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

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.

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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.

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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.  

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“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.  

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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. 

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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. 

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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.

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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?

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(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?

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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 FoundationShe 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

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.

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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.

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“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.”

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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.

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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.”

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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.

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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.” 

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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. 

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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.