Alcohol Yes, But Opioid Meds Not So Easy

By Fred Brown, Guest Columnist

Like everyone else, I have found that living through the past many months of Covid-19 has been very taxing and challenging. Fortunately, our family has been blessed. One of our daughters who works in a local hospital caught a mild case of Covid-19 and has fully recovered. The rest of us are Covid-free. 

As more and more states began to reopen their economies in the spring, I noticed an interesting phenomenon.  Why were some of the first businesses to reopen bars and lounges?   

Before becoming a chronic pain patient, I did enjoy an occasional vodka and tonic or a glass or two of wine.  But now that I am on medications to help reduce the symptoms of pain, I am not stupid enough to drink liquor.  Even during religious holidays, where small amounts of wine are customary, I will drink grape juice. 

Fellow pain patients; please do not combine your medications with any form of liquor. There is plenty of evidence that side effects from the two do not add up. They multiply! 

My objective in this column is to make a point and share an observation about alcohol. Unfortunately, this legal drug kills an estimated 88,000 Americans every year. Alcohol not only hastens the deaths of people who abuse it, but often causes the deaths of other innocent people. 

I am in no way saying that bars, lounges and liquor stores should not open. I would never say what people should or should not do.  But I must still pose the question: Is alcohol really a necessity?  I do not know. But speaking as a patient advocate, I will say that something else most certainly is: Many patients need opioid medication to help control their pain. Not to take the pain totally away, but to help reduce the symptoms and have at least some quality of life. 

Millions of people are in constant, daily pain -- and usually not through any fault of their own. There are hundreds of different diseases that cause severe pain. Or maybe there was a medical error or botched surgery that resulted in a patient having chronic pain. 

I am not going to analyze why an individual drinks alcohol. It is a legal and socially accepted practice during dinner, parties and other events, many times in celebration. But why is this drug sold so freely, while opioid medications have so many obstacles and barriers that prevent patients from obtaining them? Even when a licensed physician legally prescribes them?  

Both alcohol and opioids, when used over time, can cause people to become dependent or, in some instances, addicted. But there is a big difference between addiction and dependence that many people do not fully recognize. Briefly, let us examine the truth about both terms.   

Dependency refers to a person who has been on medication for a specific period (generally at least weeks or months). The body has developed a physical dependence on the drug and has built a tolerance to it. Pain medicine may require increases in dosage and strength over time because of the progression of the underlying medical condition or because the body has adjusted and becomes tolerant. If the medication is withdrawn rapidly, the person may suffer very unpleasant withdrawal symptoms.

Addiction is a compulsive need for and use of any habit-forming substance, such as opioids, nicotine or alcohol. It is characterized by a spectrum of well-defined behaviors that persist even when the substance use is associated with profoundly negative consequences for the user and their family.

Is there an "opioid crisis" as the media has reported? YES!  Was it primarily caused by doctors writing too many prescriptions for opioids? The answer to that question is a resounding NO!   

It is rare for a medical patient to abuse or become addicted to opioid medication. Every person processes medication differently. Their bodies metabolize medicines at different rates.  That is why the current belief in "one size fits all" solutions for pain are not acceptable. There is zero science to back it up.  

Fred Brown is an advocate for pain patient rights who has lived with degenerative disc disease, bone spurs, stenosis and other spinal problems for over two decades. Opioid medication therapy allows Fred to continue functioning and have quality of life.  

Understanding the Difference Between Prescription Fentanyl and Illicit Fentanyl

By Roger Chriss, PNN Columnist

The opioid overdose crisis is now being driven by fentanyl. But misunderstandings over what fentanyl is, where it comes from, how it is used and why have become so pervasive that they plague discourse and debate about the crisis. News reports about “fentanyl overdose deaths” appear almost daily.

October saw a particularly tragic death. As reported by the Daily Courier in Prescott, Arizona, a 14-year-old high school student died of an overdose after taking what investigators suspect was a counterfeit pill “laced with the potent narcotic painkiller fentanyl.”

The tragedy of this death cannot be overstated. Nor can thousands of other overdose fatalities caused by fentanyl. But the nature of the drug needs to be better understood if we are to prevent such deaths moving forward.

Fentanyl is not one drug. It is better thought of as a family of synthetic opioids that are structurally similar, and includes sufentanil and remifentanil. These are pharmaceutical fentanyls, used clinically as anesthetics and essential for medical procedures such as open heart surgery.

Collectively, these drugs are part of a super-family known as fentanyl analogues. There are dozens of such drugs. Some are compounds developed by pharmaceutical companies for legitimate medical use, and others are manufactured illegally for use as street drugs. These forms of fentanyl are commonly referred to as “illicitly manufactured fentanyl” by government agencies like the CDC. The DEA has classified “fentanyl-related substances” as Schedule I controlled substances, meaning they are illegal to manufacture, distribute or possess.

To make this even more complicated, the fentanyl drug carfentanil is used legally in the U.S. as a tranquilizer for elephants and other large animals. The DEA authorizes production of a minute quantity of carfentanil for veterinarians every year. But illicit carfentanil from overseas occasionally shows up on the street and causes fatal overdoses.

Further muddying matters is the new fentanyl-like street drug isotonitazene, which is known colloquially as “iso.” It is “fentanyl-like” in its risks and harms, but is not technically a fentanyl analogue. “Iso” is instead related to etonitazene. Neither of these drugs has any recognized medical use in humans.

Risks Are Very Different

In other words, there is a vast gulf between pharmaceutical fentanyl and illicitly manufactured fentanyl. The former is a tightly controlled Schedule II prescription medication, approved for use in hospitals and to treat breakthrough cancer pain. The latter is an illegal substance cooked up in illicit labs that is often added to heroin or used to make counterfeit pills, which are then sold on the street or online.

This distinction is critical for understanding the opioid overdose crisis. The risks of a prescription opioid like fentanyl when given for medical use to a legitimate patient are very different from the risks of an illicit opioid being used non-medically by a random street buyer. Importantly, the risks for medical use can be addressed and managed. The risks of illicit use are much harder to deal with and often prove fatal.

The distinction also leads to confusion. The abundance of fentanyl on the street is rarely a result of diversion, and is unrelated to the supply of pharmaceutical fentanyl. These are different drugs, much as the cocaine nasal spray recently approved by the FDA as a local anesthetic is completely separate from the cocaine bought on the street. Pain experts are now pushing for a new classification for illicit fentanyl analogues, in the hope of clarifying this difference.

But fentanyl has so saturated the street drug market that more than a name change will be needed. As Ben Westhoff explains in the book “Fentanyl, Inc.”, preventing future 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.”

Understanding the difference between pharmaceutical fentanyl and illicitly manufactured fentanyl is an essential step in the effort to reduce overdose deaths.

