A Day in the Life of a Chronic Pain Sufferer

By Katie Burge, Guest Columnist

My day usually begins around 3 a.m., whether I want it to or not.  No matter what time I went to bed or how tired I am, I wake up in those pre-dawn hours, overwhelmed by excruciating pain and trembling from a panic attack caused by the pain. I wake up because I hurt too bad to stay asleep.

Don't get me wrong. I'm happy enough just to wake up at all - but what I wouldn't give some time to actually get a good night's sleep.

I grab a cup of coffee and debate whether or not I can "afford" to take a pain pill that will give me some modicum of relief. I have to be extremely careful with my medication.  I can't just take a dose because I'm in agony and need it. I don't get enough to allow myself that luxury. My monthly prescription for pain medication allows me to survive semi-comfortably for just over half the month.

It feels like I'm on an evil roller coaster ride, where my pain levels off for 3 or 4 hours, then spikes exponentially over the next few hours until I can take another dose.

As my day progresses, I try to choose the optimum time to take my pain medication, depending on what I need (or attempt) to accomplish for the day.  I struggle to take a shower, do the dishes or fix something to eat. Some of my time is spent writing.

One of the most important things in my life right now is advocating for better treatment for all chronic pain patients. I would like to be physically able to go to the state capitol or even to Washington DC to lobby for more compassionate treatment and to convince the bureaucrats there that pain patients are not to blame for the "opioid epidemic."

But that will have to wait until I can get my own pain reliably controlled.

When I do sleep, I dream about being able to do theater again, travel somewhere other than to a doctor's appointment or to run -- do any of a hundred things I’d like to do if I could exist away from the recliner that I essentially live in. It's the only place where I can find some degree of comfort.

For the past 20 years I have been dealing with increasingly severe chronic pain from a plethora of conditions like degenerative disc disease, failed back syndrome, spinal stenosis, spondylolisthesis, osteoarthritis, myofascial pain syndrome and fibromyalgia.

Any one of these conditions can generate enough pain to make a grown man cry like a little girl.  Combined, they can transform a normally relaxing shower into a study in torture -- where the droplets of water hitting my skin feel like daggers.

KATIE BURGE

Over the years, I think I've tried every treatment offered by medical science, as well as many alternative treatments - anything that might have the potential to take my pain down a notch or two. Once, I even started studying medical texts, trying to gain enough of an understanding of the logistics of pain that I could design a visualization exercise that would help me control it.

I never wanted to end up taking opioids. The pain medication I take is what's known as a "short-acting" or "immediate release" opioid, a type of drug that's actually designed for temporary acute pain, not round-the-clock chronic pain like I have.

Unfortunately, doctors are afraid to use the extended release medications that were actually designed for continuous pain.  This is the result of legal and political pressure from politicians who think they can solve the opioid epidemic by torturing pain patients. Somehow, they believe they can keep recreational drug users from overdosing by denying pain sufferers the legitimate medical use of opioids.

Short-acting opioids offer pain relief for a period of about four hours.  I am expected to make it a full 8 hours inbetween doses. That's where the evil roller coaster comes in. I take my medication, which gives me up to 4 hours relief, and then the pain spikes over the next 4 hours — making me feel worse than I did to start with.

It's up and down, up and down all day long and it's exhausting! If I was allowed to take the medication as it was made to be taken (every 4 hours), it would afford me more enough pain control that I could build a more normal life for myself. Doctors used to say it was safer and better that way, but that was before they became so afraid.

When it starts getting dark each day, I can feel the panic rising in my chest because soon it will be time to sleep and that means more pain. The depression and shame tend to crop up when it gets dark as well. The depression comes from being so isolated. As a person in pain, you spend a lot of time alone.

The shame comes from just being in pain in the first place, as society seems to tell us that we should be able to control our pain mentally, without medical or pharmaceutical intervention.

This is my day... EVERYDAY.

It's starting to get dark now, and the panic is boiling up again.

Katie Burge lives in Mississippi.  

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.

Should Opioids Be Sold Over-The-Counter?

By Crystal Lindell, PNN Columnist

There are currently two opioid crises going on. Too many people are dying of overdoses and too many chronic pain patients are being denied the medications they need to function. 

I have a solution for both — make hydrocodone and other opioid medications available over-the-counter without a prescription.

Yes, I know the idea of adding more opioids to the overdose crisis sounds counter-intuitive. But hear me out, because this is the solution that both pain patients and illegal drug users should be fighting for.

In short, it would make it much easier for pain patients to treat their symptoms, while also providing a safe supply for those dealing with addiction.

But isn’t hydrocodone dangerous and addictive? Well yes, it is. But so is alcohol and so is tobacco. So let’s compare.

According to the CDC, cigarette smoking is responsible for more than 480,000 deaths annually in the United States, including more than 41,000 deaths resulting from secondhand smoke. As for alcohol, the CDC says it causes about 88,000 deaths per year.

How does that compare to hydrocodone? According to the DEA, of the 1,826 hydrocodone exposures reported to poison control centers in 2016, only two resulted in deaths. That’s right, two.

Another report by the CDC estimates there were 3,199 overdose deaths involving hydrocodone in 2016. But many of those deaths involved other drugs and we don’t know whether the pills were prescribed or not.  

Both estimates pale in comparison to the number of people dying from alcohol and tobacco.  

Yes, the number of deaths might go up if hydrocodone is sold over-the-counter. However, if you factor in how many lives we could save, we would come out far ahead.  

And you know what? The acetaminophen found in hydrocodone products like Vicodin could cause an overdose before the hydrocodone does.  

“The scientifically and medically accepted amount to produce a fatal overdose of hydrocodone is 90 mg. Thus, 18 (5mg) Vicodin pills can lead to an overdose,” explains an addiction recovery website.

“This already puts an individual far above the liver’s tolerance of acetaminophen at 5,400 mg, meaning an individual would experience two separate overdoses if they managed to consume this many pills.”  

Although opioid tolerance can greatly impact how much would be needed to cause an overdose, the fact remains that the acetaminophen might actually be the most dangerous part of the medication. The solution for that? Sell hydrocodone over-the-counter without the acetaminophen.   

Patients Turning to Street Drugs

How do we save lives by giving people more access to drugs? To answer that you have to understand how people are actually dying as a result of the opioid crisis.  

Here’s a hint: it’s not usually caused by hydrocodone. 

First, the misguided fight against the opioid epidemic has led to many doctors refusing to prescribe any opioid medications. Unfortunately, taking medications away from people who need them to function doesn’t somehow result in them magically fighting through the pain. Instead, it just pushes them to take more acetaminophen or some dangerous illegal drug that we’re trying to curb.  

When that happens, people are left to find illegal alternatives — and what they discover is that heroin and illicit fentanyl are actually cheaper than hydrocodone sold on the black market.  

Our system of prohibition is forcing pain patients and illegal drug users to turn to street drugs. We are doing something wrong when it’s easier and cheaper to take heroin or fentanyl than it is to take hydrocodone.  

Making hydrocodone over-the-counter would create a safe supply and would undoubtedly save a lot of lives. It would also have the added benefit of saving patients a lot of money on doctor visits.   

We are at a point when the war on drugs is doing more harm than good for everyone. It’s time for us to consider more radical solutions to these issues. And making hydrocodone available over-the-counter should be at the top of that list.  

Decriminalize Opioids

Thankfully, the country seems to be moving in this direction somewhat. Cannabis is being legalized recreationally, as everyone realizes how pointless marijuana prohibition is. And just this month, Democratic Presidential Candidate Andrew Yang announced his proposal to decriminalize opioids.  

