers' inability to meet their needs.

The visible few are the small number of people whose stories have been heard by journalists, media consumers and government officials. Their stories reflect millions of Americans suffering from chronic pain who live in the shadows and are invisible to most of us. 

The needs of people in pain and the challenges providers face when treating them have been overshadowed by the government's attempts to deal with the opioid crisis. The well-intentioned CDC Guideline for Prescribing Opioids for Chronic Pain has affected 20 million Americans with severe disabling pain.

It also is having consequences for everyone else in the healthcare system. Prescription opioids have been demonized and blamed for our current drug crisis.

Unintended Consequences

The CDC guideline was supposed to be voluntary. However, in practice, the guideline has been treated as a policy with the strength of a law, and it has had severe unintended consequences. Many people are worse off in its wake. Here is a summary of the most substantial effects of the guideline.

• Providers feel pressured to reduce the amount of opioids that they prescribe, regardless of their patients' individual needs. About 70% of physicians have reduced their opioid prescribing or stopped it completely.

• Insurance companies set prescription limits based on the guideline. In some cases, they override physicians' recommendations. That means insurers, rather than doctors, are making decisions about how to treat pain.

• Pharmacy chains are also limiting the amount of opioids they dispense, based on the guideline rather than on doctors' prescriptions..

• The Centers for Medicare & Medicaid Services and the U.S. Department of Health and Human Services have set dosage limits. Providers advocating for patients who need higher amounts must navigate a complicated appeals process.

• State attorneys general have used the guideline to evaluate whether a doctor is prescribing for a legitimate medical purpose. Deviation from the guideline has been used to accuse doctors of criminal conduct.

• In a desperate search for pain relief, some patients have turned to street drugs.

Where We Are Now

The CDC guideline has left a trail of misunderstanding in its path. Its authors acknowledged misapplication of the guideline in the New England Journal of Medicine, emphasizing that their intention was to provide guidance rather than to establish a mandate.

"Difficulties faced by clinicians in prescribing opioids safely and effectively, growing awareness of opioid-associated risks, and a public health imperative to address opioid overdose underscored the need for the guidance,” they wrote.

In a separate article in the JAMA Network, the guideline's authors said, “The number of people experiencing chronic pain is substantial, with U.S. prevalence estimated at 11.2% of the adult population. Patients should receive appropriate pain treatment based on careful considerations of the benefits and risks of treatment options.”

There are other signs of recognition that the guideline has been misinterpreted. For example, CDC Director Robert Redfield, MD, wrote in a letter to Health Professionals for Patients in Pain (HP3), “The CDC is working diligently to evaluate the impact of the guideline and clarify its recommendations to reduce unintended harm.”

The American Medical Association's House of Delegates passed a series of resolutions on the guideline at an interim meeting in November 2018.

“Physicians should not be subject to professional discipline, loss of board certification, loss of clinical privileges, criminal prosecution, civil liability, or other penalties or practice limitations solely for prescribing opioids at a quantitative level above the morphine milligram level thresholds found in the CDC guidelines for prescribing opioids,” the AMA delegates said.

There is also some light being shined on the issue in a report by The Pain Management Best Practices Inter-Agency Task Force.

“There is no one-size-fits-all approach when treating and managing patients with painful conditions. Individuals who live with pain are suffering and need compassionate, individualized and effective approaches to improving pain and clinical outcomes. This is a roadmap that is desperately needed to treat our nation’s pain crisis,” said Vanila Singh, MD, task force chair and chief medical officer of the HHS Office of the Assistant Secretary for Health.

As the opioid odyssey continues, there are signs that the visible few are beginning to be heard. This is an important step to helping the invisible millions with chronic pain receive the care they deserve.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find him on Twitter: @LynnRWebsterMD.

The information in this column 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.

Winning My Disability Case

By Mia Maysack, PNN Columnist

Never had I ever sent a thank you note to a judicial official. Not until I learned, after a four-year long process, that my disability case has been approved.  

So I write this teary-eyed, realizing I can now look into getting an oxygen tank for my cluster headaches, as the ability to obtain one through regular insurance was denied multiple times. I can also implement regular massages into my pain management plan, which might sound luxurious but for me is more a matter of physical functionality.

This decision will give me bits and pieces of my life back. The money will be extraordinarily helpful, a lifesaver really.   

I have chosen to no longer feel anything negative about deciding to pursue my case. Perhaps I don't deserve it as much as the next person or maybe I am too young or able bodied at times to even have filed. 

I pursued my claim only as a last resort, holding onto my identity as a worker and employee for dear life — and for far longer than what was in my best interest.

There's no question that part of what heightened my ailments is the fact that I pushed myself too far for a very long time. But having already been so used to daily head pain, I kept my head up by remaining busy and distracted on other things. That’s how I survived.

I also attempted countless career paths to accommodate my illnesses, including but not limited to working part-time, shortening shifts, changing job titles and even accepting positions I was overqualified for because being a part of the workforce has always been a value of mine.  

I've been fired, had hours cut to the point of being forced to quit, experienced pain induced panic attacks and frequently needed to leave work -- unfortunately not with fair warning or adequate notice to my employer. This resulted in judgement and discrimination, despite never being offered accommodations. Nor were there efforts to follow the detailed instructions of my care team by anyone other than me.

