There Is Another Drug Reform Bill the Senate Must Pass

By Michael C. Barnes, Guest Columnist

After last month’s midterm elections, the U.S. Senate passed the Medical Marijuana and Cannabidiol Expansion Research Act. The House had passed the bill in April, and President Biden signed it into law on December 2. The new law has been described as “modest” because it mostly facilitates research on marijuana and cannabidiol to support the development of medications for approval by the Food and Drug Administration (FDA).

The law also eliminates a longstanding regulatory roadblock that has prevented marijuana research; hindered the development of marijuana-derived, FDA-approved medications; and led to 37 state-regulated markets for marijuana products that do not meet federal consistency, purity, and potency standards. New research can be expected to yield marijuana-derived medications that the FDA can approve.

There is another regulatory burden that the Senate must eliminate before the end of this year. This change in federal law would also be modest, but it would facilitate access to treatment for opioid use disorder (OUD), which is essential amid the nationwide fentanyl poisoning crisis. S. 3257 would expand the time health care providers can hold long-acting, injectable buprenorphine (an FDA-approved medication for OUD) from 14 days to 60 days. It’s that simple. But like the new marijuana research law, the modest change will make a significant difference.

In the 12 months that ended June 30, 2022, 102,842 people died of a drug poisoning. Of those, 69,150 involved synthetic opioids, predominantly illegal fentanyl. Facilitating access to evidence-based treatment for OUD is more important now than ever. Changing the law cannot wait until the next Congress gets up and running.

S.3257 would amend the Controlled Substances Act, which currently requires that a health care provider administer injectable buprenorphine OUD medication to the patient named on the prescription within 14 days after the medication was delivered to the provider. The supposed purpose of the 14-day limit is to prevent the diversion of the medication to the illicit market.

But in 2020, the Government Accountability Office (GAO) reported that “all of the provider groups GAO spoke with said that diversion of injectable … buprenorphine is unlikely, and representatives from three of the six provider groups said that the design of these formulations reduce opportunities for diversion due to how they are administered.”

For patients and providers, the 14-day limit is too short considering the coordination required to facilitate injectable buprenorphine prescribing, insurance coverage and payment, delivery and receipt, and appointment scheduling and attendance. Sixty days are necessary to ensure that medication administration may take place at a time when the patient, provider, and medication are available.

Additionally, the 14-day limit wastes valuable health care resources and places patients’ recovery and lives at risk. For example, if an insured patient is not able to attend a medical appointment on or before the 14th day after the injectable buprenorphine was delivered to his or her provider, the medication must be disposed of.

It is unlikely that an insurer would pay for a replacement product, and it is common for patients not to be able to pay for medications out of pocket. As a result, a patient may be forced to go without a week or months’ worth of medication for OUD. This situation can put the patient at risk for a recurrence of OUD symptoms, active substance use, poisoning by illicit substance, and death.

In June, the House of Representatives passed H.R. 7666 with broad bipartisan support. Section 264 of H.R. 7666 contains a provision expanding the 14-day limit to 60 days.

In passing the marijuana research act, the Senate proved itself willing and capable of enacting modest yet meaningful drug reforms during its lame-duck session. To prevent drug poisonings and avoid wasting lifesaving medications, the Senate must do so again by expanding the 14-day limit to 60 days.

Michael C. Barnes is the managing attorney for Sequel Health Law. He serves as counsel to Aimed Alliance, a not-for-profit health policy organization.

The goal of Aimed Alliance is to create a society in which consumers can make informed and individually appropriate decisions about their health care, without those decisions being overridden by third parties.

My Story: Why We’re Fighting the DEA

By Louis Ogden, Guest Columnist

I have been troubled by severe and chronic intractable pain since childhood, beginning at age 6.  I am now 72 years old. My earliest memories of pain are of aching in my legs so bad I remember crying myself to sleep.  My parents took me to doctors who said the aches were “growing pains” that would go away as I got older. 

My pain gradually got worse as I grew older and expanded to be body-wide. The worst pain of all was in my neck and upper back, along with incredibly severe head pain. It felt as if my skull was being crushed in every direction. I first remember having the head pain at age 12, but doctors had no answers for my parents and me. 

I finally got a diagnosis of fibromyalgia from a family doctor in 1990 at age 40. I can still remember his exact words when I asked him if there was anything he could give me for the pain.   

"Yes I could, but I won't because it would require opioids and you would be a junkie within two weeks,” the doctor said.  

I carried on with my life, usually with a tin of Excedrin in my pocket that I took to get me through each day. I did have many symptoms of fibromyalgia and it was good to finally have a diagnosis, but it didn’t seem to explain the crushing head pain.  

The pain grew so bad in my 40’s that I could no longer stand to do the demanding physical work required of an electrician and was forced to retire early. 

I was couch-bound most of the time and went on a 13-year search to find a solution to this painful existence. 

I saw many physicians and tried many treatments and medications, including opioids. Unfortunately, none of the therapies or medications eased my pain to tolerable levels. 

LOUIS and kristen OGDEN

Finding Relief With High Doses

In 2010, I sought out more aggressive pain care using high-dose opioid therapy as a last resort.  Dr. Forest Tennant of California took over my care. I think it was at my third appointment with Dr. Tennant when he told my wife Kristen and I that I probably would not have a very long life. I was 60 when he told us that bad news, but I am now 72 and still kicking thanks to his treatment protocol.   

After a thorough review of my medical records, a physical evaluation and various assessments, Dr. Tennant prescribed OxyContin, as well as oxycodone and morphine for breakthrough pain. He titrated me up to where I was comfortable and enjoying the highest quality of life I’d ever had as an adult.  The daily dose I was taking was close to 3,000 morphine milligram equivalent (MME), which is considered quite high. 