“We need to decriminalize the possession and use of small amounts of opioids,” Yang says on his website. “Other countries, such as Portugal, have done so, and have seen treatment go up and drug deaths and addiction go down. When caught with a small quantity of any opioid, our justice system should err on the side of providing treatment.” 

No, Yang is not likely to win. And no, his proposal doesn’t go far enough. But it’s a start — and will hopefully start to shift the conversation.  

Is there anything we can do as patients to help this cause? Honestly, I believe there is. I constantly see pain patients and advocacy groups post disparaging comments about people who use drugs illegally. I understand why it’s easy to blame them for the crackdown on opioids. But they aren’t the ones who put the new regulations in place — for that you can blame the CDC, DEA and FDA.  

Instead of fighting illegal users, we should be trying to work with them as part of a common cause — decriminalization and legalization. It’s a fight we can all get behind.  We can post about that stance online and we can tell our loved ones why it’s important to us. We can also tell our elected officials. You can reach your federal representatives in the House here, and in the Senate here.

If we all take up this cause together, there is real hope we can make progress.  

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.

The New Norm for Chronic Pain Patients

By Rochelle Odell, PNN Columnist 

Come the new year, I will start my 28th year battling Complex Regional Pain Syndrome (CRPS). Like so many high impact pain patients, I have been experiencing a pain flare that isn't improving and prevents me from doing many tasks. I am praying it will get better and not become my new norm.  

I have been a palliative care patient for a couple of months now. Palliative care is not what many people think it is. My meds did not get increased and I still live at home. A home health RN visits me twice a week, takes my vital signs, asks how I am doing, how is my pain, and what doctor do I see next.  

I was evaluated this time last year for Transitional Care Management or TCM. It’s usually for patients getting out of the hospital and is short term -- only two to three months at the most. A medical doctor evaluated me and told me I was “high functioning” but needed assistance. High functioning? I have no help and only have me to depend on. I have to function to some degree just to survive. 

My RN tells me palliative care is meant to help patients be as comfortable as possible. They used to be able to give their patients pain meds, but now all they can give is Toradol, a non-steroidal anti-inflammatory drug, which does me no good because I am deathly allergic to NSAID's and aspirin. She is compassionate and caring and says what is happening to me and others in pain is "Just not right." I have to agree with her. 

Perhaps part of this new norm is reading so much negativity coming from our not so illustrious leaders in DC, along with blurbs from the CDC and the FDA. To me it appears to be getting worse as opposed to getting better.  

Is my increased pain clouding what I am reading? I don't believe so. Many of us suffering from high impact pain -- about 20 million Americans – are unable to get opioid medication. Even those suffering from life ending cancer are being turned away. That is nothing but plain cruelty. 

There is a core group of pain patients, probably numbering a few thousand, that is trying to change things. We call and write our elected officials and various government offices that have deemed it their duty to destroy our lives piece by piece.

Those that are physically able can attend a Don't Punish Pain Rally. There is another DPP rally coming up October 16. I have only been able to attend one rally. It's hard when one is in extreme pain and with limited funds to be able to travel to the rallies.  

Why Are We Being Treated This Way?

What is happening to us? Why are our physicians, those trained to treat and care for us, turning their backs on us? Why are we being shunned? Why are we being treated like we did something wrong?  

Why are people who abuse drugs being treated with compassion and care but not us? They hurt their families, they steal, they destroy their bodies, they seemingly don't care. We don't do any of that. Our pain is caused by diseases we never asked for. We care, we want to live and we want to participate in life.   

They get clean needles, clean rooms to shoot up in, free Narcan, and in Canada they are giving Dilaudid (hydromorphone) to those who abuse drugs. Dilaudid is an opioid used for treating severe pain. I was on Dilaudid three years ago. Not anymore.  

I just read about a county in England that is going to provide medical grade heroin twice a day to drug addicts. Why? The police are hoping it will lower crime in the area. I bet they have lines form they never expected.  

So now those who abuse are getting free heroin. Yet pain patients are kicked to the curb. How can physicians care for one who abuses their body but refuse to treat a human being suffering from intractable pain? I don't mean to sound so cold when it comes to those who abuse, but people in pain are suffering unrelenting pain because of them.   

If we ask for meds, ask for referrals or refuse a treatment we know will have adverse effects, we are accused of being non-compliant and dropped by our doctors. I believe the loss of compassion from our physicians is why many of us are having these unexplained pain flares that are becoming our new norm.  

I have been reading on social media that patients on opioids who move or are dropped are finding it impossible to get a new primary care physician. I saw my PCP last week and asked her about it. She emphatically told me "they" would not accept new patients who are on or had been on opioids. I was afraid to ask who “they” were, but am assuming it's all or most of the doctors in this area. 

I am sorry for all my friends in pain and for those I don't know who are in pain. I am sorry we are being treated like addicts. That those in healthcare would turn a blind eye to us. My heart breaks for those who feel the only solution is to take their life to end the pain. That is so wrong. Human beings are being pushed to that point by those elected to represent us and those in healthcare who are supposed to care but don't. I am so very sorry. 

Rochelle Odell lives in California.

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

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.

Insurer’s ‘Internal Policy’ Prevents Patients from Getting Needed Healthcare

By Barby Ingle, PNN Columnist

Patients, caregivers and providers have been fighting with insurance companies for years over step therapy practices, prior authorization delays and changes in specialty tier medications. If a claim is turned down by a payer, there is usually a way to appeal – such as a peer-to-peer review between a provider and a physician at the insurance company.

An insurance policy has come to my attention which ends peer-to-peer reviews and ultimately is a way to limit access to healthcare and avoid paying for certain treatments. Blue Cross Blue Shield of Kansas no longer allows physicians to speak directly to their medical director.

A peer-to-peer review occurs after receiving an authorization denial. Often the first denial is by a claims adjuster, who is usually not a medical professional. When that happens, the treating provider may request to speak with the insurer’s medical director to discuss the rationale for the denial. This process is sometimes referred to as a “doctor to doctor" appeal.  

Providers typically have a time frame where a peer-to-peer request must be made. For inpatient and pre-service requests, it is typically 5 business days. They have 60 days to complete the appeal from the date of denial.

Peer-to-peer requests are often not granted because they were made too late or there is insufficient clinical documentation. But they’re worth trying.

A Kansas provider recently requested a peer-to-peer meeting and received this email response from a representative of Blue Cross Blue Shield (BCBS) of Kansas:

“We used to have in our policy that we allowed requests for peer-to-peer reviews with our Medical Directors. We took that out a few years back and no longer give our providers that option. That is our internal policy.”

The email suggests this “internal policy” is not a known public policy or practice by BCBS of Kansas.

How are patients and providers able to get proper and timely care after an authorization denial if they are not able to request a peer-to-peer review?  I can see how this “internal policy” does save the insurer money over the short-term. But long term, not allowing physicians to speak directly to the medical director leads to delays and denials of care.

“Physicians are frustrated. Now this policy from BCBS of Kansas.  It is much easier to deny a piece of paper than a real human being.” says Gayle Taylor-Ford, a Kansas pain patient, provider and board member of iPain.

Step therapy and prior authorization policies are limiting access to healthcare for patients around the country. A recent study found that about 66% of prescriptions that get rejected at the pharmacy require prior authorization. Further complicating the situation is when a prior authorization is imposed, only 29% of patients end up with the originally prescribed treatment — and 40% end up abandoning therapy altogether!

This causes frustration, delay in care, depression, and poor adherence to treatment plans. The health of patients who don’t get the medication that could best treat their condition -- or who don’t get any therapy at all -- often gets worse. That leads to an increase in doctor and emergency room visits — and higher healthcare costs.