So it made the most sense to represent myself at my disability hearing,  as I am my own best expert.  

Applying for disability is extremely strenuous, tiresome and at times very frustrating. Between jumping through the insurance hoops as they try their best to justify not covering what is needed, maintaining numerous appointments, and balancing all the paperwork on top of being chronically ill and in pain. It is no exaggeration to say the disability process is a full-time job.   

Then there's the potential for added hurt when met with the assumption you could just be lazy, exaggerating or are perhaps flat out lying, because it's undeniable that the system has indeed been used and abused. 

To finally have been granted an opportunity for a face-to-face in-person hearing was a gift. It provided the opportunity for me to make my case real. I felt empowered to fully exercise my rights.

I’m also thankful to have crossed paths with someone who I considered to be a fair judge. They corresponded with a vocational expert, treated me with respect (even after I turned down the final chance to have a lawyer represent me), and took all evidence into thoughtful consideration, including the neurology report and testimony of a witness who accompanied me.  

I share this to serve as an illustration of what it's like to travel down this road. It took a lot of detours and led to quite a few dead ends, but to put a face on the “invisibility” that millions of us live with and have it validated is another small step forward.   

Upon being dismissed, the clerk congratulated me and said something that will stick with me forever: "It's not that you weren't doing or wouldn't continue to do well in past endeavors but your calling is higher."

We can find meaning to our lives despite all the rerouting. Sometimes we're even able to build an entirely new path.

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

The information in this column 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.

Outcomes Matter When Opioids Are Tapered

By Roger Chriss, PNN Columnist

The drug overdose crisis has led to a rethinking of pain management. Prescription opioids are now seen as risky medications with potentially serious side effects, including addiction and overdose. As a result, there is an increasing push to discontinue or taper patients on long-term opioid therapy.

A recent op/ed in the Annals of Internal Medicine by physicians Roger Chou, Jane Ballantyne and Anna Lembke claims there is “little benefit” from long-term opioid use and “many patients” would benefit from tapering. They even suggest that the use of addiction treatment drugs such as Suboxone should be expanded to include pain patients dependent on opioids.

“Evidence indicates that long-term opioid therapy confers little benefit versus nonopioid therapy, particularly for function. Opioid use disorder (OUD) occurs in a subset of patients, and quality of life may be adversely affected despite perceived pain benefits,” they wrote.

“We argue that achieving effective, safe, and compassionate tapers requires implementing and incentivizing tapering protocols, recognizing prescription opioid dependence as a distinct clinical condition necessitating treatment, and expanding the indication for buprenorphine formulations approved for OUD to include prescription opioid dependence.”

It should be noted Chou is one of the co-authors of the CDC’s controversial opioid prescribing guideline, while Ballantyne and Lembke are board members of the anti-opioid activist group Physicians for Responsible Opioid Prescribing (PROP). Ballantyne, who is president of PROP, was part of the “core expert group” that advised the CDC when it was drafting its guideline.

What Happens to Tapered Patients?

The goal of improving patient safety is admirable. However, there is relatively little data on what happens to patients during tapering or after opioids are discontinued. The evidence is mixed at best.

A 2018 review in Pain Medicine of 20 studies involving over 2,100 chronic pain patients found that most patients had less pain or the same amount of pain when tapering was completed. But the studies were not controlled and the evidence was of marginal quality, with large amounts of data missing.

A 2019 study in the journal Pain evaluated outcomes in 49 former opioid users with chronic pain. The findings showed that about half the patients reported their pain to be better or the same after stopping opioids, while the other half reported their pain was worse.

There are risks associated with tapering that also need to be considered, such as uncontrolled pain, suicide, overdose and early death. The tapering process itself can be extremely challenging and patient outcomes after discontinuation are not necessarily positive.

A recent study in the Journal of General Internal Medicine looked at what happened to chronic pain patients being treated at a large urban healthcare system in the year after they were tapered.

For about 5 percent of patients, “termination of care” was the primary outcome – a vague category that means there was no record of them seeking further treatment. Some of those patients may have miraculously gotten better and required no healthcare. And some may have died.

“These findings invite caution and demonstrate the need to fully understand the risks and benefits of opioid tapers,” the authors warned.

Another study in the same journal is also concerning. Researchers at the University of Washington followed 572 patients who were treated with opioids at a Seattle pain clinic. About 20 percent of the patients died, a high mortality rate, but the death rate was even higher for patients who were tapered. Seventeen of them died from a definite or possible overdose.

“In this cohort of patients prescribed COT (chronic opioid therapy) for chronic pain, mortality was high. Discontinuation of COT did not reduce risk of death and was associated with increased risk of overdose death,” the authors concluded.

"We are worried by these results, because they suggest that the policy recommendations intended to make opioid prescribing safer are not working as intended," said lead author Jocelyn James, assistant professor of general internal medicine at the University of Washington School of Medicine. "We have to make sure we develop systems to protect patients."

In other words, opioid discontinuation does not necessarily lead to better outcomes, as Chou, Ballantyne and Lembke suggest. The blind push to taper patients at all costs to reduce opioid prescribing can have tragic consequences — which no one seems to be tracking.