For 8 years, I continued on that same regimen. I did not need, nor did I ask for a higher dose, as I was doing great on the daily dose as stabilized.  

Dr. Tennant eventually diagnosed me with Arachnoiditis and Ehlers-Danlos Syndrome (EDS). These rare, but very painful syndromes account for my body-wide, complex, constant and severe pain, including the crushing head pain. I believe I inherited EDS from my mother, her mother, and the maternal line of descent going back at least 6 generations. The exact causes of my need for such high doses of opioids may never be proven, but probably include anomalies of absorption, metabolism and receptor damage due to EDS.  

Once titrated up to an effective dose, I was a very happy, well-adjusted person with a good quality of life, no longer couch-bound in agony and once again able to participate in social activities and perform household chores. My medicine enables this, and I have no sensation of pleasure or “high” of any kind. In fact, people that I meet have no idea that I am on a very high dose of opioids. I do not slur my words, nor am I disoriented. 

The DEA Gets Involved  

After Dr. Tennant was forced into retirement by the DEA in 2018 over unsubstantiated allegations of drug trafficking, I moved on to another doctor in California who kept lowering my dose. It left me not feeling well enough to stay active and enjoy my life, so I moved on to become a patient of Dr. David Bockoff, who assured me at my first appointment that he would do his best to help my pain.  He increased my dose to a level that allowed me to be much more comfortable.   

As PNN has reported, the DEA last month suspended Dr. Bockoff’s registration to prescribe opioids and other controlled drugs, which soon led to the death of one of his patients. Danny Elliott was so distraught over losing his pain medication that he committed suicide, along with his wife Gretchen. The Elliotts were friends of ours and confidants, as we have dealt for years with many of the same problems finding appropriate pain care.  

I am also now facing a life with no pain control and the very serious complications of withdrawal and untreated constant, severe pain.  This situation is very frightening to me, as my blood pressure may spike and I could possibly die of heart failure, an aneurysm or a stroke when/if I run out of medicine.   

The families of several of Dr. Bockoff’s patients, including my wife and I, have pooled our resources and retained the services of an experienced, well-qualified attorney who views our case as a violation of our civil rights. To the best of our knowledge, this is the first time that abandoned pain patients have fought back in such a manner.  If we prove our case with the DEA, the suspension order that prevents Dr. Bockoff from prescribing our medications could be lifted and we will get our good doctor back.   

If we do not win at this stage, we will take our case to the next legal step. In the meantime, some 240 patients of Dr. Bockoff are left with no help and no access to life-saving medications.   

It is my understanding that a few more pain management physicians are considering leaving their practices in the near future. As a result, thousands of additional pain patients may soon lose their lifelines to the medications they so desperately need to function. The DEA has a lot of blood on its hands, with possibly more to come. 

Louis Ogden and his wife Kristen live in Virginia. Dr. Tennant and the Tennant Foundation give financial support to Pain News Network and sponsor PNN’s Patient Resources section.  

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it. Send your stories to editor@painnewsnetwork.org

Insurers Can Cause Pain Too

By Victoria Reed, PNN Columnist

Having chronic pain or illness means that you likely take multiple medications and go to the doctor often. That means dealing with your insurance carrier to get claims filed and paid.

One of the medications that I use for my rheumatoid arthritis is quite expensive. In fact, many of the biologics commonly prescribed for RA and other autoimmune conditions are very pricey, costing thousands of dollars a month depending on insurance. Before starting a biologic, it usually needs to be pre-approved by your insurance company.

This pre-approval process can delay or even stall treatment altogether.  With RA, insurers usually require that you to try a particular biologic or disease modifying anti-rheumatic drug (DMARD) before you are approved for a more expensive one. This red tape can and does cause harm to patients as they wait for the insurance review, which can take up to three or four weeks.

During that time, doctors can treat patients with steroids or pain medications, which can help keep symptoms at bay. However, the biologics are primarily what keeps the disease from causing destructive and permanent damage.

Insurance companies are businesses, like any other, and their goal is to make money. But as they look for cheaper medication options and create red tape, the delay can literally leave you in more pain while you wait for a decision. Unfortunately, insurers control the purse strings and sometimes they seem to have more say in a patient’s care than doctors themselves.

Recently, I tried to complete a refill of my biologic medication, Actemra, through the specialty pharmacy that I use. I ordered it online and waited for the email confirmation of shipping, but after a few days I noticed that it didn’t arrive. I contacted the pharmacy’s customer service department to inquire about its status and was told that the required pre-approval had not been done by my doctor’s office: No medication would be shipped until that paperwork was completed.

I then contacted my doctor’s office to advise them of the delay and requested that they complete the required paperwork. Then I patiently waited. After nearly two weeks of being without my medication, the shipment finally arrived. Two weeks can seem like a lifetime if you’re in severe pain!

This pre-approval requirement makes no sense to me, as I’ve been taking Actemra for many years. RA is a lifelong condition that does not go away or get better on its own. Medications to control the condition are usually taken for the duration of your life. So why would my doctor need to submit pre-approval paperwork every six months?                   

Money! It’s as simple as that. Insurers look for ways to delay or avoid paying for an expensive medication..  

I’m sure I’m not the only one experiencing this. Cancer patients also must deal with their insurance company’s control over what drugs they can take to save their lives or improve their quality of life. My father lived with cancer for many years before he passed. Even towards the end of his life, the issue of what meds he was allowed to have was front and center, controlled and dictated by his insurer.

Patients can die because an insurance company refused to pay for a drug that they deemed too expensive. They prioritize profit over people’s lives and have far too much control over patient care.

If you find yourself in a battle with your insurance company over a medication that your doctor prescribed, you do have some options.  You don’t have to just accept a denial. Most insurers allow you to appeal an adverse decision, and sometimes they will change their minds after an appeal or receipt of additional supporting documentation.