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. 

Clarifying the New Definition of Pain

By Dr. David Hanscom, PNN Columnist

What is pain? We toss the word around a lot without really understanding – or defining -- what it actually means.

There are many different types and sensory levels of pain. A loud noise is uncomfortable. Bitter tastes are unpleasant. Ringing in your ears is more than annoying. Sometimes our feelings get hurt. Physical pain can be mildly irritating or crippling.

The way every living species evolved and survives is by processing these multiple types of sensory input and interpreting them as either safe or dangerous. Then its behavior is directed towards safety and reward, while also avoiding threat.

Short-term acute pain is a warning signal that indicates there is potential damage to a specific body part. Acute pain is necessary and protective. You might even call it a gift. People who are born without a pain system don’t often survive more than 10-15 years. They can’t sense danger. Tissues are destroyed and they die of infection.

But there is nothing useful about chronic pain. When a delicately balanced signaling system is out of kilter, it can no longer accurately interpret the environment. You become trapped by incredibly unpleasant sensations. Chronic pain may be one of the worst experiences of the human condition. It interferes with physical function, social interactions, and psychological well-being.

Recently, for the first time since 1979, the International Association for the Study of Pain (IASP) revised its definition of pain. This was made necessary by neuroscience research showing that pain could arise from sources other than physical tissue damage.

Old IASP definition: "An unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage."

New IASP definition: "An unpleasant sensory and emotional experience associated with or resembling that associated with actual or potential tissue damage." 

Although the revision is a relatively small one, it has big implications for appreciating the complexity of pain. Adding the words “resembling” and “potential” allows for an expanded understanding and appreciation of pain beyond what was previously limited to actual tissue damage. 

Dropping the word "described" allows for recognition of pain in people who may not have the ability to effectively communicate their pain, such as infants, cognitively impaired individuals or those with speech and hearing disorders.  

Pain Is a Personal Experience That Should Be Respected

The new definition expands our understanding of pain in 6 key areas: 

• Pain is a personal experience that is influenced to varying degrees by biological, psychological and social factors 

• Pain cannot be inferred solely from activity in sensory neurons 

• People learn the concept of pain through their life experiences 

• Every report of pain should be respected 

• Although pain often has a protective role, it may also have adverse effects on physical function, as well as social and psychological well-being

• The inability to communicate pain does not negate the possibility that someone is feeling pain

It is logical that pain is personal because each person is genetically different and we are programmed with regards to safety vs threat by our past. If you come from a less than nurturing background, more things in the present will seem dangerous. You will spend more of your time in “high alert” – with a sustained exposure to stress hormones and inflammation that could lead to physical symptoms and illness.

Pain being a learned experience is well established in the medical literature. One classic study involved looking at childhood trauma. A scoring system was developed called the ACE score (Adverse Childhood Experiences) that looked at various kinds of physical and emotional trauma. Higher rates of chronic diseases, including chronic pain, are often associated with childhood trauma.

Since physical symptoms are created by the patient’s interaction with his or her environment, it is critical to know the person and their life circumstances. How can you solve any problem without deeply understanding it?

Unfortunately, mainstream medicine has not incorporated the last 20 years of neuroscience research into their treatment approach. It continues to recommend random simplistic treatments for a complex problem. It can’t and doesn’t work. The new IASP definition is a start and opens the door for a better treatment paradigm.

Chronic pain is solvable with a better understanding of it and informed principles behind the solutions. The starting point is for YOU to better understand it and then solve it while using the medical system as a resource. Once you take charge, it is game on.

Dr. David Hanscom is a retired spinal surgeon who now teaches back pain sufferers how to calm their nervous systems without the use of drugs or surgery. He recently launched a new website – The DOC Journey – to share his own experience with chronic pain and to offer a pathway out of mental and physical pain through mindful awareness and meditation.

Where Is the Hurry to Help People With Chronic Pain?

By Carol Levy, PNN Columnist

Why is the United States and the rest of the world in such a hurry to get a vaccine against Covid-19?

Easy to answer: The virus is a killer. As of the writing of this column, the number of American deaths stands at over 237,000 and is rising daily. The number of infected is nearing 10 million. The effect on the economy has been tremendous. The use of medical resources is stretching a fragile system even thinner.

Why aren’t we in such a hurry to develop new treatments and drugs -- specifically non-opioid medications -- for chronic pain?

Hard to answer, given the similarities. Chronic pain is a killer. Some studies have shown that those who live with moderate to severe chronic pain have higher mortality rates than those who do not have painful disorders. Studies have also shown we have higher rates of suicide.

The economic costs of chronic pain in the U.S. are enormous. In 2010, estimates of lost productivity due to pain ranged from $299 to $335 billion. The total cost to the country was estimated to be up to $635 billion, more than the annual costs of heart disease, cancer and diabetes.

Treating chronic pain is also a burden on the health care system. Pain is one of the main reasons for medical appointments. We are often bounced from specialist to specialist to specialist – who often have difficulty diagnosing us or don’t want to be bothered treating us, especially in the face of the “opioid crisis.” The stress of untreated pain often leads to other health issues and diseases, which result in the use of even more medical resources.

Covid is contagious. That makes it more dangerous than chronic pain.

But it seems pain patients are also viewed as contagious. We’re often blamed as the major cause of the opioid epidemic. We allegedly abuse our prescribed opioids or give or sell them to others. We are so careless that others steal them from us. We are the “superspreaders.”

If Covid requires a quick answer due to its deadliness and economic and societal costs, then so too does the epidemic of chronic pain.

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.”

How to Appeal a Denied Health Insurance Claim

By Barby Ingle, PNN columnist

Most pain patients rely on their healthcare providers to appeal insurance company denial of care decisions for them. Some providers are now charging fees to do the appeal paperwork for a patient.

I have found that when I handled the appeal myself, I am often able to get coverage for what I needed and in a timelier manner. I get that this is a daunting process. Many insurers seem to deny coverage and then wait for the appeal. Only about 20% of us follow through on the appeals for a variety of reasons. But it can be done.

At the end of this article is a sample of the letter I send to my insurance company when I run into a situation where the prior authorization has either taken too long (more than a few days) or has been denied.

I start by including copies of my medical records that pertain to why I need a procedure, durable medical equipment or medication. I have kept all of my medical records going back to 2002 in 3-inch binders. I now have 10 binders full, and have them organized by provider and date of service. Keeping good medical records is key to filing an appeal, so you don’t have to start from scratch.  

It can be very helpful if you also attach 3-5 clinical studies that show the effectiveness of what you are requesting working for others with your condition. Try to use studies completed within the past 5 years and with an N of at least 500 (number of participants). Two places where you can look up studies are ClinicalTrials.gov and MediFind.