“Crucially, today’s opioid prescribing metrics take no count of whether the patient lives or dies. Data from two recent studies strongly suggest it is time to start counting. The sooner quality standards are revised in favor of genuine patient protection, the better,” says Stefan Kertesz, MD, an Alabama physician and researcher.

Outcomes matter. And they need to be reasonable for the patient. A person with a self-limiting condition like low back pain may well benefit from opioid discontinuation. But some patients with more chronic conditions do not get better, and their needs cannot go ignored.

The Canadian Psychological Association emphasizes caution and patient safety in a recent position paper on the opioid crisis:  “Tapering must always be done gradually under physician or nurse practitioner supervision, with the patient's consent, and with ongoing support and monitoring of pain and functioning, as well as management of withdrawal symptoms."

The use of prescription opioids should always take patient risks and benefits into consideration. It also requires knowing about outcomes when taking patients off opioids. At present there is too much interest in numbers and too little interest in people.

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.

Enough Is Enough!

By David Eaton, Guest Columnist

Back in 2007, when my back pain became so severe that it was affecting my ability to work, I wrote an email to my boss using the subject line, "Enough is Enough!"

My pain level was hindering my ability to concentrate so much that, despite having a college education, I had to ask a friend how to spell the word "place." I could not figure out why "plase" sounded right but looked so wrong.  

The previous night, I could not even read a lesson to the teenagers at my church, despite the fact that I had taught the exact same lesson twice before -- and I was the one who wrote it.

Pain medication and procedures such as epidural nerve blocks and RFA treatments kept my pain under control for most of the past decade, until the CDC introduced its opioid prescribing guideline. As a result, I have been bedridden for most of the past month.

My pain issues began 40 years ago in my senior year of high school, when I was in a motor vehicle accident which resulted in me being thrown through the rear window of the car and landing 35 feet away on my head. The impact caused a compression fracture at the base of my neck and damage to multiple discs as well.

Within a few years, it became necessary for a neurosurgeon to cut a section out of both of the occipital nerves going up the back of my neck and into my scalp as a long-term treatment for the massive headaches I was having.

Unfortunately, the nerves grew back together after 35 years and the migraine headaches have returned --- along with nerve related pain caused by disc degeneration and arthritis.

DAVID EATON

Another auto accident 25 years ago caused my knees to slam into the hard dash of my minivan. During the ambulance ride to the hospital, the paramedics told me that I would likely be using a cane within 5 years and in a wheelchair within a decade. They were not far off. I managed to go 13 years before the pain in my knees became so severe that I could no longer climb in and out of my car or walk into the office.

Now, after being on disability for a decade, I am unable to straighten my legs. Attempting to stand, much less walk a step or two, is both excruciating and impossible.

And, if you order right now, we will include a free congenital birth defect that resulted in severe stenosis in my lower back. This was only magnified when I suffered a slipped disc 12 years ago.

It was at that time that I was referred to a pain clinic, which used a combination of medications and procedures to control my pain. Those treatments were very successful. While they did not eliminate the pain, they were at least able to keep it at a manageable level until the CDC stuck their nose between my doctor and myself.

Their guideline has resulted in some pain clinics not prescribing anything stronger than what you can get over the counter. While I am sure that part of the clinics’ decision making included the fact that they make profits off of additional office visits, as well as surgical procedures, the end result is the same: Patients are left hurting and becoming depressed to the point of suicide.  

My doctors regularly question me about suicidal thoughts, as well as a list of other mandatory questions any time I even hint at being depressed. The truth is that I am depressed and have been for quite some time, but even more so now that the pain is so much more severe.

The CDC guideline, a knee-jerk reaction to the opioid epidemic, has resulted in my daily use of extended release opioids to be cut in half. This led to a doubling of not just the amount, but the severity of my pain.

To make matters worse, a change in insurance coverage resulted in me having to be treated by a different pain clinic. The new doctor took me completely off anti-inflammatory medication for the arthritis in my back, neck and knees. The resulting pain wakes me up at the slightest movement. The pain in my knees is so excruciating when I attempt to get from my bed or recliner and into my power chair for a trip to the restroom, that that I put it off as long as I can. 

In addition, the sensory nerves in my legs are now so inflamed that I feel as if someone is stabbing me to the bone or trying to pry off one of my toenails.  I feel as if someone has poured boiling hot coffee down my legs, giving me severe burns on my thighs.

Like I said, enough is enough! I have more pain than I can handle. Something has to give and I am praying that it is a relaxation of the CDC guideline. Maybe it would help if I could get a medical transport van to carry me to the CDC so I could pour a pot of hot coffee down some guy's pants and then check the severity of his burns by repeatedly stabbing him with a meat thermometer.

David Eaton resides outside of Atlanta, GA with his wife of 36 years. He has 2 grown sons, both married, and 4 beautiful grandkids. Prior to becoming disabled, David worked in the IT field. He was also heavily involved in his church, where he taught Sunday school and served as Youth Minister.

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

The information in this column 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.