You can also request that your doctor send a letter of medical necessity, which would document your need for the drug. In addition, you can request that the insurer do a physician level peer-to-peer review. This is a review that is used by insurance professionals to determine whether to uphold the denial of coverage for a particular medication or claim.

Sometimes utilizing these additional avenues will result in your medication being allowed. Still, any delay in treatment could be detrimental to your health or cause you additional pain while you wait through the appeal process. Some people may find it easier to just take a cheaper drug recommended by the insurer.

Chronic pain sufferers have enough to deal with on a daily basis and we don’t need the additional stress of engaging in a battle with our insurance carriers. Nor do we need unnecessary red tape delays, which are solely designed to save the insurer money.

Patients may not have the energy, time or knowledge to navigate the tricky tactics insurers use to pad their bottom line – which is where a patient advocate could help. Advocates can negotiate with the insurer on your behalf, and can also help you communicate with your medical providers and set up appointments. They can be close friends, family members, spouses or even someone from an organization, such as the Patient Advocate Foundation.

They say it takes a village to raise a child. We also need a village of resources to deal with chronic illness and all of the hassles that come with it.

Victoria Reed lives in northeast Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

12 Holiday Gifts for Caregivers and the People They Care For

By Pat Anson, PNN Editor

How do you take care of yourself when you feel overwhelmed taking care of someone with a disabling chronic illness? Can an anti-inflammatory diet help prevent migraines? What is “ableism” and how does it harm the disabled? Will they ever find a cure for long covid?

The answers to these and other questions can be found in our annual holiday gift guide. If you’re a healthcare provider, caregiver or you live with chronic pain and illness -- here are 12 books that would make great gifts over the holidays. Or you can always “gift” one to yourself.

Click on the book’s cover to see price and ordering information. PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon.

The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers

This timely book by Ryan Prior looks at how the Covid-19 pandemic left millions of people around the world with chronic fatigue, pain and other disabling symptoms. Many of these “long haulers” are now fighting for recognition and treatments for a puzzling new disease that could be challenging the healthcare system for decades to come.

Self-Care for Caregivers

In this handbook for caregivers, Susan White offers tips on how to maintain good physical and mental health, and how to avoid feeling angry, lonely and frustrated. Regular self-care is vital for caregivers, and means finding time to relax, rejuvenate and reconnect with others.

I’m Fine: A Practical Guide to Life with Chronic Pain

After a series of failed spinal fusions, author Toni Woodard has lived with chronic back pain for over 25 years. In this book, she describes how physical and emotional pain can impact work, relationships and mental health, and shares some simple practical lessons on how to manage pain and still enjoy life.

Raising Lazarus

The sequel to Dopesick, Beth Macy’s latest book takes a more nuanced approach to the opioid crisis, briefly acknowledging that many pain patients were harmed by the backlash against opioid medication. But Raising Lazarus primarily deals with Purdue Pharma’s corporate greed and the ongoing struggles of working-class people in Appalachia to overcome addiction and a healthcare system that doesn’t work for them.

The Migraine Relief Plan Cookbook

Author Stephanie Weaver spent years researching and interviewing migraine sufferers and healthcare providers about ways to relieve migraine pain through good nutrition. The result is this cookbook, filled with over 100 anti-inflammatory recipes for meals, snacks and drinks — all designed to help manage migraines, headaches and chronic pain.

Clinical Diagnosis and Treatment of Adhesive Arachnoiditis

It’s fair to say most doctors don’t know what adhesive arachnoiditis (AA) is, much less how treat it, which is why Dr. Forest Tennant wrote this handbook about the chronic and debilitating inflammatory disease of spinal nerves. The book will help clinicians understand the various causes of AA; how to diagnose it through lab tests, MRIs and patient symptoms; and how to treat AA through hormone therapy, good nutrition and medication.

The Nurse Practitioners’ Guide to Autoimmune Medicine

Dr. David Bilstrom wrote this book primarily to help healthcare providers diagnose and treat autoimmune disease — but patients will find it easy to understand. Chapters explore symptoms and diagnostic testing, as well as the stress, toxins, and hormone and vitamin deficiencies that cause autoimmune problems. Bilstrom takes a holistic approach to treatment, emphasizing diet and lifestyle changes over antibiotics and medication.

Wildest Hunger

The fourth in a series of paranormal crime novels by Laura Laasko, who lives with Ehlers-Danlos and Chronic Fatigue Syndrome. Laasko believes chronic illness is poorly represented in fiction, so many of her characters are given invisible illnesses like EDS to help educate readers about what it’s like to have a disability and manage its symptoms.

Year of the Tiger: An Activist’s Life

A collection of essays on living with disability by Alice Wong, founder and director of the Disability Visibility Project. Wong is a fierce critic of “ableism” — systemic discrimination and prejudice against disabled people, who are often defined and devalued by society for what they can’t do, as opposed to what they can.

Tao Calligraphy: To Heal and Rejuvenate Your Back

Dr. Master Zhi Gang Sha introduces readers to the ancient Chinese healing art of calligraphy, which professes to transform health, relationships and all aspects of life through positive energy and spirituality. This book focuses on healing back pain — and comes with QR codes that readers can scan to access videos that will help them rejuvenate their backs. Some reviewers claim just putting the book on their backs gave them pain relief!

The Hard Sell: Crime and Punishment at an Opioid Startup

Journalist Evan Hughes lays bare the inside story of Insys Therapeutics, a pharmaceutical startup that deceived insurers, corrupted doctors, and used brazen sales tactics to market Subsys, a potent and expensive fentanyl spray. The scheme made a fortune for Insys until federal investigators began looking into hundreds of overdose deaths and prosecuted company executives for drug trafficking.