I know that finding a study can be quite tough for those with ultra-rare and rare medical conditions. If you fall into that category, mention in your letter that the treatment may still be worth a shot and save you from future medical bills and procedures – and help the insurance company as well.

Here’s a sample letter to use when appealing:

Date

Name

Insurance Company Name

Address

City, State ZIP

Re: Patient's Name, Type of Coverage, Group number/Policy number

Dear (contact person at insurance company),

Please accept this letter as my appeal to (insurer’s name) decision to deny coverage for (state the name of the specific procedure denied). It is my understanding based on your letter of denial dated (insert date) that this procedure has been denied because:

(Quote the specific reason for the denial stated in denial letter)

I was diagnosed with (disease) on (date). Currently Dr. (name) believes that I will significantly benefit from (state procedure name). Please see the enclosed letter from Dr. (name) that discusses my medical history in more detail.

I believe that I am attaching additional information that you did not have at the time of your initial review. I have also included with this letter, a letter from Dr. (name) from (name of treating facility). Dr. (name) is a specialist in (name of specialty). (His/her) letter discusses the procedure in more detail. Also included are additional medical records and several journal articles explaining the procedure and the expected results.

Based on this information, I am asking that you reconsider your previous decision and allow coverage for the procedure Dr. (name) outlines in his letter. The treatment is scheduled to begin on (date). Should you require additional information, please do not hesitate to contact me at (phone number). I look forward to hearing from you in the near future.

Sincerely,

Your name

I want you to have more concrete chances to get the care you need covered. I know that it will take work and won’t always be easy. It will take energy, which most of us already have challenges with.

I like to think about my future when I am in the middle of the appeal process. What would getting this insurance coverage mean to me? More life? A better life? Then it is worth it for me.  

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.  

Scanxiety: My Fear of Cancer Recurrence

By Cynthia Toussaint, PNN Columnist

Several months back, For Grace’s conference planning committee invited our webcaster, Rich, to join the call to talk logistics about our upcoming virtual “Pain-Cancer Connection” event. Rich is a long-time cancer survivor who’s dealt with decades of chronic pain as a result of his aggressive treatment.

It soothed me to talk with him because I was in the midst of brutal chemotherapy. I could relate when Rich shared his nightmare of getting one infusion too many and lying on the floor weeping after losing much of this tongue. I also understood Rich bungie jumping off a Las Vegas building after his treatment in a quest to find something scarier than chemo.

But that ease turned to discomfort when Rich warned me, “Oh Cynthia, you don’t know yet. There’s so much anxiety that comes with cancer.”

While I’ve long been aware that if triple-negative breast cancer returns, it tends to do so more aggressively in the first year or two, Rich was my introduction to “scanxiety.” We cancer survivors live in often paralyzing fear of a recurrence, one that will likely end us. In fact, I was recently stunned to hear a breast cancer survivor speak publicly of her relief when the cancer returned. She preferred to battle the disease again rather than the anxiety.

Now after sweating bullets through my first post-remission imaging, I can’t help but wonder how much scanxiety is reinforced by our broken healthcare system’s reliance on an endless stream of patients whose wellness would pose a threat to their business model.

I’ve said it before and I’ll say it again: the cancer industry thrives on a culture of fear, intentional or not. I’m certain that’s why patients gratefully say “yes” to every treatment offered without blinking. And that’s why I was looked at like I had two heads when I questioned every proposed therapy, relied on my own research, did everything integratively and said “no” to most of my provider’s drugs, scans and (over) treatments.

Sadly, my scanxiety began the moment I attained remission. My oncology surgeon -- who’s still terrified because I didn’t go with her standard-of-care surgery, even though studies support that as a complete responder I had a better chance at surviving without it – told me to do twice weekly breast exams. She then attempted to comfort me by assuring we’d do surgery after the cancer grew back. Those hyper-vigilant exams made me so tender my coordinating nurse told me to back off.

As my initial every-three-month imaging neared, scanxiety reared its ugly head and seriously messed with my health. I stopped sleeping restoratively and was plagued by nightmares. Obsessing on the worst outcome, I started getting severe headaches while my IBS went through the roof.

My terror went into hyper-drive when I found an inflamed lymph node in my neck, the same side as my former tumor. This fright didn’t just infect the patient.  John developed body-wide hives that looked like eczema on steroids, and my close girlfriends felt like they were having nervous breakdowns.

After my breast scan was clean, I rejoiced with John about how we deliberately made all the right choices. My surgeon broke up the party when she entered the examining room voicing her concern about my neck lymph node. Due to its location being a few inches higher than my breast area and healthcare being its dysfunctional self (every department can only scan a small area of the body), I had to wait another WEEK to find out if the cancer had metastasized.

During that soul-rattling scan the imaging technician said the node was abnormal and that I’d hear from my doctor soon. While John wheeled me to the car, I lost my shit and began screaming in the parking garage. I knew “abnormal” meant I was going to die and that six grueling months of chemotherapy hadn’t helped me in the least. How could I have been so wrong?!

I continued screaming in the car until my screamer gave out, while my stomach knotted and head throbbed. Mercifully, my doctor’s call late the next day told me all was clear. That both relieved and angered me; relief because I was assured another three months on the planet, but deeply pissed off because this healthcare-induced trauma was majorly messing with my cancer-fighting terrain. I make it my priority to practice healthy life-style choices to keep my body and mind well and in harmony.

Toxic Medicine

But the body keeps the score. After that last scan, I got a chemo-induced bladder infection from hell, one that’s still knocking me out despite a week on Cipro. With this infection that appears to be moving into my kidneys, multiple chemo side effects have re-roosted; fatigue, heavy heart throbbing, tinnitus and labored breathing. I find myself in the midst of my most recent outcome of fear-based medicine, and I remain snared in their illness-inducing, money making system.    

Deeper reflection leads me to believe that even my “innocuous” port flushes are part of this web of toxic medicine. Every seven weeks (though they push for four), I visit the infusion center where the nurses honestly seem put off, even hostile, that I’m doing well, smiling and in good spirits.

Apparently my role is to be fearful, inferior and vulnerable, and my upbeat, empowered demeanor rattles them. Rather than celebrating winning my life back or chiming in about simple pleasures like fashion and hair color, they drill me about how my post-treatment is going (what post-treatment?!) and what horrors my next scan might bring. My medical oncologist there is so buried in the fear culture, I schedule my appointments to avoid him.

Breathe.

Thankfully, I saw my saint of an integrative doctor last week who set me straight. Dr. Taw was visibly disturbed when I shared my run-ins with these healthcare providers, and was concerned that their behavior might stir things up and create cancer sparking “stagnation” in my body. Several times, he gave me his full support to stay away from these toxic people as much as possible to hold wellness. I couldn’t agree more.