A Pained Life: Stop Terrorizing Doctors

By Carol Levy, PNN Columnist

When I visit chronic pain support groups online, it is almost astounding how often posters turn to talking about the “opioid crisis,” no matter the subject of the initial post. One person wrote that she lives in a town where there is not one doctor who will prescribe opioids, no matter what the diagnosis.

I see comments like, “My doctor won't prescribe them for me anymore even though they were helping,” or “My doctor reduced what I was taking without any effort to ask how I was doing.”

Often they’ll add, “My doctor said he has changed his prescribing practices because of the CDC guidelines.”

Human Rights Watch recommended last year that the CDC guideline be revised because too many doctors were using it as an excuse to abruptly cutoff or taper patients.

“Even when medical providers understood that the Guideline was voluntary, they believed they risked punishment or unwanted attention from law enforcement agencies or state medical boards if they maintained patients at high doses,” Human Rights Watch found.

How does this fear, engendered by political institutions like the CDC and DEA, not fall under the definition of terrorism? This is how Miriam-Webster defines terrorism: 

“The unlawful use or threat of violence especially against the state or the public as a politically motivated means of attack or coercion.”

Granted, the guidelines are not unlawful, but they have had the exact effect of being coercive on many in the medical community. I would also contend that the threat of being arrested and going to prison is a threat of violence.

The guidelines were engendered by the public outcry and governmental concern over the level of opioid overdoses and deaths. The CDC said the guidelines are voluntary, but to many doctors, pharmacies and insurance companies they are enshrined in stone as commandments. They were promulgated as a political response. They were not based on the medical model or the realities of patients in pain.

The point of terrorism is to instill fear. Terrorize one and others will fall in line. The guidelines have had exactly that effect. Accuse one doctor of overprescribing or running a pill mill – even if no charges are actually filed -- and other doctors will change their practices by reducing or refusing to prescribe opioids out of fear of being falsely accused, even when they know doing so will hurt their patients.

And how are patients hurt? Attorney Mark Rothstein, Director of the Institute for Bioethics at the University of Louisville School of Medicine, answers that question.

“Many physicians who previously prescribed opioids now have reduced or discontinued such prescriptions, even for established patients with chronic pain. In some cases, the change in policy was adopted literally overnight,” Rothstein wrote in the American Journal of Public Health.

“With no alternatives for pain control... and the physical and mental pressure of unremitting pain, many patients turned to illicit drugs, especially heroin. The result has been greater addiction, more deaths from overdoses, and an increase in cases of HIV/AIDS and hepatitis from contaminated syringes.”

It is long past time to end what has been interpreted as policy, a policy that hurts patients and the community. It’s time for the terrorism to stop.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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

Does Chronic Pain Affect Memory?

By Ann Marie Gaudon, PNN Columnist

Pain is a complex experience. It not only affects us biologically, but we also experience it cognitively and emotionally. Does it affect our memory? You bet it does.

Chronic pain patients often complain of memory problems and there are numerous studies which confirm these challenges are indeed a reality.

Twenty-four studies evaluating working memory (WM) and/or long-term memory (LTM) in chronic pain groups and control groups were reviewed last year by French researchers. WM was defined as the processing and manipulation of information within a short period of time (a few seconds), while LTM involved the “storage” of knowledge and memories over a long period of time.

Concentration and memory deficits on a daily basis were the most frequently reported cognitive difficulties. Memory complaints included forgetfulness and problems performing everyday tasks and conversations.

Emotional distress common to pain patients, such as depression, anxiety and rumination (the inability to divert attention away from pain), was also found to play an important role in memory difficulties.

One study compared two groups of pain patients who had minor or major memory complaints. Between the two, no significant differences were found with regard to age, gender, education level, marital status, medication use, long-term pain or pain intensity.

However, patients in the major memory complaint group suffered from emotional distress to a significantly greater degree. They also reported a lack of family support and discontent with their social and sexual lives. These were noted as additional daily sources of suffering for this group.

Adding to potential negative effects on memory were comorbidities which many pain syndromes share. Conditions such as depression, anxiety, sleep disturbances, and chronic fatigue could alone or combined affect memory. A major concern expressed was the need to disentangle pain-related cognitive effects from those resulting from these comorbidities.

Medications and Memory

The review really became interesting when it came to medication, because researchers found contradictory results. One European study reported that opioids exerted a negative effect on working memory -- finding a clear association between higher levels of analgesics and perceived memory dysfunction in chronic back pain patients. Some studies confirmed that medication can have a negative effect on memory, but others showed improvements in memory following analgesic treatment. That suggests that effective pain relief may also reverse pain-induced memory impairment.

The researchers concluded it was unclear whether analgesic medications are beneficial or detrimental, because both scenarios were reported.

Age was also identified as an important factor in the relationship between chronic pain and memory, but not in the way you may think. Surprisingly, it was shown that an increase in age did not additionally affect memory performance.

One study reported that gender and age significantly affected memory decline in those suffering from chronic migraine headaches. Cognitive decline in migraineurs was greater among younger individuals, and females showed greater decline during headache intervals than males. It was acknowledged that gender as a factor in pain-related experience is poorly investigated.