The Song of Our Scars: The Untold Story of Pain

Chronic pain was a “distant, hazy concept” for Dr. Haider Warraich until he began experiencing it himself after a severe back injury. In this book, he explores the cultural and medical history of pain from ancient Greece through modern times — concluding that today’s healthcare system is broken and leaves many patients with chronic pain worse off than they were before.

These and other books and videos about living with chronic pain and illness can be found in PNN’s Suggested Reading section.

Why Words Can Hurt

By Mia Maysack, PNN Columnist

When my pain journey began over two decades ago, I didn’t have a “survival technique” or “coping mechanism.”  It was the ideology behind "positivity " that aligned most with me.

Any fixation on my ailments would have surely led to my death. In fact, it almost did, because anyone would start to lose it after experiencing what I and many others have: a lifelong, incurable, untreatable and unending physical discomfort.

Given the negativity that surrounds such an existence, my mission in life became to seek out the silver lining of things. I remind myself that life is a fragile gift, which helps to center and ground me. A slogan I've lived by is: I'd rather be alive and hurting than 6 feet under and feeling nothing.

But as the years passed and medical complications intensified, making the choice to strive toward an attitude of empowerment became not quite as achievable or potent as it had been. I found myself struggling in ways I wasn't sure how to manage. A life I'd rebuilt from scratch began slipping away into chronic oblivion -- yet again.

The distress reluctantly led me back into a clinical setting, where a healthcare professional shook me to my core by declaring: “You claim to be positive, but you're not. You aren’t living that." 

I was stunned! This person did not really know me. I felt overwhelmed at their audacity to make such an outrageous accusation! 

"I’m one of the most positive people I know," I told him. 

"It's not a decision you've made," was his reply.   

I left so perturbed. How dare they?

This individual knew nothing about how my body typically feels, the strength it takes to greet a new day, or to spend and wager absolutely every energy penny I possess just to make it through.

I sat with this experience for a long time, until a light bulb went on and I was faced with the realization: the provider was right!

As my disorders evolve or shift, different approaches and modalities are going to be required. This includes our attitude and mindset. Until then, I wasn’t fully embracing a more uplifting way to live. The pursuit of wellness had been solely residing inside my head, as opposed to being a place where I operated from. Positivity is a lifestyle that needs to be practiced.  

It wasn't possible for me to move forward while also clinging so tightly to my past. I have been shaped by those experiences and wouldn't be who I am without them, but they are not an adequate reflection or accurate depiction of my identity.

For example, a loved one recently shared their disinterest in associating themselves with the word “trauma.” This is somebody whose life has consisted of experiences most would consider to be the worst trauma, but they’ve chosen not to embrace that terminology. Someone else I care about refuses to identify with the word “victim.”

Personally, I attempt to steer clear of words such as “suffering” or being a “patient.” I also refrain from describing something as “negative” or “positive.” That labeling limits my overall perception and eliminates the ability to accept something as it is happening. 

The more I’m preoccupied with judgment or labeling, the less space there is for compassion and curiosity to exist. Of course, there’s nothing wrong in identifying with these phrases -- I certainly have. We’re also trying to gain acceptance from the general public, and relating to our “suffering” and “trauma” makes it more understandable. 

But the power of words and the way we refer to ourselves, interact with one another, and tell our stories, does matter. We need to use the words selectively, without letting ourselves be defined by them.       

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She 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. Mia is the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.

Are Chronic Pain Patients Being Tortured?

By Carol Levy, PNN Columnist

“This is how you do torture. Just reduce their tolerance level so low, all you have to do is touch them.”

That’s what an ophthalmologist said to a medical resident as he examined my eye, triggering my trigeminal neuralgia pain.

“They burned my fingers. All they wanted was information. I would have told them anything just to stop the pain.” That’s from an episode of Law & Order.

I haven't tested my theory, but I imagine if you asked a healthy person if chronic pain was akin to torture, the answer would be a resounding, “No. Of course not.”

Torture is defined by Merriam Webster this way: 

“The infliction of intense pain (as from burning, crushing, or wounding) to punish, coerce, or afford sadistic pleasure. Something that causes agony or pain; anguish of body or mind.”

Definitionally, chronic pain patients are not being tortured, because the pain is not being inflicted as punishment, coercion or sadistically. On the other hand, we are definitely being tortured because pain does indeed cause us agony and anguish.

The injunction against torture is spelled out in the Geneva Convention and other international laws when engaging in war, but not when the war is within our own bodies.

The U.S. Congress has twice tried to deal with pain. In 2000, the Pain Relief Promotion Act was introduced. The naming of the bill sounds good, but some of its provisions are Orwellian. It called for a criminal penalties against physicians of up to 20 years in jail and revocation of their DEA license if they knowingly prescribed a controlled substance used in assisted suicide. Some physicians were concerned the bill could lead to charges if they prescribed opioids to patients who overdosed, intentionally or not.

In 2005, the Conquering Pain Act was introduced. It called for federal health officials to develop an “evidence-based practice guidelines for pain treatment” to address “the public health crisis of pain.” 

Neither Act was approved. But many of the things they called for have come to pass.  

Many have posited that under the 1990 Americans with Disabilities Act (ADA), pain patients have a right to opioids and other treatments. That unfortunately is not the case. Under the ADA, disabled people who are prescribed opioids cannot be discriminated against in employment and access to public facilities. However, the ADA does not address the prescribing decisions of doctors.

More recently, the U.S. Supreme Court ruled 9–0 in favor of two doctors who were convicted of acting as drug dealers by “overprescribing” opioids. The decision gives physicians charged with illegally prescribing opioids a fighting chance in court, because it requires prosecutors to prove that they had criminal intent. 

Where does this leave us? Will it change the legal landscape for doctors and patients? Will physicians who prescribe opioids based on their patients’ symptoms, diagnoses and suffering be less fearful? That is yet to be seen. 