Still, I am wary of my next scan. Despite every logical indicator telling me I’ll likely be A-ok, these people and their diet of fear embed me with dread. I see more than ever that this doesn’t just apply to my last year plus of cancer care; it also applies to my 38-year wrangling with high-impact pain. These western medicine devotees, while they claim to be healers, are the polar opposite for me. And their negative energy creates illness, rather than mitigating it.

Let’s not have to take a bungie jump off a building to overcome our latest medically-induced trauma. I implore you to stay away from these healthcare providers and their dysfunctional, money-based system as much as possible. To be fair, they do some good – but by a long measure, they hurt us beyond repair, again and again.  And again.

Please seek out integrative healing that is non-invasive and wellness (rather than fear) based. Your body and mind will thank you.  

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

I Deserve To Have My Chronic Pain Managed

By Marguerite Morgan, Guest Columnist

I have lived with chronic pain the majority of my 53 years of life. It’s hard to make the people that cross my path understand that I cannot do things I used to take for granted. Things like attending concerts and other venues, or keeping my home up and my appearance up are the things that I miss and bother me the most. 

Those I love have seen my decline and know that I am truly suffering. The only reason I am suffering is because of the lies told by the CDC. They admitted that their statistics were off regarding overdoses because they combined deaths caused by illegal drugs with those that were prescribed.

These so-called experts turned on those of us who take our opioid medication responsibly and have blamed us for the addiction issues in this country. Laws were made and bills were passed on this false information and now there are millions suffering. 

It's not right that our government continues to uphold the CDC opioid guideline, knowing that we are suffering and medications that will help are denied to us. We are treated like garbage for illnesses, diseases and injuries that doctors can't treat without fear of being raided by the DEA. Their medical licenses are way more important than our quality of life.

Nothing seems to be changing either and it probably won't in my lifetime. But I will continue to fight for those who need advocacy because there are a few good doctors willing to take a chance. 

MARGUERITE MORGAN

We are dying every day either by suicide or from being cut off from pain medication. Our hearts quit because they just can't take the pain that causes.

I just want to know why those that die from abusing drugs intentionally are more important than those of us who take our prescribed medication as directed. It seems life has truly turned upside down and nothing seems right anymore.

I suffer from intractable pain caused by an injury to my spine. I also have inflammatory rheumatoid arthritis, osteoarthritis, Addison’s disease, fibromyalgia and degenerative disc disease, to name just a few of my painful conditions.

I deserve to have this pain managed. I deserve to enjoy and take part in life, instead of just seeing it pass me by through my living room window. 

Marguerite Morgan lives in Washington state.

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

Healthcare Is a Human Right That We Deserve

By Jennifer Kain Kilgore, PNN columnist

I shouldn’t have to write this. But here I am because of headlines like these:

“FTC Refunds Almost $3.9 Million to Purchasers of Deceptively Advertised Quell Wearable Pain-Relief Device”

My body went numb after reading that. The Quell, which I wore for four years, that I blogged about, that I recommended to friends and family? That Quell?

The Federal Trade Commission slapped parent company NeuroMetrix for deceptive advertising. Specifically, the company was cited for claiming the Quell works throughout the whole body and not just where it’s worn.

“NeuroMetrix settled the case – without admitting or denying the allegations – for $4 million. The company also agreed to stop claiming that Quell provides relief for chronic or severe pain beyond the knee area where the device is worn,” PNN reported.

Soon enough I was receiving texts -- “Is this true?” “Does it not work?”

It worked for me, but that’s not why I’m writing this. My testimonial is still and will remain on NeuroMetrix’s website. The company didn’t ask me to come to their defense. Despite the bad press, that gadget worked for me.

NEUROMETRIX IMAGE

Getting a $50 refund from NeuroMetrix in my PayPal account, though? The company’s silence and tacit admission made a helpless rage boil inside where anger has been simmering for weeks and months and years.

It made me as angry as when desperate pain patients called my law office, asking if I would draft legislation or talk sense to their doctors. Or when a genuinely good product came on the market but took advantage of customers. Or when the Sackler family didn’t go to prison after their pharmaceuticals created the conditions for the national opioid epidemic to truly explode. That bubbling anger began to rise.

Where should I direct this rage? At the callers? At the makers of the SpineGym, who took their crowdsourced money and failed to deliver on their promises? At the Sacklers? No, of course not. It’s not about them. My anger is bigger than that.

I shouldn’t have to write a reaction piece about the FTC’s decision. I shouldn’t have to draft laws to change a healthcare system in which pain patients are discounted, dismissed, and even overlooked.  Sometimes our limitations and physical pain prevent us from seeking the help we need.  

I shouldn’t have had to write for Pain News Network in the first place, though I’m thankful for the opportunity to do so. I became a columnist in order to try all the gadgets claiming to cure back and neck pain. If my doctors wouldn’t help me, I would help myself.

And there it is.

A record-breaking number of citizens have already voted. Despite their overwhelming voices, a Supreme Court justice was just appointed whose legal interpretation could dismantle the Affordable Care Act, which is on the Supreme Court Docket on November 10, just seven days after the most important election in history.

If you’re reading this, health insurance is crucially important to you or someone you love. Right now, our president’s legal team is in court attempting to kill the ACA without any kind of replacement during a global pandemic that has killed over 231,000 Americans.

But that’s not why I’m writing this.

I used to blog about my journey through the healthcare system. By the time I’d graduated from the Quell to an implanted spinal cord stimulator (which also works), I’d exhausted myself. It was time to focus on finally, finally healing. You know, being a normal person again.

The spinal cord stimulator -- controversial for sure, and not a surefire bet -- ended up working beyond my wildest dreams. Even though I’ve pulled on wires and scar tissue, my life has been partially restored. My doctor said the Quell was a good indicator as to whether a SCS would even work. If the Quell helped, so would a spinal cord stimulator.  

Before the SCS, I wasn’t able to consistently work as an attorney; I could barely leave my house. I was dependent on my husband for everything from insurance to carrying bags of groceries.

After the SCS, I can do yoga and pilates. I can lift laundry baskets. I can go to work and sit through a two-hour deposition. I can be an actual person again.

But that’s not why I’m writing this.

I shouldn’t have spent sixteen years of my life begging for help. I shouldn’t have to become a patient advocate and a writer for an online publication because I couldn’t otherwise afford pain-relief devices.

I shouldn’t have to write this.

I shouldn’t have to fight my insurance company to get my treatments covered. I shouldn’t have to stagger bill payments to various hospitals so as not to overdraft my account. I shouldn’t be paying for my spinal cord stimulator more than a year after its implantation.