Like all reviews, this one has its limitations. There was a “large heterogeneity” of tests within the 24 studies. This diversity of tests did not allow for a suggestion of which memory processes were altered by chronic pain itself. The study populations were also heterogeneous regarding pain etiologies and an assessment of the intensity of pain was not performed.

Studies which included a mix of chronic pain disorders did not provide data on whether specific memory impairments were more frequently observed in specific disorders. The authors suggest there is a need for comparative studies across pain-related disorders in order to determine whether impairments are pain-related or a consequence of other pathophysiological features.

These numerous studies confirmed the memory decline that is often reported by chronic pain patients. Even if these effects are mild, the impact on quality of life could be substantial as they may indeed worsen suffering including depression, anxiety, and limitations on activity.

Researchers suggested that examining memory function should be part of the clinical assessment of chronic pain patients. The spectrum of cognitive difficulties must become acknowledged and understood in order to find ways to overcome them.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

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.

Is Your Pain Medication Effective or Was It Placebo Effect?

By Dr. Lynn Webster, PNN Columnist

Most of us have been prescribed a medicine at some time in our lives. And if we got better, we probably assumed it was because the medication was effective.

However, this may not have been completely true. A positive result following the use of a medication may have little to do with the drug.

If you're a M*A*S*H fan, you may have seen an episode called "Major Topper." In that show, Colonel Potter suggests they treat people in pain with a placebo because there is a morphine shortage — and it works. Did that mean their pain wasn’t real?

Placebos Work So Well They Can Fool Researchers

One of the greatest challenges in evaluating the efficacy of medical treatments is to minimize what is known as the placebo effect. The benefit provided by a treatment during clinical trials may appear to be significant. However, the treatment may fail to be approved by the FDA if the benefits for patients who receive a placebo are too similar to those who receive active treatment.

Drug approval requires that active treatment results are meaningful and differ statistically from placebo results, even though both may provide similar outcomes when compared to a baseline. 

I study drugs for their potential to be abused— what the FDA calls a Human Abuse Potential (HAP) study. People who participate in HAP studies must admit they recreationally use the class of drug which is undergoing evaluation, and must report a strong preference for the drug when compared to a placebo.

Most people would be surprised to learn that as many as 50% of the test subjects who commonly use a drug recreationally cannot adequately differentiate between the active drug and the placebo. Even more surprising is that one in five subjects report a much greater preference or “getting high" experience with the placebo than with the active drug.

There are several reasons for this. It could be that they don’t realize researchers know which drug they received and in what order. They are simply hoping to guess correctly because they want to participate in the study. Or the subjects may be anticipating an effect that they want (to get high) and that anticipation creates the effect in the reward center of their brain without even using an active drug.

This effect is not limited to drugs. As a principal investigator in a study, I surgically implanted wires at the base of the occiput (the skull) to stimulate occipital nerves in an attempt to prevent or treat migraine headaches. Although all subjects underwent the operation and were implanted with the wires, only half received active stimulation. The other half were programmed with a sham pattern of stimulation.

When the study was unblinded, we discovered that almost everyone in both groups (active and placebo) derived remarkable, but similar, relief from the therapy.

We concluded it was their expectation that an invasive procedure would be therapeutic that provided the positive outcome. Unfortunately, the positive results of both treatment and placebo meant the new procedure could not be approved on the basis of our testing.

Placebos Work Even When People Know About Them

Ted Kaptchuk, a Harvard Medical School professor of medicine, is the director of the Program in Placebo Studies at the Beth Israel Deaconess Medical Center. In a recent episode of NPR's "Hidden Brain" podcast, Kaptchuk recounts similar results when testing the placebo effect.

However, his research added a new twist. Kaptchuk wanted to see what would happen if he used "radical honesty" to determine the potential of the placebo effect. Instead of tricking patients into believing they may receive an actual treatment instead of a placebo, Kaptchuk told his subjects they would receive a placebo. In other words, no actual drug would be administered to subjects and they were all aware of that.

Surprisingly, he found that a placebo could still work. "Hidden Brain" host Shankar Vedantam also talked to Linda Bonanno, who participated in Kaptchuk's study. Bonanno explained that Kaptchuk gave her a placebo to treat her irritable bowel syndrome and it eased the agonizing pain she had been living with for years.

The pain did not return until Kaptchuk stopped "prescribing" the placebo. For Bonanno, what seemed to help the most was the trusting relationship she had with Kaptchuk. The warmth and caring of her health care provider may have been enough to mitigate her pain.

As we know, pain isn't just a physical experience. It is a complex emotional experience that has psychological, social and spiritual elements. If a doctor's empathy, warmth, listening and caring can ease a patient's pain, that shouldn’t call into question whether the patient's pain was real. It simply makes the case that a trusting relationship with a healthcare provider is as important for successful treatment as the medication or procedure itself.  

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth” and co-producer of the documentary, “It Hurts Until You Die.” You can find him on Twitter: @LynnRWebsterMD.

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.

Why Getting a Diagnosis Matters

By Crystal Lindell, PNN Columnist

For me, finding out I had a genetic condition with no cure was, strangely, liberating. 

When I walked out of the doctor’s office, I went to lunch at Chipotle with my mom to celebrate. We splurged for the guac. 