Change takes time and one court ruling does not seem like much. But maybe we can look at it as a sliver of light, an opening that we can use to shine a brighter light onto us and our needs. 

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.

A Weird Trick to Get Doctors to Listen to You

By Crystal Lindell, PNN Columnist

There’s a lot of advice out there on how to get a doctor to take you seriously. Most of it is wrong.

Lucky for you, I’ve been in pain for a decade! Through trial and lots of errors, I’ve learned a few things and I’m happy to share them with you.  

First though, a little background on why you might need this information. It’s basically a rite of passage for chronically ill patients to lose their faith in doctors. We go in expecting Dr. Gregory House – the brilliant and grumpy lead character on the TV show House -- to solve the puzzle of our illness. Instead, we’re more likely to be met by a doctor with all of House’s hostility, but none of his determination.  

Doctors are notorious for downplaying symptoms, ignoring concerns, and blaming everything on the patient’s weight/smoking habit/stress/drug-seeking behavior.

They also tend to have a violent aversion to patients who suggest their own diagnoses. Their delicate doctor egos override any rational reaction and, more often than not, patients with chronic illness leave their appointments with no answers.

I used to think this only happened to women, but after attending multiple appointments with men in my family, I have come to realize that it’s just an across-the-board thing. My theory is that many of them became doctors so they can be seen as the smartest person in the room. And they hate it when patients treat them as equals, instead of the superior beings they believe themselves to be.

The problem is, a lot of patients tend to be really good at figuring out what’s wrong with their own bodies. They’re highly motivated to find answers, and they have more access to medical research tools then ever before in human history. Doctors love to mock Dr. Google, but that’s kind of like mocking libraries. Finding information online doesn’t automatically make it less valuable than finding it in a book.

Which brings us to the problem: Once we, as patients, figure out what might be wrong, how do we bring it up to our doctor without offending them?  

In short, it’s all about framing. You need to suggest that someone else is making you ask them about whatever it is you want to bring up. Let me share an example:

Do NOT say: “I think I have Ehlers-Danlos Syndrome.”

Instead, say: “My best friend wanted me to ask you about something. I don’t even think it’s a thing, but she thinks I might have something called EDS. Ehlers-Danlos syndrome, I think? I don’t know. It’s probably rare. But have you heard of it? Do you think I might have it?”

Here’s another example:

Do NOT say: “I think I have ADHD.”

Instead, say: “So my wife said I had to ask you about something. I don’t know if she’s right, but if I don’t bring it up with you, she’ll be really mad at me. She thinks I might have something called attention deficit disorder. And she said you might be able to help.”

Yes, I know, it’s annoying and demeaning. And you’re right, patients shouldn’t have to navigate medical conversations like this. They shouldn’t need to fake ignorance to get a doctor to help them.

But this column isn’t about overturning medical power structures. It’s about getting immediate results in what are often life-threatening situations. And I can assure you, this method works. I speak from experience. It is literally how I got my EDS diagnosis after dealing with chronic pain for years. I have shared this tip with others who have also used it successfully.

It works on every type of doctor, too. This is what you say to them:

To ER doctors: “My husband made me come here to get this chest pain checked out.”

To primary care physicians: “My roommate said I had to ask you about having my thyroid levels checked.”

To pain specialists: “My brother thinks I have rheumatoid arthritis and he wanted me to ask you about it.”

To psychiatrists: “My aunt said I should ask you about anxiety medications.”

This will not only help in getting them to take your symptoms seriously, it will also work on convincing them to order specific tests, offer specific medications, and consider a specific diagnosis.

This approach shifts the focus onto a third party, which helps doctors lower their defenses. If they think medical suggestions from patients are inane, you’re just feigning agreement with them. It effectively puts you on the same side as the doctor ⁠— the two of you against your loved one. Which is fine, because your loved one isn’t relying on them for medical care, so they can take the heat. And when the doctor feels like they’re on your side, they’re more likely to want to help.

This approach also means that the doctor knows you are likely to tell a third party what transpired during the appointment, which means they’ll be held to a higher level of accountability. That alone will often have a big impact on how they treat you.

Yes, it is wrong that patients have to use passive aggressive techniques just to get an MRI. But, as my mom always says, it’s better to be wrong than to be dead right. Sure you could insist on being more direct with your doctor, but if that doesn’t work — and the doctor dismisses your symptoms when they should be treating them — the choice could literally leave you dead. You’d be right, but you’d be dead right.

Hopefully, one day, patients won’t have to navigate their doctor’s fragile egos to get the care that they need. Until that day though, this will help. So go forth and be well. And if you can’t be well, at least be well prepared.

Crystal Lindell is a freelance writer who lives in Illinois. After five years of unexplained rib pain, Crystal was finally diagnosed with hypermobile Ehlers-Danlos syndrome. She and her fiancé have 3 cats: Princess Dee, Basil, and Goose. She enjoys the Marvel Cinematic Universe, Taylor Swift Easter eggs, and playing the daily word game Semantle. 

Deaths of Intractable Pain Patients Often Mistaken as Overdoses

By Dr. Forest Tennant, PNN Columnist

Unexpected and sudden death commonly occur in persons who have poorly controlled pain caused by Intractable Pain Syndrome (IPS). Many persons with IPS who have died unexpectedly have been falsely accused of an “overdose” because drugs were found in their body fluids at autopsy. In reality, the cause was almost always cardiac arrest, hypoglycemia or adrenal failure.

Cardiac Arrest

Pain flares during cardiac arrest may cause the adrenal glands to pump out so much adrenalin that their blood pressure and pulse rate jump up dramatically. This causes blood vessels, including the coronary arteries and those in the brain, to constrict and shut off blood flow. The result may be a heart attack, stroke or arrhythmia.