I shouldn’t -- we shouldn’t -- have to do these things. We shouldn’t have to fight so hard to live in what’s supposedly the greatest country on earth.  What’s so great about living in fear? Fear of the unknown, the future, access to healthcare resources, and effective treatments? I’ve lived in fear for long enough, and so have you.

I shouldn’t be here. You shouldn’t be here, reading this. This website shouldn’t exist, and we shouldn’t have to fight so hard. But one in five Americans adults has chronic pain, and something must be done.

Healthcare is a human right, and we deserve it.  So VOTE.  Protect your loved ones by protecting healthcare.

Jennifer Kain Kilgore is an associate attorney at MALIS|LAW, working in civil litigation. She has chronic back and neck pain after two car accidents. 

U.S. in ‘Fragile State’ as Election Nears

By Roger Chriss, PNN Columnist

The United States is about to have its national election. And for the first time in American history, the election will happen amid a pandemic.

The country is deeply divided, unsure about how to address the coronavirus, what to do about health insurance or drug overdoses, and which way to move forward on social justice, racial inequality and socioeconomic divisions.

In the realm of public health, the coronavirus predominates as the country faces another surge in infections, with a record count of nearly 100,000 new cases Friday. Hospitalizations and deaths are rising across the nation.

“As we enter the coming months, which include a national election and many holidays, our country is in a fragile state. Many people are understandably worried about the days and weeks ahead,” Children’s Hospital of Philadelphia warned in a blog post.

“Wearing masks and resisting the temptation to take part in medium to large gatherings that include people who are not members of your immediate family/small bubble are things we can and must do to protect ourselves and our loved ones. We encourage all to be safe out there, and to get out and vote safely, if you have not done so already.”

In addition to the pandemic, overdose deaths are rising again, largely due to illicit fentanyl and other street drugs. The United Nations reports that synthetic cannabinoids are also a rising threat. And if all this weren’t enough, Washington state is seeing an invasion of murder hornets.

“Whatever the outcome of the election, the coming winter will be difficult. And whoever occupies the White House on January 21 will probably have to deal with another major epidemic before his term is over,” journalist Ed Yong writes in the Atlantic. “The U.S. has now clearly seen what happens when a pandemic occurs under Trump. It is an experiment that no one should ever want to rerun.”

The election process itself is fraught this year. NPR is reporting that hundreds of polling places in Iowa will be closed on Election Day due to the coronavirus. Voting for people quarantined or newly diagnosed with Covid-19 could also be difficult if they can’t vote by mail.

The election outcome is uncomfortably uncertain. Politico assembled a day-by-day guide to all the possible outcomes from November 3 to January 20, from recounts to Supreme Court intervention. If President Trump loses, Politico also put together a list of what he might do during his remaining days in office, from mass pardons to a revenge campaign against the “Deep State.”

Election Pain

This is the stuff that nightmares are made of. Some people are abandoning social media, going off Twitter or internet discussion forums, or deleting news apps and silencing their phones. Others are engaging in “radical self-care” by playing video games or binging on old TV shows all day long, or hibernating their way to November 4. There is no end of online discussion about how to get offline and avoid discussion of the pandemic, politics and election outcomes.

But after the election, some things will not change. People with chronic disorders will still have the same diagnoses, the same treatment options, and the same prognoses as they did before. Election outcomes matter, but not for some things.  

Most people with chronic painful disorders have already survived far worse than the coronavirus or this election. Election pain may lead to a sleepless night or two for some people, but chronic pain can lead to sleepless nights for years. Insomnia is a routine part of small fiber neuropathy, complex regional pain syndrome and ankylosing spondylitis.

Election pain may create digestive problems like GERD or IBS for some people, but chronic painful disorders can include a lifetime of gastrointestinal distress. The ability to eat comfortably and digest reliably is not something that people with Ehlers-Danlos syndrome, pancreatitis or inflammatory bowel disease enjoy.

Election pain may make the time after November 3 seem uncertain, but for people with disorders like epilepsy, multiple sclerosis or sickle cell disease, that uncertainty is normal. Life is never stable when your body may misfire at any time.

Election pain may make life even harder for people with these disorders. The best we can do is stick to our routines and stay focused on our health. Come the results of the election, we can be gracious. And if all else fails and everything is hellish, just keep going.

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. 

What I Learned About Meditation and Acceptance

By Mia Maysack, PNN Columnist

Recently I was asked how I've managed to deal with agonizing pain every day for over 20 years. The answer is far from simple, as it has been an extraordinarily long road that I'll continue to travel for the rest of my life.  

After over a decade of attempting mainstream remedies such as pills, injections, procedures and other therapies, I reached a point of hopelessness that led to contemplating the possibility of giving up. I had become tired and sick of being sick and tired. 

I still am! 

At the beginning of my holistic journey, I felt as though all my options were exhausted. Enough already with the corporate approach to medicine, along with being treated as either a drug seeker or experimental lab rat. 

To be clear, I'm tremendously grateful for all the avenues I've been able to travel, as well as the providers who did what they could to help me along the way. I am even thankful for the doctor who initially misdiagnosed my ear infection as “swimmer’s ear” -- even though it almost cost my life and led to a permanent state of discomfort. 

I wouldn't be who I am without those experiences, nor would I now be in this position to assist others in the treacherous journey that is chronic illness. 

Acknowledging grief, as real a symptom as the hurt itself, was a first step for me. I had to come to terms with knowing what I experienced was not a personal punishment, and also develop a relationship or coexistence with it that was mandatory for my survival.  

After growing in affirmation of those truths, I was then able to wrap my mind around acceptance. That didn't mean I liked the situation and I still don't! My illness doesn't define who I am as a person or where I'm able to go from here -- based on the things that I can control.  

This would be about the time some of you may question the merit of what I'm speaking about. So let me take this moment to break it down.  

Is an altered state of mind going to address or correct all my problems?  No.

Am I suggesting the idea that "positivity" cures?  Also no.  

I am reminded of a medical professional who endured a traumatic spinal injury and was told they'd never walk again. This began a four month long meditative process for this individual, who envisioned having surgery to the point of feeling its physical effects. Needless to say, they are not only walking again, but still practicing medicine.

Of course, there are things that cannot be "fixed." But shifting gears in how we think about a problem cultivates space for an opportunity to no longer dwell on what we're unable to change. Instead, we can invest and focus on what we can change.  

Dwelling isn't the same as grieving, so give yourself permission for having thoughts of "screw this!"  

Exploring new territory is what it means to be human. When we decide our experiences are opportunities for evolution, there's always a chance of merging onto an “on-ramp” that leads to personal growth and acceptance. 