No, I wasn’t ever going to get better — but at least I wasn’t crazy. 

It took about five years of debilitating chronic pain in my ribs, two trips to the Mayo Clinic, appointments at three different university hospitals, and countless specialists before I was finally diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) in March 2018. 

And you know how it happened? It wasn’t some magical doctor who finally figured it out all out. No. It was my readers. A few of them emailed me suggesting I check into it, so I asked my doctor about it. He referred me to a pain specialist who diagnosed me within a month. 

I’m not going to pretend that finding out I had hEDS was all just a pile of happy pills though. I went through an extremely rough month of depression and grief as I worked to grapple with everything that came with that life-long diagnosis. There’s no cure. My body will probably just get worse over the years. And having children would be extremely risky. 

It was a loss, for sure, but it also was a gain in so many ways to finally know what I was fighting — and for others to know as well. It felt like it went from, “She’s making it all up and probably just wants pain meds,” to “She’s here legitimately,” in my medical chart. That alone was life changing. 

And based on the Facebook and Reddit patient groups I follow, I’m not alone in any of this. Hundreds, if not thousands, of people seem to post about their search for a diagnosis, and the validation they feel once they’ve gotten it. 

Knowing your enemy’s name makes it much easier to do battle. 

And yet, doctors seem to be so far behind on this. 

Here are some common myths I’ve heard both from my own doctors, and via patient stories. 

Myth: A diagnosis won’t change how the symptoms are treated. 

Fact: This simply isn’t true. For me, hEDS means I can react differently to medications and treatments. For example, I should avoid chiropractors and only see specially trained physical therapists, because if I don't, I could be seriously injured. Not to mention the fact that it also means I have additional risks that can be regularly tested for, such as issues with my heart. And the risks related to surgery also change. Be skeptical anytime someone tries to tell you that more information is a bad thing.  

Myth: A diagnosis will increase insurance rates. 

Fact: The U.S. requires insurance companies to cover pre-existing conditions now, so this simply isn’t true. 

Myth: Seeking a diagnosis means you just want to spend your days blaming everything on your condition. 

Fact: Trust me, nobody “wants” to blame everything on a genetic condition. But if a genetic condition is to blame, then it’s not crazy to connect the dots. A diagnosis also helps you see dots you didn’t even know where there.

Myth: A diagnosis doesn’t change anything.

Fact:  A diagnosis does so much more than get noted in your medical history. It also can help you apply for programs like Social Security Disability and medical marijuana cards. And maybe even more importantly, it can help you explain yourself to friends, colleagues and family.

When you show up late for a meeting because “your ribs hurt,” people give you the side-eye and then leap into a diatribe about how their back hurts sometimes and they still manage to get there on time. But if you show up late and explain that you have a rare disease called EDS, they usually rush to offer sympathy and understanding. 

So what do doctors mean when they try to tell you that a diagnosis doesn’t matter? They mean, it doesn’t matter to them. It’s similar to when they say a surgery is going to be easy, they mean it’s going to be easy for them.

But we aren’t living for them. We’re living for us. So keep fighting the good fight. Keep insisting that you get the right diagnosis. And know thy enemy.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile Ehlers-Danlos syndrome. 

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

Johnson & Johnson Verdict Will Harm Chronic Pain Patients

By Barby Ingle, PNN Columnist

This week an Oklahoma judge ruled that Johnson & Johnson helped fuel the state’s opioid crisis and ordered the company to pay $572 million in damages.

I watched the entire 7 weeks of the Oklahoma trial and hoped that Judge Thad Balkman would get this right. I do not believe that he did. Johnson & Johnson may have the funds available to pay such a big penalty, but what about the healthcare providers, pharmacies, insurers, FDA, DEA and drug abusers who also played a role in causing the crisis?

This verdict shows that pain patients in America are once again being overlooked for the lives of drug addicts. Both problems need to be addressed: addiction and chronic pain.

I am a chronic pain patient who has been mistreated, undertreated, overtreated and misdiagnosed over the years. Do I think the $572 million is going to make a difference in my care or other pain patients? No, I don’t. We have already seen patients commit suicide because they were taken off opioid medications that were helping them cope with life and manage their pain.

The insurance companies won’t cover the other treatments and for some patients who have tried those treatments and failed, opioids were the only thing giving them quality of life.

Now we see a rise in the suicide rate and overdoses are still high. And where is the problem really coming from? Street drugs.

How is a manufacturer of opioids held liable, but people who chose to abuse drugs are not held accountable? Is it because they can’t make money off poor people?

The Oklahoma verdict is not holding the right people accountable by any reasonable standard. It distorts the public nuisance law beyond recognition and will take away more options and choices from pain patients. This is only the start. Nearly 2,000 other opioid lawsuits are awaiting trial.

Why force these pharmaceutical companies into settlements? Why force an industry that saves millions of lives to do this? We need the industry to keep working on treatments. Less than 5% of the 7,000 rare diseases have any treatment options available. Are these lives less valuable than addicts’ lives? We need to stop forsaking one life for another.