Chronic, recurrent coronary constriction may cause heart pain called “angina.” A person with IPS who has their medications, usually opioids or benzodiazepines, reduced too rapidly is very prone to cardiac arrhythmia and cardiac arrest.

Hypoglycemia

Insulin is normally made and secreted by the pancreas to lower blood sugar in order to digest food and stabilize metabolism. In times of pain, cortisol and blood sugar are raised. When this occurs, insulin is pumped out by the pancreas to heal injured or damaged tissues. Too much insulin caused by a pain flare can force blood sugar to drop to such a low level – a condition known as hypoglycemia -- that death may occur.

The long-term effect of constant pain on the pancreas is an insulin deficiency, so high blood sugar levels (diabetes) are regularly found in persons with IPS.

Adrenal Failure

Uncontrolled constant pain may exhaust the adrenal glands to a point that the hormone cortisol drops too low, causing Addison’s disease or adrenal insufficiency. Symptoms such as darkened skin, abdominal pain and weakness usually appear slowly, but if there’s rapid onset of symptoms it could lead to adrenal failure and death.

Addison’s Disease is named after Dr. Thomas Addison, who described 11 cases of adrenal failure in 1855. About half his cases had histories of severe pain. Persons who die of adrenal failure often do so in their sleep.

Many persons with IPS have unexpectedly and suddenly died and have been falsely accused of drug overdose. To prevent sudden death, persons with IPS must be in a pain treatment program that is balanced and doesn’t rely just on just one or two medications.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from a bulletin recently issued by the Intractable Pain Syndrome Research and Education Project.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.   

Thinking Outside the Pill Box: Another Approach to Pain Management

By Alon Ironi, CEO, Theranica Bio-Electronics

Well into my adulthood, I struggled with chronic back pain. I took medication after medication, finding myself getting sucked into the habit of popping painkillers and wondering why my pain wasn’t healing. I eventually discovered the psychological and mental elements inherent in chronic pain, and shifted my approach to pain management, which rapidly cured my back pain.  

The holistic approach to healing pain has historically been ridiculed in the medical community, preventing many physicians from recognizing the legitimacy of alternative treatments. The time has come to evolve beyond just popping pills to treat pain, towards a biopsychosocial perspective.  

The discovery and introduction of penicillin in 1928, marked the very beginning of medication popularization in the West. The development of new medications – for a wide range of uses - has extended life span and improved quality of life.  Unfortunately, the benefits associated with medication have encouraged its frequent use for disorders it simply is not meant for, such as certain types of chronic pain.  

Medication overuse headache is one example where drugs intended to treat migraine and headache can, with excessive use, lead to the deterioration of the exact condition they are supposed to be treating. Medication is an incredible tool when used properly, but it’s not the only tool, and it can be seriously harmful when misapplied.

What is Pain and How Do We Treat It? 

Pain is a unique bodily experience that, unlike other disorders, indicates an underlying issue in one’s physiology. Pain is an alarm system. It tells us that something is wrong, and if we mask it without treating its underlying cause, we might cause a great disservice to our bodies.  

The use of medication to treat short-term acute pain, while a person simultaneously heals from the cause of that pain, like a pulled muscle or a tear in a tissue, makes sense. However, the use of medication in instances of chronic pain - pain that persists longer than three months - is problematic.  

Chronic pain is a debilitating condition that impacts an individual’s everyday life. From migraine to chronic knee pain to chronic back pain, the routine of normal life is disrupted. Often, this chronic pain had an initial cause, such as a surgery, fall or injury that has since healed, but the pain persists long after its source has disappeared. This type of pain, as Haider Warraich, a physician and clinical researcher at Harvard, so aptly puts it, is like “an overlearned traumatic memory that keeps ricocheting around in our brains, often long after the injury it rehearses has fully healed.” 

This perception of chronic pain has its roots in quite a controversial physician -the late Jon Sarno, MD, a professor of rehabilitation medicine in the 1980’s and 90’s. His theories, while not rigorously proven in formal clinical studies, were built upon anecdotal data from thousands of patients he treated during his lifetime and are still being explored today. They have jumpstarted a revolution in our understanding of pain.  

The biopsychosocial model focuses on illness as a complex interaction of chemical and electrical reactions that are induced by biological, psychological and social factors. Contemporary pain researchers, like Lorimer Mosely, a clinical scientist, have applied this model to pain, recognizing that pain is comprised of both physical sensation and emotional stimulus, such as the fear of pain itself.  

Pain is no longer perceived as entirely “physical” in nature. It is now understood to be exacerbated by the fear of tissue damage and the aversion to previously experienced pain. As clinical research develops and shifts its focus to a more biopsychosocial approach to illness and pain, doctors must re-evaluate their first-line treatment suggestions. 

Drug-Free Pain Management 

Based on this new perception of pain, several nonpharmacological treatment methods for pain management have been developed. One approach is a purely psychological treatment called cognitive behavioral therapy, a form of talk therapy that discourages negative thoughts associated with pain and trains people to adhere to thoughts that stimulate the body’s natural pain relief system. Another example of nonpharmacological pain treatment is massage therapy,  which addresses pain by releasing muscle tension.  

Neuromodulation is highly effective in treating certain pain disorders through the use of electrical stimulation to modulate pain pathways in the neural system.  Several forms of neuromodulation treatment exist today, with different mechanisms of action and efficacy.  

Spinal cord stimulation, for example, is used to treat back pain and leg pain. But it is highly invasive, with electrodes surgically placed near the spinal cord to send electrical currents to the spine.

Deep brain stimulation is being studied for the relief of chronic pain, but it is also quite invasive, as it involves implanting electrodes into the brain.  