I wish we knew why BCBS of Kansas made this policy change. BCBS companies in other states still allow peer-to-peer reviews. Why is this a non-consistent policy and why is it even allowed in Kansas?

(Editor’s note: PNN asked for a comment from BCBS of Kansas and received this reply from a spokesperson: “While we appreciate you reaching out for comment, we respectfully decline to offer a response to the story.”)

There are already challenges in the peer-to-peer appeal process, as oncologist Rick Boulay, MD, described in KevinMD.com. Boulay wrote about his frustration getting cancer treatments approved when talking to the ‘insurance doctor’ who was supposed to be his peer.

“Most patients are unaware of this, but your physician is likely your biggest advocate when it comes to getting your care covered,” Boulay wrote. “At least weekly, and occasionally daily, insurance companies deny payment for some cancer treatment that I prescribe. In my career, I cannot think of a single aspect of the cancer care continuum that hasn’t been denied.”

At least Dr. Boulay was able to get peer-to-peer reviews and have some of those denials reversed. 

To deny our providers the ability to appeal is wrong. It’s just a new way to deny proper and timely access to healthcare. The fact that BCBS of Kansas is hiding its “internal policy” is also a sign that they know they are delaying and denying care that patients need.

It also raises a question. How many other insurance providers are doing the same thing?

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. 

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 FDA v. Your Stem Cells: An Insider’s View

By A. Rahman Ford, PNN Columnist

Mark Berman, MD, is a key player in the escalating conflict between stem cell therapy providers and the Food and Drug Administration.

Berman is co-founder of the California Stem Cell Treatment Center, a California-based clinic that specializes in stromal vascular fraction (SVF) stem cells, which are autologous cells derived from adipose tissue --- a patient’s own body fat.

Berman and his partner are defendants in a federal lawsuit filed by the FDA. The lawsuit claims that SVF products are considered “drugs” and “biological products” under the  Food, Drug and Cosmetic Act, and thus subject to federal regulation.

In June of this year, a federal judge in Florida upheld the agency’s position in a similar lawsuit against another stem cell company.

Berman maintains that FDA regulations for autologous cells are illegal and wants to set the record straight on the motives behind the agency’s crackdown on stem cells generally and against him and his partner, specifically.

DR. MARK BERMAN

In Berman’s view, the FDA’s assault against autologous stem cells has far less to do with the health, safety and welfare of patients, and much more to do with three other factors:

1. The pharmaceutical industry’s influence over FDA regulations.

2. The unfairness of the FDA’s clinical trial process, which preserves the position of large companies at the expense of smaller ones.

3. The medical establishment’s fear of the paradigm-shifting, market-disrupting effect of healing with one’s own stem cells.

Basic Training in Stem Cell Therapy

Berman was in many respects an accidental recruit to stem cell therapy. A cosmetic surgeon with a private practice in Beverly Hills since 1983, Berman is well known as one of the pioneers of facial rejuvenation using fat grafting.

In 2008, Berman was introduced to equipment developed by Dr. Hee Young Lee of Medikan that harvests fat in specialized syringes. Berman was intrigued and decided to purchase the equipment, which Dr. Lee said could also be used to isolate stem cells.

“Who knew? Plastic surgeons actually pioneered and advanced adipose stem cells,” says Berman.

Over the next couple of years, Berman learned more about adipose-derived SVF and how to isolate it. He also started discussing stem cell trials on orthopedic cases with Dr. Tom Grogan, a colleague in orthopedic surgery.

After a fact-finding mission to Japan in 2010, Berman and Grogan agreed to see patients. One of those patients was Berman’s wife, Saralee, who had significant hip pain after years of running marathons. Saralee was treated with adipose-derived SVF and “has remained pain free to this day,” according to Berman.

Another patient came to Berman for a face lift and said she wanted to get it done because she was scheduled to have both knees replaced in the 2-3 months. Instead, Berman and Grogan treated her knees with SVF cells for free. She demonstrated marked improvement and long-term freedom from pain.

“After seven years, we did a touch-up procedure on her and she continues to be pain free and functional,” says Berman.

In 2010, Berman and urologist Elliot Lander, MD, founded the California Stem Cell Treatment Center. Although successful, Berman and Lander never thought their SVF business would last.

“We figured we’d be good for two or three years of service and then ‘cells in a bottle’ would come along and replace adipose-derived SVF,” Berman told PNN. “It turns out that personal cell therapy may be a massively transformative technology for a variety of reasons and we’re here to stay unless the FDA can illegally have their way with us to protect Pharma and Academia.”

Early on, Berman and Lander treated orthopedic conditions associated with chronic pain – arthritis, back pain and inflammatory conditions. Not only did their patients experience pain relief, they began reporting improvement in other ancillary ailments as well.

“We quickly realized that by filtering the SVF, we could provide the cells via an IV for any variety of conditions,” Berman recalls. “Acute concussion heals overnight. Chronic traumatic brain injury may improve in many cases. Parkinson’s frequently responds well. We’ve had some good response with multiple sclerosis, Alzheimer’s and muscular dystrophy. ALS has not had good results. We’ve seen improvements with chronic heart conditions, COPD, and radiation necrosis following cancer treatments.”

Combating the ‘Unproven’ Disinformation Campaign

Their discoveries led Berman and Lander to publish a SVF safety study involving over 1,500 patients with various degenerative, inflammatory, and autoimmune conditions. They also formed the Cell Surgical Network, a network of physicians who use the same equipment and protocols taught by Berman and Lander. To date, the network has treated over 12,000 patients.

Berman maintains with conviction that “there’s no drug as safe as your own cells.” In fact, he and his family have all had successful personal stem cell treatments, as have most of the affiliate physicians in his network.

Yet news stories about “unproven stem cell procedures” persist. And Google recently went so far as to ban advertising for “unproven or experimental medical techniques,” including most stem cell therapies.

“It is sad and ridiculous that we can safely and effectively treat many people right now, but we’ve been fighting this false press that stem cells are dangerous and unproven when there’s virtually no danger and plenty of proof,” Berman says. 

“Saying it’s unproven denies how science advances. Most science does not rely upon placebo trials, something Pharma routinely takes advantage of to get a new version of an old drug on the market to exploit the public.”

The FDA As Proxy for Big Pharma

Berman has a theory why he and his partner have become targets of the FDA. It has to do with the power and influence of the pharmaceutical industry.

“When corporations get so big, and in this case actually finance government agencies, they end up controlling them in a variety of ways. They have many inside people that can facilitate their needs, but they also have pushed the FDA to write draconian regulations to keep smaller players out of the club as much as possible,” Berman explained.

“Physicians have the obligation to try to help their patients when they can – not to sit around while some sanctimonious academics or Big Pharma or FDA regulatory people decide we can try,” he adds.

Berman poses an intriguing question.

“Isn’t it interesting that no major pharmaceutical company has applied for an IND (new drug application) for personal cell therapy?” he asks.

“The answer is obvious: because they can’t own it.”

Berman believes FDA regulations are designed to protect Big Pharma from competition.

“The FDA has ignored clinicians’ and patients’ requests to be able to use their own cells for their own purposes. It’s absurd and it’s illegal.”

— Dr. Mark Berman

“Surgeons used to perform a lot more coronary bypass surgery, but Pharma developed stents and drugs to compete for the same patients,” he says. “Pharma and academia are the only two voices that matter to the FDA. The FDA has ignored clinicians’ and patients’ requests to be able to use their own cells for their own purposes. It’s absurd and it’s illegal.”

Berman and Lander intend to fight the FDA in court to the very end. A hearing date was scheduled for this month, but has been postponed until early next year.