I for one hope that Johnson & Johnson appeals for the sake of the pain community and for the sake of all who need pain medications -- be it for an acute situation such as kidney stones, a shattered pelvis or a chronic illness such as Reflex Sympathetic Dystrophy, arachnoiditis, sickle cell or lupus.

I don’t believe that the pharmaceutical industry started, fueled or conspired to create the largest public health crisis of our time. I don’t believe there is an opioid epidemic. Addiction does affect millions of people but in many cases the help they need has not been provided. Billions of dollars in federal funding, including grants from President Trump’s opioid initiatives, haven’t been fully set up or spent to make a difference.

I believe it's up to the providers and pharmacists to tell us about the risks associated with opioids. They do in most cases. We as chronic pain patients want to have all options on the table. It's going to take a multi-modal approach that will have to start with human behavior and people being responsible for their own actions.

Insurance companies are already using tactics such as step therapy, prior authorization and stall tactics to prevent people from getting proper treatment. This is being done to both the addiction and chronic pain communities. It saves insurers millions of dollars, yet they are not being held accountable for care that is being denied.

For those in pain it's important to have opioids available and it’s not a simple matter of pharmaceutical companies being all bad and responsible for everything that happens to society.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.  

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 Are Collateral Damage of the Opioid Crisis

By Diana Franklin, Guest Columnist

I have been watching the news a lot lately. It seems like much of the coverage is devoted to the opioid crisis, and rightfully so. But I feel it’s a little one-sided.

I fully understand the issue with illegal drugs, doctors overprescribing, pharmaceutical companies flooding markets with powerful pills, and how all of that is a very big problem. I hate that so many are addicted and something needs to be done to stop it.

However, I also know that there are law abiding citizens in serious, legitimate pain that are getting swept up in the chaos and suffering because of it. These people feel like they're being punished and forgotten about. I know this, because I am one of them.

I had severe scoliosis as a kid. When I was 12, I was told it was progressing so quickly that I could end up bedridden or possibly dead by the age of 21. I had to have surgery to straighten and fuse a large portion of my spine with metal rods. Luckily, the surgery was a success.

When I was in my 30’s, one of the discs that hadn't been fused in my lower back slipped. A doctor did two laminectomies, where they shaved down the back side of the vertebrae. A year later, I had another surgery on the cervical spine in my neck.

These surgeries may have fixed the problem with the discs, but unfortunately the damage was done and I was left with severe nerve damage and in constant pain.

DIANA FRANKLIN

I saw a pain management specialist and tried several different pain medications until I found something that helped. I was still very limited in what I could do, but I was at least able to get out of the house on occasion, though I was unable to work and had to go on disability.

While battling these health issues, I lost my husband and had to find a way to survive with my two sons. This was made even more difficult when my pain started getting worse. I got an MRI which revealed that I also have degenerative disc disease. There is very little space between the few discs in my lower back that aren't fused, meaning that bone is rubbing on bone, crushing the nerves and causing tremendous pain.

With oxycodone, I was still in a great deal of pain, but as long as I didn't get up and do too much, I could push through the day. I always took less than needed and tried hard to manage the pain any other way before I took my pills. I had regular drug tests, per my doctor’s protocol, to ensure that I wasn't taking too much.

I have seen this doctor for 20 years and he always went above and beyond, with all of his patients, to ensure that he only gave them what they need to control their pain without becoming addicted.

Recently, the government stopped allowing my doctor to prescribe any opioids, leaving many of his patients, including myself, without any pain medication at all. Due to the pain and nerve damage, I have trouble walking, my hands and arms will hurt and swell up, and my back feels like it's being crushed. I have severe migraines and often end up crying due to the pain.

I can hardly get up to go across the room without help and every step causes extreme pain. I can't think straight and wind up exhausted because every ounce of energy I have goes to fighting the pain.

Because there is so much damage to my spine, managing the pain is my only real option. The few other options I have aren't covered by insurance and there’s no guarantee that they will help. They could possibly make my situation worse.

My life has gone from enjoying my kids and young grandkids to being essentially trapped in my recliner, not knowing how much longer I can live with the pain.

I have been strongly against illegal drugs all my life. I believe that the government should do what it can to make sure criminals aren't getting their hands on these medications and crackdown on doctors that overprescribe them.

However, by taking pain medication away from everyone, they have made me collateral damage. Patients like me, even those with cancer, are being left without any pain medication at all. Some have committed suicide because they just can't handle the pain.

I am trying hard to fight against thoughts like that, but it is difficult when every moment is spent in excruciating pain. Something has to be done to allow doctors to prescribe pain medicine to those who truly need it, without fear of government prosecution. Put in strict regulations, drug testing and criteria that people have to meet, so that those in legitimate pain can still be given the lifesaving pain relief that they desperately need.

I don't have all the answers, but I know that something needs to be done and we need to be heard. Please, don't sit by as so many suffer. People like me fight our battles every day just to survive, but it gets harder every second that we're in blinding, unthinkable pain.

People talk all the time about the people who die in overdoses. That is indeed a tragedy, but what no one wants to talk about are the people dying simply because they can't cope with the amount of pain that they're in. We need a solution and we need it now! More than anything, we need a loud voice to be heard above all the other shouting that seems to be surrounding this issue.