Nerivio is a non-invasive, wearable neuromodulation device made by my company that is FDA-approved for the treatment of acute migraine. Nerivio is self-applied to the upper arm, where it uses remote electrical neuromodulation (REN) to stimulate analgesic neurotransmitters in the pain pathways of migraine. In clinical trials, Nerivio and other REN devices have been shown to be just as effective as pharmacological treatments.  

To be clear, medication is a necessary and beneficial tool for treating infections, reducing fever, managing sickness and much more. However, its use in chronic pain management is sometimes misplaced, especially at a time when newer non-drug therapies are emerging.  

The holistic approach to pain management is the future. It considers the balance and context of a patient’s life and combines multiple modalities for their treatment. People are multifaceted and their treatment should be multifaceted as well. It is my hope and vision that this field of research will continue to develop and will soon be widely embraced by most medical professionals.  

Having experienced the benefits of drug-free pain management first-hand, I truly hope that health care systems will support patients in accessing these much-needed alternative treatments to improve quality of care and life.  

Alon Ironi is the CEO and co-founder of Theranica Bio-Electronics, the developer of Nerivio.

Alon received a Master of Science in Electrical Engineering from Santa Clara University, and a Bachelor’s of Science in Electrical Engineering from the Technion- Israel Institute of Technology.

The One Unacceptable Thing a Person in Pain Can Do

By Mia Maysack, PNN Columnist 

Someone once asked me, "If there were one thing to educate the public about on how people in pain live, what would it be?"  

My first thought was, “Where should I start?" 

By definition, chronic pain is pain that persists for at least three months despite medication or treatment. The pain may be caused by any number of medical conditions, diseases, trauma or injury.

Some of us live with chronic pain that most “healthy” people can’t begin to relate to. It’s not like your last stomach flu, hangover, stubbed toe or whack on your not-so-funny bone. You’ll quickly get over those.

Consider the possibility of having pain that never ends. You try countless therapies, medications and changes in lifestyle that may help for a short time, but are far from a cure-all. Many of the suggestions you get -- whether asked for or not -- also haven't proven viable.   

Although I'm fortunate to be alive, migraines and cluster headaches caused by a traumatic brain injury have been my daily companions for over two decades. There’s not much I can do to ease my head pain, and I went through many years experimenting with treatments that only made things worse.      

Some scary statistical facts about pain:

• About 20% of American adults – 50.2 million people – have chronic pain, 19.6 million of which have “high-impact” pain that limits their life and work activities 

• Chronic pain raises the risk of many other health problems, including dementia, high blood pressure, insomnia, anxiety and depression

• The average veterinary student in the United States get five times more education hours focused on treating pain in animals than a medical student does in treating humans

• Even though chronic pain is the number one reason for accessing healthcare and the leading cause of disability, only two percent of the National Institute of Health’s budget goes to pain research  

Let's go back to the thought of a sprained ankle, toothache, seasonal cold or a mild burn. Imagine coming across something that actually helped ease that hardship, but having it taken from away suddenly, and then being refused or abandoned as a patient. That’s what many of us with pain have experienced.

In the face of all this, there does come a point when it's our responsibility to raise awareness about pain and to help find solutions that we all desperately want. This requires some effort on our end.  And it's disheartening to encounter people who won't lift a finger to work towards a solution to our own causes. 

Recently I was discussing important legislation with other individuals living with pain, who all said they were personally impacted by the issue. When I proceeded to explain the next steps needed regarding policy, I saw their eyes glaze over. One even whipped out their phone in disinterest, while everyone else seemingly groaned in discontent.  Even in our own community, we don’t always show up for the sake of ourselves or each other.

It goes without saying that not everyone is interested in or even able to travel to Washington DC for a congressional meeting. The same is true for attending rallies, running support groups, or just sharing their story on a public forum. But someone has to. There are things we can do that will help us inch closer toward change and relief for millions. 

Our individual experiences are valuable and whether you live in a state of physical hurt or not, we must begin to care more about one another on a fundamental level.  Pain is ultimately something that'll impact everyone. Why wait for pain to happen to you? Why accept the fact that it already has?  

One of the biggest myths is that there's only certain acceptable ways to advocate for ourselves or each other. In actuality, there's only one unacceptable thing to do. And that is nothing. 

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She 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. Mia is the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.

Fibromyalgia: Often Ignored and Poorly Treated

By Victoria Reed, PNN Columnist

Up until about 10 years ago, I had never heard of fibromyalgia. But during a routine medical visit, my doctor recognized symptoms that I described as possibly being signs of fibromyalgia. After an in-depth exam and other testing, a diagnosis of fibromyalgia was made.

Fibromyalgia is a complex disorder which causes widespread musculoskeletal pain, fatigue, sleep and memory issues. Symptoms can begin after a traumatic injury, surgery or infection. It sometimes takes many years to receive a diagnosis, and there is currently no cure.

People like me with autoimmune disorders, such as rheumatoid arthritis or lupus, often suffer from fibromyalgia. It is more common in women than men. The disorder can be accompanied by headaches, irritable bowel syndrome, anxiety and depression. Many fibromyalgia patients also complain of “fibro fog,” which impairs the ability to focus, pay attention and concentrate on mental tasks.

Fibromyalgia seems to run in families. I have multiple family members with the condition, spanning at least three generations. My mother had symptoms of fibromyalgia, but unfortunately never received a diagnosis.

Many experts agree that the key mechanism behind fibromyalgia is central sensitization, which causes the brain and spinal cord to become hypersensitive to pain signals. Pain will be amplified and linger well beyond the initial injury. The hypersensitivity can also affect other senses, leading to discomfort with strong scents or chemicals, bright lights and sounds. Being in loud, crowded spaces can create an overwhelming experience for fibromyalgia sufferers. 