That's another benefit of meditation that I encourage you to study for yourselves. When our bodily systems are more relaxed and we're breathing adequately, there's often improvement in how we’re feeling. Each moment consists of evolution because things are always changing, 

It took a while, but I've come to embody that same sort of energy. There's a lot throughout the world I can’t do very much about. But there are small things I can handle with great love, which includes coexisting with the different aspects of my life. Compassionate nurturing is a monumental and radical task, but it's vital and necessary.  

Mia Maysack lives with chronic migraine, cluster headache 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 Devil Effect on Patients with Pain

By Dr. Lynn Webster, PNN Columnist

Society's response to pain management has shifted over the years. While pain treatment today often generates controversy, in the past it was viewed differently.

During the U.S. Civil War, a wounded soldier who was in agony was often given enough chloroform “to render him insensible to pain." Afterwards, soldiers may not have recalled the pain they felt, even if they remembered having surgery. We were concerned enough for our soldiers to ease their suffering with the most effective medication that was available.

At other periods in our history, society worried more about the risks of treating pain than the debilitating and sometimes lethal effects of the pain itself. At times, we even questioned whether pain was real and whether people were just inventing symptoms to receive attention or drugs.

People with pain have often been stigmatized. They have been expected to just tough it out, and those who couldn't were accused of being weak.

The Pendulum Swings Toward Empathy

In the 1990s, most people dying of cancer experienced excruciating pain, despite the fact that doctors had the means to help them. Opioids could ease their suffering. And a consensus began to grow in the medical profession that prescribing opioids for cancer-related pain was the right thing to do. Soon after, doctors began prescribing opioids for non-cancer pain, such as arthritis. The number of prescriptions increased.

Treating pain with opioids became acceptable -- even expected -- when the alternative was to let people suffer. It seemed reasonable at the time. There was little evidence then that opioids would cause serious harm if people used the pain medication as directed.

We always acknowledged that a subset of the patient population was at risk for abuse or addiction. Pain doctors like me did the best we could for patients with the research that was available to us at the time. Perhaps, in some cases, we would do things differently now.

Casting Blame for the Opioid Crisis

Ultimately, “overprescribing” was recognized as one of the contributors to America’s drug crisis. Looking back, it is easy to cast blame. We now have better information about the risks of using opioids. But there were few effective tools at the time to control pain, so prescribing opioids seemed like a valid alternative to letting patients suffer unnecessarily.

As more opioids were prescribed, there was a corresponding increase in all drug overdoses. That set off alarms, even though the causes of overdoses are myriad and complicated, and there is no simple correlation between rising opioid prescriptions and increased overdose deaths.

Societal attitudes began to shift again in the first decade of the 21st century. Families who lost loved ones to overdoses were looking for someone to blame. There were public and private demands to hold someone accountable for their deaths. The initial target was the pharmaceutical industry.

This wasn't anything new. The American public has more hostility toward Big Pharma than any other industry. A 2019 Gallop poll found that the public felt more distrust of Big Pharma than they did of the federal government!

The news media covered the tragedies of teenagers and young adults who were dying from overdoses. Often, those deaths involved opioids. The media also covered stories of families torn apart by addiction. Then the media's narrative shifted to allegations of deceit, greed and cover-ups by the pharmaceutical industry.

At first, they focused on Purdue Pharma. The company was making billions of dollars from OxyContin, and they were accused of irresponsibly promoting its use. The federal government filed a lawsuit against Purdue Pharma and this week announced a $8.3 billion settlement with the company.  

I recall the initial complaints about OxyContin were unrelated to the increased number of opioid related overdoses. Instead, Workers Compensation groups were complaining about the skyrocketing cost of the drug. In the late 1990’s, I recall hearing the medical director of Utah’s workers’ compensation program speak to the local pain society. He angrily insisted that the cost of OxyContin was exploding and must be stopped.

A new "Opium War" had begun. But this time, it was not between the Chinese and British. Instead, it involved health insurers and opioid manufacturers.

Chasing a Pot of Gold

The need to blame someone for the overdoses and make them pay for the harm opioids caused accelerated. Opioid manufacturers and physicians were in the cross-hairs of policymakers and law enforcement agencies.

Opioid distributors and patient advocacy groups were also accused of contributing to the drug crisis. It was alleged that distributors knowingly and irresponsibly supplied communities with large amounts of pills that far exceeded the amount needed for medical purposes. Advocacy groups were accused of being front organizations for opioid manufacturers. Whether or not distributors were irresponsible depends on one’s perspective, but the accusation about patient organizations was often baseless and malicious.

Of course, the bandwagon of accusers grew as the potential pot of gold increased. Lawsuits filed by states, cities and counties could result in a golden egg if they could convince a sympathetic jury or judge that they had been wronged. The sympathies of the public turned more and more against the drugs used in pain treatment.

The Devil Effect Harms Us All

Greed and the harm it causes is a well-known story. However, what is not as well appreciated is how it leads to a cognitive bias called the "devil effect" -- in which one bad quality creates the impression that there must be only negative qualities associated with a person or entity.

The belief that Big Pharma is inherently bad makes it difficult to appreciate the good things (such as vaccines and cures) that come from the industry, and to separate it from the bad things. Today, when doctors consult with or accept any funding from the industry, particularly the companies that make opioids, it is often referred to as “being in bed with the devil.”

Society’s belief that Big Pharma is inherently evil helps explain why people in pain are struggling. The truth is, Big Pharma is not intrinsically bad -- although there are some bad actors in the industry -- and drugs used to manage pain are essential partners in healing when used appropriately.

Our tendency toward black or white blanket perceptions -- and our choice to not learn about the complexities that would allow for a more balanced approach in our reasoning -- has consequences for every aspect of society. When it comes to pain management, the devil effect has yielded the terrible unintended cost of suffering by innocent people.

The pendulum eventually may swing back toward empathy for people who are suffering, but not until more people recognize the influence the devil effect has on society's attitudes towards Big Pharma, opioids and people in 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. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find Lynn on Twitter: @LynnRWebsterMD. 

Great Progress Being Made in Treating Arachnoiditis

By Dr. Forest Tennant, PNN Columnist

About 5 years ago, most medical practitioners had either never heard of Adhesive Arachnoiditis (AA) or thought it was a spider bite. Today, almost all practitioners in the modern world have heard of AA. Many now understand it and some even treat it. A few are trying some innovative new approaches.

AA is a chronic inflammation that starts inside the spinal canal that can lead to severe suffering, neurologic impairments and a shortened lifespan. Once inflammation starts, it apparently never, or rarely, goes totally away.  

Treatment and prevention in recent years have greatly reduced the occurrence of some serious neurologic impairments and autoimmune complications of AA. The most obvious decrease in new cases reviewed by the Tennant Foundation are those of upper and lower extremity paraparesis (partial paralysis) and total paralysis, which are rapidly disappearing.