Please help me get the word out, not just about my story, but so many other stories out there of people in pain. I want as many people as possible, especially lawmakers, to see this and understand what we go through. Please like and share with everyone you can.

Diana Franklin lives in Texas.

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.

Online Censorship of Health Information Is Authoritarianism

By A. Rahman Ford, PNN columnist

Critics of stem cell therapy have taken their censorship campaign to another frightening and paternalistic step up the authoritarian ladder. Not only does it threaten freedom of speech, freedom of association and freedom of health, but now it’s targeting poor people.

The campaign to stop people from accessing stem cell therapy (SCT) has been building for some time. First there was fearmongering to scare patients away from SCT, followed by a push to have regulatory agencies increase enforcement.  Then came a call for social media platforms like YouTube to censor patient testimonials about the benefits of SCT.

Now, in a disturbing turn, critics are pressuring fundraising platforms like GoFundMe to purge campaigns that seek to raise funds for SCT.

In a recent op/ed in the BBC’s Future, London-based neurologist Dr. Jules Montague argues that crowdfunding sites like GoFundMe need to crackdown on patients seeking to raise money for stem cell treatments. Montague says their testimonials omit the “unfounded hype” and potential risks associated with SCT. These “bad actors,” according to Montague, should be banned to “halt the spread of misinformation.”

To propose that crowdfunding sites be tasked with choosing winners and losers in the marketplace of ideas, and to impose quasi-criminal sanctions on poor patients is to enter a decidedly dictatorial dimension. “Bad actor” is a legal term of art, and should be left to the jurisdiction of a court of law or other legislatively-authorized tribunal. That’s how things work in a democracy.

On the other hand, authoritarian regimes censor whatever speech they see fit, arbitrarily and without explanation. As it pertains to crowdfunding sites, what we absolutely do not need is unelected and unappointed “experts’” selling misplaced fears.

The question that should be asked is why do the SCT critics fear the agency of the people? Is the notion that people can make their own medical decisions – and accept the risks of those decisions – without “expert” stewardship, consultation or approval such a terrifying prospect?

Ultimately, this “purge and censor” line of argument represents a slippery slope that is distinctly anti-democratic. And at the bottom of the slope, are piled the bodies of the sick, whose desperation is fueled by the abject failures of mainstream medicine.

Equally disturbing is the fact that stem cell censorship on fundraising platforms would be a clear and unmistakable attack on the poor. Poor people are the ones who need to raise money, not the wealthy. The average person doesn’t have the finances of a star athlete like Max Scherzer or a celebrity actress like Selma Blair to get stem cell treatment. Instead, they have to rely on the generosity of others, a generosity that crowdfunding sites facilitate. To censor SCT fundraising is to not only censor a voice, but a livelihood, and maybe even a life itself. Poor people should not be punished for being poor.

Does Dr. Montague really expect GoFundMe and other sites to establish their own internal ethics boards and become the online sentinels of poor people’s health? There is no defensible or rational justification for preventing chronically ill poor people from raising the money they need to save their own lives.

Online Censorship Increasing

Unfortunately, online censorship of alternative health information is not new. In fact, it’s increasing. Facebook recently deleted dozens of alternative health pages without any notice or explanation. Some, such as Natural Cures Not Medicine and Just Natural Medicine, had millions of followers.

GreenMedInfo was kicked off Pinterest for violating its “misinformation policy” which bans “false cures” for chronic illnesses. And who helps Pinterest determine what health advice is false?

“We rely on information from nationally and internationally recognized institutions, including the CDC and WHO, to help us determine if content violates these guidelines,” Pinterest explained in an email.

Recent changes to Google’s Broad Core Algorithms have also suppressed search results for alternative medical information. As a consequence, hundreds of health websites have experienced drastic drops in traffic, including Pain News Network. One website, owned by alternative health advocate Dr. Joseph Mercola, lost about 99% of its traffic.

“Big Tech has joined the movement, bringing in a global concentration of wealth to eliminate competition and critical voices,” Mercola warned. “This year, we’ve seen an unprecedented push to implement censorship across all online platforms, making it increasingly difficult to obtain and share crucial information about health topics.”

“We’ve seen an unprecedented push to implement censorship across all online platforms, making it increasingly difficult to obtain and share crucial information about health topics.”

— Dr. Joseph Mercola

Even Wikipedia, which relies on open source editing for its content, has succumbed to the “deletionism” of alternative health information.

“We believe that organised skeptic groups are actively targeting Wikipedia articles that promote natural, non-drug therapies with which they disagree,” says the Alliance for Natural Health. “The new trick of these editors is to rewrite or entirely remove pertinent information from such articles or, worse still, delete entire articles altogether.”

It now appears that stem cell therapy is the next hooded subject to be escorted into the Star Chamber of deletionism. The call for fundraising censorship is distinctly ant-human, and denies the most essential and primordial of human instincts – to assist a fellow human being in their time of need.

It is not the place of GoFundMe or any other fundraising site to police people’s medical choices. GoFundMe, your core principles are turning “compassion into action” and the sharing of people’s stories “far and wide.” Please do not capitulate to the SCT bullies.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

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