“They’re trying hard to ruin us through the press and through these extensively long and unfair court proceedings that have been dragging out for over a year. If it’s not clear, we’re fighting for the basic civil and constitutional rights of our patients,” Berman says.

“We should be achieving new heights in healthcare and freedom yet there are so many people more interested in controlling us than letting us naturally rise to thrive.”

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.

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 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.

How Children Process Pain

By Dr. Lynn Webster, PNN Columnist

No one saw it happen. My three-and-a-half-year-old granddaughter was in the basement by herself when she broke her arm. My guess is that she was jumping on the couch or standing on the back of it. Either way, the accident left her screaming and crying -- a natural response to being frightened and injured.

At the time, it wasn’t clear if she was seriously hurt. But my daughter said she behaved very differently after previous falls left her with minor bumps and bruises.

In a recent column, "Teaching Children How to Cope With Pain," I wrote about how parents should respond to children when they injure themselves. Experiencing pain is part of life, and children develop their own reactions based on an almost infinite number of factors.

As adults, we tend to think about the physical trauma pain causes. We pay scant attention to how the young brain processes injuries or the images created in their minds as a result of them.

Children’s brains are unable to process trauma in the way adults do. This is due in part to the limited verbal ability young children have to express what they are feeling.

Still, they do integrate the experience of pain. And hopefully the lessons they learn about managing pain during childhood help them cope with pain when they reach adulthood.

Imagery and drawing are ways to help children effectively process their pain. The symbolic meaning of an image can be very revealing. Sigmund Freud described how imagery can reflect the feelings, attitudes and qualities of our environment.

Hermann Rorschach famously built on that idea to develop the Rorschach (or inkblot) test. The concept of the Rorschach test is that through drawing or interpreting images, children can convey the emotional loads they carry.

The first collection of children’s drawings of pain was published in 1885, well before Rorschach developed his test. It appeared in an article written by art reformer Ebenezer Cookie and illustrated how the stages of children’s development corresponded to the clarity of their drawings.

All trauma has the potential to affect a child’s development and perspective. This does not mean that all trauma damages the brain or renders a child unable to manage stress. In fact, trauma is a life experience that children must learn to manage without compromising their emotional development. That sets the stage for being able to handle pain effectively as they mature.

Velcro or Teflon

In his book “Hardwiring Happiness: The New Brain Science of Contentment, Calm, and Confidence,” neuropsychologist Rick Hanson says, “Your brain was wired in such a way when it evolved, it was primed to learn quickly from bad experiences but not so much from the good ones.”

That explains why traumatic memories so often stick in our brains while positive memories seem to slip away.

“It’s an ancient survival mechanism that turned the brain into Velcro for the negative, but Teflon for the positive,” Hanson concludes.

On the day of my granddaughter's injury, my daughter called and asked for help. Fortunately, my wife and I live nearby, so I rushed over immediately. Even before I entered her home, I began to wonder whether the injury my granddaughter experienced would be more Teflon than Velcro.

Usually when I arrive, my granddaughter calls my name and races to give me a hug. That didn't happen on the day she fell. Instead, she was clinging to her mother, who was trying and failing to console her and "make it all better."

It was obvious to me that my granddaughter had a fracture and needed to be taken to the emergency room.

After the orthopedic surgeon treated and cast her arm, my granddaughter experienced minimal pain. It was a bump in the road she would one day forget. Or would she? And should she?

Two weeks later, my granddaughter was at preschool, where the class was studying cloud formations. Each student was asked to draw clouds and explain what their Rorschach images meant to them.

Below, you can see my granddaughter's drawing, which she made by applying blobs of ink to the paper and folding it in half. Her interpretation of that image was that the clouds were “my broken bones.”

The separation of the clouds might have been the projection Freud would have expected from a child with a recent injury where bones were separated and had to be mended. 

It reinforced the lesson for me that young children are always processing and interpreting the events of their lives. These experiences create images and memories that are a part of their developing brains and personalities. 

Although my granddaughter is only three and a half, she is already forming her adult interpretation of pain, one layer at a time. Whether her experience will be more Teflon than Velcro, only time will tell.

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.

This column 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.

Can Pain Patients Sue the CDC?

By Carol Levy, PNN Columnist

Almost every report on the CDC opioid guideline that I’ve seen online gets this response from pain patients: “Class action lawsuit! Sue the CDC!” 

Many doctors cite the CDC’s opioid guideline when they stop writing prescriptions for opioids or reduce the amount they prescribe. Many of their patients say the tapering left them bedridden and unable to work because the pain returned to unbearable levels. Some even attempted or completed suicide as a result of no longer having the relief that opioids gave them.  

Is that enough grounds for a class action lawsuit against the CDC?  I am not an attorney, but I wondered if there is a basis for such a lawsuit.

Based on my research, the pain community does not meet the necessary legal criteria to do this.  

Aside from the difficulties of suing a federal agency, one of the many rule requirements in federal court to certify a class action lawsuit is this: “the class must show that the defendant acted in a way generally applicable to class members.” 

Few of us can point to the CDC guideline as the specific reason their doctor is no longer prescribing opioids at the same dose. It would need to be proven that all members of the class were treated in essentially the same way by the defendant CDC.

And it is doctors who changed their prescribing routines, not the CDC. Therefore, it appears we cannot form the requisite “class.” 

In addition, the CDC’s clarification of the guideline in June passed the buck by blaming individual practitioners for the guideline’s misuse:

“Unfortunately, some policies and practices purportedly derived from the guideline have in fact been inconsistent with, and often go beyond, its recommendations. A consensus panel has highlighted these inconsistencies, which include inflexible application of recommended dosage and duration thresholds and policies that encourage hard limits and abrupt tapering of drug dosages, resulting in sudden opioid discontinuation or dismissal of patients from a physician’s practice.”

So are there no actions we can take?

A recent decision by the New Hampshire Board of Medicine is one example of what happens when we do act. A patient reported his doctor to the board for refusing to continue prescribing opioids that had greatly helped his pain. As a result of the tapering, the patient’s pain became so unbearable he threatened suicide. At that point, the doctor refused to prescribe anymore opioids to the patient and dropped him. 

The board found that the doctor violated the ethical standards of professional conduct. He was fined, reprimanded, and ordered to take classes in pain management and record keeping.  

Another action is simply writing a letter, emailing or calling your federal and state representatives. Some of these people are working, intentionally or not, to hurt us.

The latest is a bill from Senator Joe Manchin of West Virginia and Sen. Mike Braun of Indiana. Neither have medical degrees, yet they have introduced a bill that instructs the FDA to tell doctors that opioids are "not intended for the treatment of chronic pain" except for cancer pain, end-of-life care or when no other pain treatment is effective.  

By telling our stories, by getting the authorities and legislators to understand what chronic pain is, and how it affects not only us but our families, community and the country, we can keep up the pressure. By submitting our complaints or filing lawsuits against individual doctors, we can be the voice of change. 

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.

This column 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.

The Risks of Vaping THC

By Roger Chriss, PNN Columnist

An outbreak of vaping-associated pulmonary illness is getting national attention. Over 800 people have been sickened and 12 have died.

The CDC reported last week that vaping products containing tetrahydrocannabinol (THC) -- the psychoactive compound in marijuana – were involved in 77 percent of the illnesses. Several states responded with bans on vaping products and health alerts on vaping THC.

What do we know about the risks of vaping?

Vaping THC is so new that there is very little research. An animal study on vaping THC was published earlier this year. Performed on male and female rats, the study found that “repeated THC vapor inhalation in adolescent rats results in lasting consequences observable in adulthood."