Urinary and bladder impairments that require catheterization are also hardly seen. And the autoimmune manifestations of arthritis, thyroid deficiency and carpal tunnel are disappearing.

Why the improvement? Awareness, thanks to patients, social media and advocates who have educated the medical profession about AA. Fewer epidurals, early treatment and emergency measures have all helped. The development of protocols for prevention, emergency intervention and on-going treatment have been essential.

Major Remaining Problems

Persons with AA are still having difficulty, in some communities, finding medical practitioners who are comfortable and willing to treat AA. The major complication is the development of constant pain and the intractable pain syndrome.

The key to preventing AA and stopping its progression is early treatment. Our research has clearly shown that AA is almost always preceded by one of 3 intraspinal canal inflammatory conditions:

1. Protruding, degenerated intravertebral discs.

2. Cauda equina inflammation.

3. Arachnoid inflammation (i.e. plain arachnoiditis) due to collagen disorders or needle injury.

Some intraspinal canal inflammatory disorders always precede AA. These disorders should be aggressively treated to prevent AA.

Select Corticosteroids Essential for AA

We believe all persons with typical AA symptoms and documentation of the disease on an MRI must take one of two corticosteroids (CS): methylprednisolone or dexamethasone for the spinal canal inflammation and pain of AA.

Currently there is no other medication agent that consistently and predictably suppresses intraspinal canal inflammation and reduces pain. Do not expect to halt progression or have much recovery if you do not consistently take a CS.

Dexamethasone and methylprednisolone are the preferred CS’s because they cross the blood brain barrier, enter spinal fluid and act on glial cells. Prednisone and hydrocortisone are not as consistently effective as dexamethasone and methylprednisolone, which should be taken in low doses.

1. Maintenance-low dose of dexamethasone (.5 to .75mg) or methylprednisolone (Medrol) 2 to 4 mg on 2 to 5 days a week. Skip days between dosages. An alternative is a weekly or bi-monthly injection of methylprednisolone or dexamethasone. Injections are usually the answer to corticoid sensitivity or gastric upset.

2. For flares, a 6-Day Medrol Dose Pak or an injection of methylprednisolone or dexamethasone, preferably mixed with a standard dose of injectable ketorolac.

The fear of corticosteroids comes from daily use of high doses, not from low, intermittent dosages. Some persons with severe asthma and rheumatoid arthritis must take a corticosteroid for years and don’t experience serious side effects.

Forest Tennant, MD, MPH, DrPH, is retired from clinical practice but continues his groundbreaking research on the treatment of intractable pain and arachnoiditis. This column is adapted from bulletins recently issued by the Arachnoiditis Research and Education Project of the Tennant Foundation. Readers interested in subscribing to Dr. Tennant’s bulletins should send an email to tennantfoundation92@gmail.com.

Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

Can Herd Immunity End the Pandemic?

By Roger Chriss, PNN Columnist

The latest round in the ongoing public health debate over the pandemic pits two online petitions against each other: the "Great Barrington Declaration" versus the “John Snow Memorandum.” The former focuses on natural herd immunity, while the latter emphasizes controlling community spread through lockdowns, masks and other public health measures.

The Barrington Declaration has garnered support from the Trump administration because it calls for schools and businesses to reopen, and for life to return to normal for “those who are not vulnerable” to the virus.

“The most compassionate approach that balances the risks and benefits of reaching herd immunity, is to allow those who are at minimal risk of death to live their lives normally to build up immunity to the virus through natural infection, while better protecting those who are at highest risk. We call this Focused Protection,” the Declaration states.

The John Snow Memorandum, named for the famed British physician who halted the 1854 London cholera outbreak, states that "Any pandemic management strategy relying upon immunity from natural infections for COVID-19 is flawed. Uncontrolled transmission in younger people risks significant morbidity and mortality across the whole population."

The Declaration’s Fundamental Flaws

The Declaration claims that “all populations will eventually reach herd immunity – i.e. the point at which the rate of new infections is stable – and that this can be assisted by (but is not dependent upon) a vaccine.”

But we do not know this. Many diseases, from malaria to Ebola, continue to rip through populations without reaching herd immunity. It is entirely possible that Covid-19 will reach a similarly perilous “equilibrium,” becoming endemic until the arrival of a vaccine. At this point we don’t know enough about the coronavirus SARS-CoV-2 to make any strong claims that herd immunity will “eventually” happen.

Moreover, the “Focused Protection” championed in the declaration assumes that we have adequate testing, contact tracing and isolating to protect the vulnerable, though at present the U.S. does not. It further assumes that Covid-19 doesn’t have a significant disease burden, even though there is mounting evidence that the disease can cause considerable and long-lasting harm in otherwise healthy adults and children.

The Declaration assumes that durable immunity to the virus results from infection. But there are a handful of documented cases where reinfection has occurred, such as a 25-year old Nevada man who became seriously ill during his second bout with Covid-19.  It’s not clear how “durable” immunity is.

As Yale immunologist Akiko Iwasaki explains in a recent commentary in The Lancet, “reinfection cases tell us that we cannot rely on immunity acquired by natural infection to confer herd immunity; not only is this strategy lethal for many but also it is not effective."

The experiences of Arizona, Florida and Texas over the summer show that “Focused Protection” doesn’t work in the real world. All three states were hit hard during the summer surge, with hundreds of thousands of cases and tens of thousands of deaths. As we head into the fall, we’re now seeing a surge of new cases in the upper Midwest.

The Memorandum’s Practical Challenge

The John Snow Memorandum states that “controlling community spread of COVID-19 is the best way to protect our societies and economies until safe and effective vaccines and therapeutics arrive within the coming months.”

This is credible, given the experiences of Germany, New Zealand, South Korea and other nations that managed to control virus spread and minimize death and disease through a mixture of public health measures. They created national plans for testing, tracing and isolating, and with consistent public health messaging that minimized socioeconomic disruption. Lockdowns were not always necessary, either. Japan avoided a national lockdown, instead controlling spread with strong public health measures.

The United States, by contrast, has failed to do these things. We are not generally good at public health, as the worsening opioid overdose crisis has clearly shown. The failures in the overdose crisis were arguably prologue for the uncoordinated and undisciplined approach the U.S. has taken to the pandemic.

The Memorandum’s recommendations are laudable, but they will be hard to implement, even though current projections suggest over 170,000 more deaths and millions of new cases of Covid-19 in the coming months.

The U.S. needs to ask itself two questions. First, how did we get to a point where the Great Barrington Declaration even sounds like a good idea? Second, what can we do to find a better way forward, as suggested by the John Snow Memorandum, to avoid additional deaths and disease? Winter is coming and the coronavirus will have the run of the country unless we step up to stop it.