Specifically, both sexes became tolerant to THC and male rats ate more. Interestingly, THC use did not change oxycodone self-administration in either sex, but increased fentanyl self-administration in female rats. There is no mention of lung effects.

While vaping with e-cigarettes is relatively new, inhaling THC via cannabis smoking is old. And there is an extensive literature on multiple harms.

A recent study of nearly 9,000 people found that regular cannabis use was significantly associated with greater risk of respiratory diseases such as asthma, chronic obstructive pulmonary disease (COPD) and pneumonia. The study used blood work to confirm use and had a control group, making its results more reliable than a simple population survey.

According to the National Institute on Drug Use, cannabis smoke contains multiple carcinogens and inhalation causes lung inflammation, increased airway resistance and hyperinflated lungs, a symptom of COPD

Josh Bloom at the American Council of Science and Health writes that the solubility and boiling point of THC and CBD in cannabis vaping products may play a role in the lung illnesses.

But complicating matters is the presence of other subtsances in vaping liquids and in the devices themselves. A newly published study in Scientific Reports on aerosols in tank-style e-cigarettes found levels of chromium, lead and nickel, all known carcinogens, in excess of OSHA permissible exposure limits.

Most cases of vaping-associated pulmonary illness involve illicit products. But one fatal case in Oregon involved someone who bought vaping products at two state-licensed cannabis dispensaries.

Some vaping illnesses involve people who report no use of THC products at all, though investigators are finding that these self-reports are not necessarily accurate. According to STAT News, eight patients in Wisconsin initially said they didn’t use THC products, but were later found to have used the drug.

In other words, we may not know what people were really vaping. Given that vaping THC is federally illegal and only marginally regulated in states where cannabis is legal, investigating the role of THC in the vaping outbreak is challenging.

But the emerging risks have led states like Washington to ban all flavored vaping products. And the FDA has asked the DEA to pursue criminal charges against anyone who sells illicit vaping products.

For patients who use cannabis products for pain relief, there are better alternatives than vaping. The Arthritis Foundation recently released new guidelines that recommend CBD oils and tinctures that can be taken orally.

It is not clear what this means for the cannabis industry. But Joe Tierney, known as the "Gentleman Toker,” told the Washingtonian that he would be shutting down his cannabis website.

“I don’t feel good about the industry any longer,” Tierney said. “I don’t think it’s safe to consume cannabis anywhere after all of my travels.”

Sorting out the risks of THC vaping will take time. At present there is only circumstantial evidence and intriguing ideas. It is possible that THC is one of several different causes or is just guilty by association. Beyond that, we have the unknowns of vaping itself, which may be too novel for anyone to fully understand the risks.

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 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 Power of the Pen

By Michael Emelio, Guest Columnist

It's my hope that this column can serve as a powerful example of the harm that can be caused when people are denied adequate pain management. And in so, I pray that it also serves as a lesson to doctors and is something that our lawmakers, CDC and DEA will take a moment to seriously consider.

To understand the full magnitude of the damage that's been caused, I implore you to read a guest column I wrote last year, in which I described how the opioid medication I take for intractable back pain was rapidly tapered to a lower dose, leaving me bedridden and disabled.

It's high time that the harm being inflicted on me and other innocent victims of the opioid crisis is both acknowledged and stopped!

While I can totally sympathize with a doctor's fear of repercussions from the DEA, there comes a point where it's no longer a valid or acceptable excuse. One of those points is when a doctor, with no medically valid reason, refuses to sufficiently treat a person's pain and it results in harm to that patient.

And when a doctor refuses to prescribe a reasonable opioid dose (especially one that is within the CDC opioid guideline) and it causes a patient's condition to significantly worsen, how are they not responsible for that harm?

Speaking with other patients, I've been hearing a familiar story quite a bit lately. So much in fact, that it appears to be becoming an epidemic. Doctors with no medically valid reason are either failing or refusing to prescribe even within the CDC’s 90 MME guideline, while using the same old "well the DEA threatens to take our licenses away" excuse. 

Not only is it getting old, but it's getting people hurt and worse. And when I say that excuse is killing me, I may just mean literally!

Since the tapering started, I've gained 55 pounds and my blood sugar and cholesterol have soared to alarming rates. So in addition to all the things I can no longer do and my pain and suffering increasing, I'm now at risk of both heart disease and diabetes. Irrefutably, this is a direct result of being bedridden 24 hours a day due to the med cuts.

But it doesn't stop there. Adding insult to injury, these med cuts are also robbing me of the only chance I have to improve my condition.

Surgery Not An Option

It cannot be emphasized enough that I've seen several highly-acclaimed surgeons, who are absolutely unanimous in what options I have. They've all said the same thing: Surgery is not an option for me and due to the nature of my condition I should avoid any invasive procedures as they can make my pain worse. This includes spinal injections, radiofrequency ablation, spinal cord stimulators and pain pumps, to name a few.

They've all said that the only viable options I have left are pain meds and physical therapy. The latter is essential because “mobility is crucial to help reduce the pain and improve function.” And to slow my rate of deterioration, I should do “as much physical therapy as possible." 

So by denying me the ability to complete physical therapy due to his forced med cuts, my doctor is not only robbing me of my only chance for improvement, he is directly causing my condition to worsen at an accelerated rate. Despite explaining all of this to him, my doctor informs me that he still plans on reducing my meds even further!

On what planet does this make any sense whatsoever? When you consider all the aspects of my condition and the damage the previous met cuts have already caused, how can this be helpful in any way, yet be a necessary or even a reasonable course of action?

Especially when I'm only at 60 MME, which is considerably less than the CDC's 90 MME guideline. Furthermore, I've been a patient of his for over a year and a half and have proven to take my medications responsibly the entire time, as well as the previous 18 years I've been in pain management.

“Because of the CDC guideline and the fear instilled by the DEA, my doctor is covering his ass and slowly killing me.”

— Micahel Emelio

Think about this for a minute. I have a medical need for pain meds because of an incurable condition that is causing such severe intractable pain that I'm bedridden to the point that I struggle to care for myself properly. It’s also a condition where surgery and invasive procedures are not an option, all other methods and medications have failed, and the only chance for improvement is through physical therapy. Then add the fact that my health is in a serious state of decline as a direct result of the med cuts, and he still wants to cut them even more?

Unless you're in this boat yourself, you can't fathom the level of stress this causes. I'm literally afraid I may have a heart attack from it.

You have to understand the impact that just one more med cut would have on me. I live alone, have no one to help me, and with the dose I'm currently at, I'm already struggling most days just to microwave a TV dinner, yet alone clean my house or even care for myself properly. If he cuts my meds any further, the effect it will have on my life will be devastating.

As I sat in my car outside his office, the only thing I could think about was that if he reduces my meds any further, not only will my pain be unbearable, but I won't even be able to care for myself anymore. Being alone and poor, I only see two options at that point: street drugs or suicide. 

Make no mistake. That is the hand that is being forced on people when intractable pain is not treated!

Never in a million years could I have imagined being in this position. But sadly, this is my reality. And the truly astonishing part of it all is that he could stop all this damage and immensely change my life for the better tomorrow, simply by prescribing 2 more tablets a day, which would still be within the CDC guideline.

But no! Because of the CDC guideline and the fear instilled by the DEA, my doctor is covering his ass and slowly killing me. It's both staggering and terrifying knowing how much control he has over my life with just the swipe of his pen.

Which brings me to an interesting point. In medical school they teach about a thing they call the "power of the pen." It means to make sure that what they prescribe doesn't cause harm to the patient. I just wish my doctor realized that the power of the pen works both ways!

Michael Emelio lives in Florida. Michael lives with severe degenerative disc disease, scoliosis and fibromyalgia. He has safely used opioid medication since 2001.

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.

Can Prayer Ease Chronic Pain?

By Dr. Lynn Webster, PNN Columnist

Does prayer lead to healing? Many religious people around the world believe that it does. According to the science, it may.

Medical researchers have looked into the effects of religion and spirituality on chronic health conditions, including chronic pain, for many years. The research has produced vastly different results. According to a review of studies in the Indian Journal of Psychiatry, prayer may contribute to healing, may worsen health, or may make no difference at all.

Helen Fosam, PhD, says in Clinical Pain Advisor, "a positive emotional state and a positive expectation of pain relief can lower pain and enhance clinical effect of treatment."

So if you believe prayer can ease your pain, it may happen.

Pain Is a Spiritual Condition

As I say in my book, The Painful Truth, pain is a bio-psycho-social-spiritual condition. However, it might make more sense to reverse the order and put “spiritual” first because, for many people, the spiritual dimension is the most important.

More times than I can remember, I’ve known people in pain to cry out to God for mercy, kneel in silent prayer, cross themselves or finger their rosary, practice yoga or meditation, wear crosses or angel pins or crystals, express a longing for heaven, mention attending religious services, or tell me about their belief in God.

Even religious skeptics who are in pain sometimes pray for themselves or ask others to pray for them.

The simple fact is that most people have a tendency to turn to God and faith when they are in need, including when they are in pain. Along with most other pain specialists, I have come to see this as generally a good thing, because relating to a God or a perceived spiritual reality beyond oneself can affect one’s pain experience positively.

Prayer As Meditation

Prayer is a specialized form of meditation. According to the National Center for Complementary and Integrative Health, meditation "may be helpful for a variety of conditions, such as high blood pressure, certain psychological disorders, and pain."

People who have faith in a higher power and turn to prayer may be availing themselves of the medical benefits of meditation.

Of course, not everyone who is in pain is religious or spiritual -- or wants to be. I’ve known many people with pain who have experienced a substantial increase in their life satisfaction without recourse to spiritual beliefs and practices. Some of them have practiced meditation, and some of them have not.

But if we’re interested in what promotes healing for those enduring long-term pain, we can’t ignore the interaction between belief and pain.

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. 

Green Without Envy

By Mia Maysack, PNN Columnist

In the opinion of some, at various points in my life I could've been considered a "pothead." 

If that is how you refer to the medicinal use of a plant that grows freely in nature, I own the judgement with pride.  

I've known people who sit around and smoke loads of grass to the point of everything being funny -- but they're too stoned to laugh. That has never been my intent or relationship with marijuana.

This is another element of living with chronic pain and illness that is severely misunderstood -- the desperation we feel for relief.  After you've tried countless traditional approaches to no avail or improvement, I don't care what anyone says. Every single person reaches their absolute limit or breaking point.

When others have discovered that marijuana is part of my care plan, I've been shunned and labeled as a drug addict by the very same people who puff cigarettes, drink alcohol into oblivion, cannot get through a day without coffee, and poison themselves with food-like-products from a drive-thru window.  

Please explain how a man-made drug produced in a lab is somehow safer than marijuana. The only difference is that the drug is regulated and thereby taxed. Arguably, that’s what all of this is about: Money.  

I haven't come across anything that eases my head or body pain. I have only been able to accumulate a short list of helpful remedies that can temporarily (but not always) assist in my co-existence with pain. 

For example, marijuana helps combat nausea, which aids with proper nourishment and hydration. And when you haven’t had a good night’s sleep in days or weeks, a marijuana-induced state of relaxation can mean the difference between restful sanity or a trip to the loony bin.  

There will always be people who abuse whenever they get an opportunity, in the same way that every church has sinners and one bad pizza doesn't mean all pizza joints are bad. The unfortunate choices of a few should not outweigh the credibility of many.

When I ingested my first opioid, it lifted the agony in a way I had never experienced before. I remember like it was yesterday. I thought for sure I was too sick to make it into work but chose to attempt this pill, solely out of desperation. It left me smiling ear-to-ear on my way to my beloved nursing job.

But as I pulled into the parking lot, I was struck with an overwhelming wave of sickness and could barely make it to the trash can before completely losing it. I had an allergic reaction to opioid medication and another potential treatment was biting the dust. 

I do not touch the stuff anymore, but that doesn't change the fact that opioids have proven to be extraordinarily helpful for a countless amount of people. And these same people who were given legitimate prescriptions are now being punished by having their medication taken away, often without a follow up plan or any notice. 

Healthcare providers are balancing on a sensitive tight rope between doing no harm while attempting to avoid ruining their good legal standing or that of their practice. This is causing many patients to feel abandoned, lost and isolated, with low quality of life and high suicide rates.

Peering into the window of someone else's life and judging them simply because you don't understand their thoughts, experiences or desperation is unacceptable.

It's easy to be judgemental and not care about the crisis in pain care if you or a loved one hasn't been personally affected by it. But this is a general societal crisis that affects young and old, rich and poor. Someday it will affect you.

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 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 Opioid Risk Tool Has Been Weaponized Against Pain Patients

By Dr. Lynn Webster, PNN Columnist

I was surprised and deeply disappointed to learn this week that people have been denied opioid prescriptions due to their responses on the Opioid Risk Tool (ORT).

As a guest on the DPP Rally Talk Show with Claudia Merandi, I heard from a caller who told me that her doctor denied her an opioid prescription based on her ORT answers.

One particular answer seems to have caused the caller’s problem: She acknowledged her history of experiencing preadolescent sexual abuse. Apparently, the doctor used that as a reason to deny her access to opioid medication to treat her pain. This is a terrible misapplication of the tool.

The ORT is a self-assessment tool I developed and published about 15 years ago. It was developed at a time when we didn’t know the rate of opioid abuse in patients who were prescribed an opioid for noncancer pain. We needed a tool to help evaluate whether the risk of potential harm from opioids outweighed the good.

I never intended for doctors to use the ORT to determine who should or shouldn’t be prescribed an opioid. My goal was to help doctors identify patients who were at increased risk of misuse and addiction, so that they could receive more careful observation during treatment.

Since abuse and addiction are diagnosed by observing atypical behaviors, knowing which patients are at greatest risk for displaying those behaviors is useful in establishing appropriate levels of monitoring for abuse.

I was not alone in the belief that it was critical to assess patients for their risk potential.

In 2009, the American Pain Society and American Academy of Pain Medicine published a guideline for opioid prescribing. Its first recommendation stated: “Prior to initiating COT (chronic opioid therapy), clinicians should conduct a history, physical examination, and appropriate testing, including an assessment of risk of substance abuse, misuse, or addiction.”

Then, in 2016, the Centers for Disease Control and Prevention’s opioid-prescribing guideline recommended that “before starting and periodically during continuation of opioid therapy, clinicians should evaluate risk factors for opioid-related harms.”

Several other opioid prescribing guidelines also recommended assessing patient risk before initiating therapy. These included the Washington State Department of Health, Utah Clinical Guidelines on Prescribing Opioids for Treatment of Pain, the American Society of Interventional Pain Physicians (ASIPP) Opioid Guidelines, and others.

Risk Factors for Opioid Abuse

Assessing the risk of developing opioid abuse is based on genetic and environmental factors, just as it is with other diseases. Accordingly, the ORT includes questions about family and personal history of substance abuse, since both areas contribute to genetic and environmental factors. 

Genetics are estimated to contribute between 50 to 60% of an individual's vulnerability to opioid addiction. By contrast, genetics contribute only about 30% to a person's vulnerability to marijuana.