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. 

Are You Living in the Matrix?

By Dr. Lynn Webster, PNN Columnist

A recent Netflix documentary, "The Social Dilemma," illustrates how social media networks are selling each of us as commodities to advertisers. Tristan Harris, a former Google employee, points out that platforms such as Reddit, Facebook, Twitter and Instagram make money by allowing advertisers to target members who are interested in their products or services.

That means anyone who uses "free" social media are not just consumers. We are the products being sold.

We’re allowing our brains to be manipulated by sophisticated marketing and artificial intelligence (AI) designed to change our behavior. Each time we “like” something or stay on a web page for more than a second, we provide technology companies with additional knowledge about who we are and what makes us tick. Each click helps AI become better at manipulating us, deciding what we see and what we don’t.

Because the things that fill one person's newsfeed may never make their way into another’s, social media networks shape our version of reality while they polarize society. Unfortunately, “fake news” is sometimes more profitable to advertisers than real news. We have segued from living in the Information Age to subsisting in the Disinformation Age. This is especially frightening when we see how much influence conspiracy theories have in our culture today.  

According to the documentary, we have essentially isolated ourselves in a bubble of technology. Loneliness and depression are rampant in our society, and people interact less in the real world than they do online. When others "like" our posts, we get a hormonal rush of chemicals -- and when it dissipates, we crave another hit. The need for approval and belonging keeps us clicking.

As "The Social Dilemma" asks, "How do you wake up from the matrix when you don't know you are in the matrix?"

People with Pain Live in the Matrix, Too

The online audience for messages has become fragmented for people with different views. This limits the reach of any particular message to those who share the same beliefs or problems. That puts people living with pain who reach out to others through social media at a disadvantage they may not even understand.

The documentary makes the point that the only industry besides social media that uses the term “users” is the illicit drug world. People living with pain or addiction are vulnerable to the same dopamine rush that keeps us clicking to receive affirmation from others who share our experiences.

People in pain desperately want to be heard by people who can help them. But, because of AI, only those who already tend to be supportive of people in pain are likely to see their posts.

The very nature of chronic pain and addiction narrows people’s worlds. So does social media. It has a compounding effect. As a society, we need to understand that our world becomes narrower with each click.

Think of those you unfriend or the people who block you on social media. They are the ones you need to hear from, because they are people who have different views from yours. It may feel comfortable to stay within your own lane, but that won't help if your goal is to understood the world and help change it for the better.   

Bursting Your Information Bubble

There are general principles we can all use to sort the truth from the lies on the internet. One is to recognize that if you have a strong emotional response to an online message, you may have become the successful target of manipulation. Take a deep breath and tell yourself the manipulators found a way to trigger your dopamine release. Remember that the message you saw may be only partially true -- or not true at all.

Before you share a post or believe it yourself, verify the source. Check out the veracity of the story on Snopes or some other fact checker. Seek out sources other than those that appear in your timeline or on your news feed. Instead of trusting your search engine, proactively log onto news sites with opposing viewpoints.

If the stories you find feature quotes, go to the original source and see if the message was taken out of context. The greater your emotional reaction to the message, the greater the chances are that it is inaccurate, misleading information.

“The Social Dilemma” website offers a toolkit to “realign your relationship with technology” and explore these issues -- including what social media is doing to our democracy -- more deeply.

We can't ban the internet. We wouldn't want to, even if we could. There are obvious benefits to digital communication, and we can't put the genie back into the bottle.

However, if we don’t want to be trapped in a dystopia where humanity is controlled by a manipulated reality, we have to realize that "free" online services are anything but that. The cost is the truth. When we sacrifice a balanced view of the world because of our desire to belong, we risk locking ourselves in the matrix. 

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. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find Lynn on Twitter: @LynnRWebsterMD. 

How to Rekindle Romance While Living with Chronic Illness

By Barby Ingle, PNN Columnist  

Living with chronic illness can put a strain on any relationship, particularly marriages. To help other couples, my husband Ken and I have I decided to share our learned wisdom on how to rekindle romance in a chronically ill partnership.   

My first suggestion is to keep track in your pain diary so that you can remember the details. Record at what point during sexual intimacy that pain occurred or increased, and what the circumstances were when your pain subsided. Putting your thoughts on paper can help you understand the underlying issues and complications, and regain control of your intimacy.

Although Ken and I did not use a therapist, there are techniques that a therapist will suggest that can help a chronically ill person normalize their symptoms, which boosts self-esteem and lowers feelings of isolation. Improved self-esteem can enhance virtually every aspect of your life, including strengthening your relationships.

A life change due to health problems can be a common trigger for lowering how you perceive yourself. The challenge is to identify that this is going on and create an intimate connection with your partner at the same time.  

Take a look at what you are doing. Are you alienating yourself or your partner? If so, why? Think about your behaviors and beliefs. Are they holding you back from intimacy?

Consciously thinking positive thoughts can boost self-esteem, but it takes practice. How you approach it can make all of the difference. Start with simple words and reminders to yourself. Then reconnecting with your partner will become easier. 

Rekindling romance could be as simple as a few words, a gesture, or a look or touch that will let the other person know you are okay. Be conscious of this each day, so that not a day goes by without a kind word or gesture, even if you are not having sex daily. And really, who does that when they’re in constant pain?

Try this the next time you are washing your hands at the bathroom sink: Write “I love you” on the mirror with a soapy finger or lipstick. This can help create an intimate moment.  

Be the one to take control if your partner is afraid that they will hurt you further because of your current pain level. Be sure to reach out and let them know you would like to have a sexual experience. Say, “Do you want to have sex right now?” or whatever cute, sexy or clever way feels natural to you.  Lead the experience to relieve their worry.

Spouses often have different sexual desires. Turning your desire totally off just because of pain can cause harm to your relationship. Your partner probably married you expecting a healthy sexual relationship. Holding back on intimacy can lead to the end of a marriage or even infidelity.

The last thing a chronic pain patient needs is more discomfort. But when intimacy increases pain and leads to avoiding sex or even cuddling, the relationship suffers. Don’t let this be the beginning of a vicious cycle of no sex.  

What can you do to increase the connection, romance and sex that you have with your partner? When you are talking, try to share your struggles about staying close. You can also share positive thoughts, such as sex helping you cope with chronic pain. 

I hope that these tips can help you rekindle any lost sparks with your partner. All those things you don’t say could be keeping you and your partner on different pages. Turn on the power of romance and make your relationship stronger.

Believe me, I understand how difficult it can be to push yourself to be romantic when all you want to do is sleep or cry from the pain. Having a close relationship physically with your partner can make a huge difference in many areas of your life.

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.