A person with one addiction is seven times more likely to develop an addiction to a different class of drugs, so genetics plays a major role in determining who will and who will not develop an opioid use disorder (OUD). Additionally, life experiences -- which are part of one’s environment -- also play a role.

The ORT asks if there is a history of experiencing preadolescent sexual abuse. Studies indicate that preadolescent sexual abuse is believed to result in something clinically similar to post traumatic stress disorder (PTSD).

The National Institute of Drug Abuse (NIDA) has reported that 30 to 60% of women who are undergoing drug abuse treatment suffer from PTSD. One treatment center in New York City reports that more than 90% of women treated for substance abuse had experienced sexual or traumatic abuse. 

According to another NIDA report, victims of rape were 10 times more likely to have abused heroin and other stimulants than the general population. A study in 2000 also showed that a history of preadolescent sexual abuse tripled the risk of drug use disorders.

Many other studies have corroborated these studies, showing that preadolescent sexual abuse is a risk factor for substance abuse later in life. The most important of these is the seminal CDC-Kaiser Permanente Adverse Childhood Experience Study.

A Cruel Misapplication of ORT

Environmental and genetic factors should influence how closely a patient's opioid use is monitored. However, a history of experiencing preadolescent sexual abuse does not mean a person will necessarily develop an OUD. It is only a risk factor. It does not determine the outcome of using opioids, although it may partially indicate the level of monitoring, support, and education that would be appropriate.

It is a cruel misapplication of the ORT to use a background of sexual abuse as the only criterion to assess whether a patient should receive opioid therapy. The ORT is an important tool in mitigating harm that prescribing opioids could cause. It should not be weaponized to justify denying people in pain appropriate therapy. 

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.

How Awareness Can Help Calm Your Pain

By Dr. David Hanscom, PNN Columnist

Anxiety and anger are major aspects of the chronic pain experience. In this state, your mind is full of racing thoughts and vivid imagery, and it’s hard to focus on anything but you and your pain.

They block your awareness of other’s needs. It becomes a challenge for friends, family, and coworkers – anyone – to connect with you. If you’re touchy and constantly on edge, it’s exhausting for others to be in your presence.

Having a good support system is an important part of your recovery from chronic pain because positive relationships have a calming effect. But now you are driving people away.

Awareness is a powerful and necessary tool in breaking through this barrier. What you are not aware of can and will control you.

I have found it helpful to look at awareness from four different perspectives: environmental, emotional, judgement and ingrained thought patterns.

Environmental awareness is placing your attention on a single sensation – taste, touch, sound, temperature, etc. What you are doing is switching sensory input from racing thoughts to another sensation. This is the basis of mindfulness – fully experiencing what you are doing in the moment.

I use an abbreviated version that I call “active meditation,” which is placing my attention on a specific sensory input for 5 to 10 seconds. It is simple and can be done multiple times per day.  

Emotional awareness is more challenging. It often works for a while, but then it doesn’t. When you are suppressing feelings of anxiety, your body’s chemistry is still off and full of stress hormones. This translates into physical symptoms.

Allowing yourself to feel all of your emotions is the first step in healing because you can’t change what you can’t feel. Everyone that is alive has anxiety. It is how we survive.

Judgment is a major contributor to creating mental chaos in our lives. Dr. David Burns in his book “Feeling Good” outlines 10 cognitive distortions that are a core part of our upbringing. Some of them include:

• Labeling yourself or others

• “Should” thinking – the essence of perfectionism

• Focusing on the negative

• Minimizing the positive

• Catastrophizing

• Emotional reasoning

Becoming aware of these errors in thinking allows you to substitute more rational thought patterns.

Ingrained thought patterns are the most problematic to be aware of. Recent neuroscience research has revealed that thoughts, concepts and ideals become embedded in our brains and are just as real to you as the chair you are sitting in.

That is why people engage in aggressive behavior when their belief systems are challenged. We are all programmed by our past. Your thoughts and beliefs are your version of reality.

Becoming Aware of Your ‘Unawareness’

The first step in becoming aware is realizing that you are unaware. This never ends because there will always be areas of our thinking and behavior that are not consistent with the needs of the situation. 

When I look back on my life’s journey, one of the most disturbing aspects of it is realizing the extent of my unawareness. For instance, when I was in my full-blown obsessive mode, I didn’t have a clue. I recall one time when a friend referred to my “obsessive nature.”  I didn’t know what the word really meant and was certain it didn’t apply to me.

How can you tap into your unawareness? One way is to look for cues in certain behaviors and attitudes, which may mean we’re out of touch with how we’re feeling.  Some examples: 

• Having a rigid opinion about almost anything: religion, politics, someone’s character, etc.

• Being told you are stubborn or “not listening”

• Interrupting someone to offer an opinion before you’ve heard theirs

• Insisting on being right.

• Thinking about something besides what you are doing.

• Judging yourself or others negatively or positively.

• Feeling anxious or angry

• Giving advice when not asked for it

• Thinking you are wiser than your children

• Acting on impulse.

This list is infinite. If one or more resonates with you, it’s probably time to take a step back so that you can respond appropriately to a given person or situation. This is the essence of awareness.

Another clue of unawareness -- not listening -- is one that I discovered with others’ help. My weakness in this area became readily apparent when I attended a parents’ meeting at my daughter’s school.

I will preface this story by saying that I had always considered myself a good listener. It was one of my major personal identities. My wife has not always agreed with that viewpoint. Of course, I did not listen to her.

At the parents’ meeting, we did an exercise where we had to write down on a piece of paper a characteristic that another parent could “work on.”  We could write to two parents anonymously.

Most parents received one or two slips of paper. I received twelve (out of 18) that all said the same thing: “David, you don’t know how to listen.”  

That was a very difficult moment for me. I found it extremely hard to not become defensive. But how could I disagree with 12 people?  I came to accept that they were right, especially in retrospect. It was a trait that I truly could not see. I simply had to trust a group of people who I knew did not have an agenda and had my best interests at heart. 

After that meeting, I came to realize how not listening had interfered with my general awareness. It’s one of the central tenets of awareness: You cannot be aware if you cannot listen.

Practicing Awareness

Understanding and practicing awareness is the first step in reprogramming your brain. It’s the easiest technique to explain and the most difficult to consistently use. Environmental awareness is the foundational first step and spending as much time as possible doing “active meditation.” Regardless of where you are in your journey, being fully aware of stimuli coming into your brain will help calm you down.

When you are ready for the second level of emotional awareness, simply watch your emotions pass by and then pull yourself back into seeing, hearing and feeling, as quickly as possible. It is a little challenging, as emotions often evoke powerful reactions. Training yourself to be with these feelings instead of fighting them is a learned skill and may require some support from a professional.

The third level – judgement -- is a lifetime journey. The key is to be persistent in not judging yourself or others. A good starting point is understanding than whenever you place a positive or negative judgment on someone else, you have simply projected your view of yourself onto the other person. As you become aware of these cognitive distortions, you will be able to regain control of your life.

Remember that in the fourth level of ingrained patterns, it is impossible to see yourself through your own eyes. This is where resources such as psychologists, good friends, spouses, children, and seminars have to be utilized. The key is being willing to listen.

Becoming aware of everyone and everything around you is much more interesting and enjoyable than merely expressing and reinforcing your own views on life day in and day out.  

Dr. David Hanscom is a spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery.

In his book Back in Control, Hanscom shares the latest developments in neuroscience research and his own personal history with pain.

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.

Do Doctors Care?

By Katie Burge, Guest Columnist

Tell me... exactly when did it become acceptable for physicians to not only harm, but to actually contribute to a patient's demise by denying adequate, necessary medical care? 

I'm referring to the rising death rate among chronic pain patients, whose doctors have yielded to political pressure and reduced their patients’ doses of pain medication to the point that they are virtually useless or refused to continue prescribing pain medication at all -- regardless of diagnosis or need -- because they fear regulatory action if they continue treating pain with opioids.  

Am I missing something? Under the Hippocratic Oath, aren't physicians supposed to strive to do no harm?  Or should we just start calling it the Hypocritical Oath when it comes to people in pain?

You might think that denying opioids to folks can only be a positive thing, but for those of us who suffer from severe, round-the-clock pain that only responds to opioids, this scenario is a nightmare.  Losing access to the only thing that lessens your pain can feel like a death sentence. And in some cases, it is.

Being forcibly tapered off opioids and then having to cope with the full brunt of your pain causes extreme stress, which can lead to heart attack and stroke.  Even worse, it causes some patients to lose hope of ever attaining help and commit suicide.

This almost happened to me last year. The really shocking thing is when I told a couple of my doctors that I was becoming increasingly suicidal because of pain, they just ignored me.

I guess they felt like if they acknowledged the reasons for my depression, they might have to address my pain. That is unacceptable to many physicians nowadays. I call this the "Ostrich" School of Medicine — where the doctors bury their heads in the sand whenever the topic of chronic pain comes up.

Many doctors have become so desensitized to pain and suffering that they seem to believe they're absolved of any responsibility when presented with a patient whose chronic pain is so severe that it only responds to opioids. They'll fall all over themselves trying to get away from us.

My longtime family doctor refuses to even discuss my chronic pain. And when pain management specialists see the catalog of all my conditions, they visibly cringe. It’s as though I make them feel threatened, when the real threat comes from bumbling bureaucrats attempting to prove that they aren't completely impotent when it comes to dealing with the opioid epidemic.

A major truth about the opioid epidemic is that these bureaucrats can't do a damn thing about recreational drug use, but they want their constituents to believe they can. So in a lame attempt at proving their political prowess, they put the squeeze on pain management physicians and blame vulnerable pain patients for other people's opioid abuse.

What really makes my jaw drop in astonishment is the fact that most doctors simply kowtow to this bureaucratic lunacy without even trying to advocate for their patients or their own right to treat patients to the full extent of their education and experience. Doctors should never be put in the position of having to choose between incarceration and providing compassionate medical care.

There aren't many courageous physicians left who will help somebody like me.  I did eventually find one who gives me about half the medication I need to get through a month and be able to function. This enabled me to survive my “suicidal” level of pain, but I wouldn't actually call it living. 

My round-the-clock pain is being treated with a short-acting opioid that I'm only allowed to take once every 8 hours, because the doctor says he's not "allowed" to prescribed the long-acting, time released opioids anymore. These extended relief medications provide much better, more even relief -- often at a lower dose than the immediate release, short-acting opioids.

My current drug regimen creates kind of an evil roller coaster effect, where I'm okay for 3 or 4 hours and then the pain spikes for the next 4 hours until I can take another dose. And then the roller coaster takes off all over again.

Over the past 20 years, I've tried every traditional and alternative treatment known to medical science. Some have been beneficial and some have not, but I've learned what is safe and effective for me. I just wish my doctor would take my word for it. I know I'll never be pain free and surgeons say they're unable to "fix" me, so pain management is the only option I have left.

I am alive today due to a combination of God's grace and the adrenaline created by a combination of righteous indignation and an intense passion to help other pain patients and educate the public about chronic pain.

If you are a pain patient or you love a pain patient, please speak up and be counted if you're not getting the treatment you deserve. Never give up!

Katie Burge lives in Mississippi. Katie has degenerative disc disease, spinal stenosis, spondylolisthesis, failed back syndrome, stenosis, osteoarthritis and fibromyalgia. 

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.

Lessons from ‘Fentanyl, Inc.’

By Roger Chriss, PNN Columnist

The new book “Fentanyl, Inc.” by investigative journalist Ben Westhoff takes a close look at illicit fentanyl, synthetic drugs and the overdose crisis.

Westhoff tracks the history of fentanyl, interviews “Dark Net” drug dealers and infiltrates Chinese chemical manufacturing firms as a prospective buyer. He explores how the production, sale and use of illicit drugs has evolved with the creation of fentanyl and other new psychoactive substances (NPS).

Westhoff starts with a brief history of opioids and the overdose crisis, saying that the “vast majority of legitimate users of OxyContin and other opioid medicines receive the intended benefit.”

But addiction and overdose became real problems, due in part to misbranding by Purdue Pharma, Insys Therapeutics and other drug companies, as well as missed regulation by the FDA and DEA.

Fentanyl itself was first developed by Paul Janssen in 1960 as a surgical anesthetic. As Westhoff notes, “Without this compound and its analogue, sufentanil, open-heart surgery would not be possible.”

But fentanyl and other newly developed synthetic compounds quickly escaped into the wild. Westhoff explains how fentanyl powder mixed with heroin became known as China White, “the first popular, illicit drug synthesized by a rogue chemist that was new, rather than simply a copy of something already on the medical market.”

These new chemicals entered a changing world. Westhoff describes how the new drug trade grew for the same reasons the economy grew – the increased speed of communications, Internet technology, improved shipping, relaxed trade barriers and the relentless search for higher profit margins.

Illicitly manufactured fentanyl is produced, sold and used outside of standard medical care. In fact, most drug abusers don’t even want fentanyl, but it’s often cut into the drugs they seek, such as heroin, meth, cocaine and counterfeit pills. Other times they’ll get fentanyl because nothing else is available and they fear withdrawal.

‘Drug Policy In Shambles’

The supply lines for illicit fentanyl and other synthetic opioids are clear, too. A small amount is made in the United States or comes into the country on planes or boats. Most commonly, however, it enters in the mail from China or is smuggled across the border from Canada or Mexico.

Westhoff ultimately goes to the source, talking to Chinese manufacturers of fentanyl precursors and to Dark Net drug resellers. He listens to Chinese sales staff explain how the fentanyl precursors are not technically illegal in China and so can be sold as desired, and interviews a Dark Net dealer who justifies his work as a form of harm reduction.

Westhoff is unstinting in his criticism of China: “There is little doubt that China is undercutting its publicity stated goal of stopping the export of dangerous drugs for illicit use. That’s because the country actively encourages the export of fentanyl and fentanyl precursors—and even synthetic cannabinoids—through its tax code and high-tech subsidies.”

But other countries may be worse still. While China has been at least somewhat responsive to American requests to control its chemical industry, India has failed to schedule synthetics and fentanyl precursors to stop their production. Mostly, however, he says that America is not equipped to deal with synthetic drugs.

“Today, US drug policy is in shambles. Our laws—and those in countries around the world—simply weren’t ready for the NPS revolution,” he writes.

In other words, there is no way to control supply anymore. That leaves prevention, harm reduction, and treatment. Westhoff describes the efforts of drug education campaigns like DanceSafe, Energy Control and Drogart, and novel drug treatment ideas like safe injection sites and prescription-grade heroin.

“Curbing the tide of US opioid deaths will require sweeping new public-health initiatives, including treatment programs and campaigns to educate everyone, from users and medical providers to teachers and police, about the drugs’ dangers,” Westhoff says.

He also recognizes that drug use and addiction occur in a broader context. Many drug users are coping with childhood trauma or have a mental health disorder.

The main lesson of “Fentanyl, Inc.” is that we are facing a drug overdose crisis that involves new substances, new usage patterns and new drug markets. We’re not dealing with a single chemical like alcohol or a plant like cannabis. Nor are we just dealing with medical practice gone wrong. Instead, we’re facing something new, and we need to adapt.

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 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.