Unfortunately, fibromyalgia is still a somewhat controversial diagnosis, because it is not yet fully understood and its symptoms can overlap with many other conditions. Some people even say that it’s a “garbage can” diagnosis that’s only given when no other one can be made. Many old school doctors believe that fibromyalgia is not a real condition, which is why it can often take years to receive a proper diagnosis.

However, recent research has discovered that there are differences in the brains of fibromyalgia patients. One important discovery is that of neuro-inflammation, which, simply put, is inflammation in certain regions of the brain. This research, documented by PET scans, does confirm inflammatory mechanisms in the brains of fibromyalgia patients and is a major step forward in trying to understand and treat it. It also helps to validate the existence of the condition itself.  

People with fibromyalgia are sometimes not taken seriously by their own doctors and denied appropriate pain management. Many are also denied disability payments as well. I know from experience that the condition can be terribly painful, with deep muscle aches and sore tender spots all over the body.

I have not had success with any of the traditionally prescribed drugs, such as Lyrica (pregabalin), an anticonvulsant that’s also used to treat nerve pain and seizures. While I’ve had some success with a high-quality CBD oil and various CBD creams, it is my prescribed pain medication, in combination with acetaminophen, that gives me the most pain relief.

Unfortunately, some fibromyalgia patients encounter roadblocks in finding a physician who is willing to prescribe pain medication if the only condition they have is fibromyalgia. This definitely needs to change! Fibromyalgia patients are worthy of treatment whether they have other pain conditions or not. The current anti-opioid climate continues to cause patients to suffer needlessly.

If you feel that you may be suffering from fibromyalgia, don’t be afraid to push, push and push for a diagnosis! If your doctor is not willing to help you, look for another doctor and don’t stop until you find one that takes your symptoms seriously. Research all you can on the condition and learn what you can do to help yourself.

Even though it might be difficult to exercise due to the fatigue that fibromyalgia causes, start by adding a little walking to your daily routine, even if it’s just 5 or 10 minutes. Exercise is good for your overall health and well-being, and it can help improve your mood. Being completely sedentary will only make things worse.

Regular massage is sometimes prescribed as well. If you can’t afford a professional massage, you can get a prescription for a therapeutic/medical massage, which will be a little cheaper. You can also purchase one of those self-massage sticks that can be found at sporting goods stores. I have found these things to be helpful to manage my symptoms.

I also suggest joining an online support group. There are many, many people suffering from fibromyalgia, and in these groups you can connect with people around the world, make some new friends, and learn about treatments that work for others.

Living with fibromyalgia is not easy, but it doesn’t have to be a hopeless situation either. If more doctors would take the condition seriously, make a timely diagnosis and provide appropriate treatment, perhaps there would be less suffering for those of us with fibromyalgia.

Victoria Reed lives in northeast Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

A Voice They Don’t Want to Hear

By Carol Levy, PNN Columnist

“Nothing about us without us.”

I did not know this clarion call was initially a slogan of the disabled community, which wanted a seat at the table when policies were created affecting the disabled. It also pertains to the pain community and our place in the fight against the “war on opioids.”

I am a member of my county's opioid task force. I was invited by a commissioner, an anesthesiologist, who has chronic pain patients. The commission's goal is to find ways to prevent drug abuse, how to treat those who are addicted, and how to fight opioid addiction. 

We had our second meeting a few days ago. In this group, I have become the voice of the pain community, a voice they don't want to hear.

At the first meeting, after hearing about opioids from an emergency room doctor, an EMT, a sheriff, and a recovering addict MD, we broke into smaller groups of 5 or 6 people. I tried to make my voice heard.

“Please, when you speak of addiction starting with painkillers, it needs to be made clear that the people abusing opioids are not the same as those who get legitimate prescriptions for legitimate pain,” I said, adding that studies show we rarely get addicted.

But another woman had a louder voice. Her story was sad, an addicted son who died from an overdose. Every time I tried to speak, she spoke over me. As the meeting progressed, the rest of the group turned to her and very specifically away from me. I was ignored for the rest of the meeting.

At the end, when we were to present our feelings and thoughts about what was needed in the fight against addiction, my voice was absent. 

The second meeting was run the same way. When we broke into our groups, I immediately spoke up. Eyes turned towards me as if to listen, but as soon as I finished my few sentences they turned away. I tried a few times more, louder each time, but was still mostly ignored.  

At one point a woman who runs a recovery house spoke the sentence I abhor: "Many of the addicts start with painkillers...”  

I immediately responded: “There needs to be an asterisk anytime that sentence is spoken. Studies show chronic pain patients rarely get addicted.”  

“I was not referring to those who need them,” she replied. 

“Then you need to add that as a parenthetical, so we don't keep getting swept up as part of the culprits in the war,” I urged.   

She shook her head, said “yeah sure” and went back to "they start with painkillers,” completely ignoring what I had said. 

At the end of the meeting, when we were asked to put on a poster board what we felt needed to be addressed, the leader completely omitted any suggestion that it needs to be made clear the pain community is not part of the problem. 

When it was over, I sought out one of the organizers and told her, “I'm not sure there's a place for me, for the chronic pain community, at this table."

She said she would talk to the county commissioners who had formed the task force and get back to me. No one has. 

I don't know what else to do to get us included. “Nothing without us” in regards to the opioid task force seems to be “nothing about us.” And definitely without us.   

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.

Finding Peace While Fighting Cancer

By Cynthia Toussaint, PNN Columnist

It’s the damnedest thing. Despite this month being my 40-year anniversary with high impact pain, and while I battle an aggressive breast cancer recurrence, people tell me that I look healthy and happy.

Stranger still, I feel more grounded and centered than ever. In fact, I’m down-right peaceful. So much so, when I recently saw my osteopath, she said that I no longer needed her treatment because I was “in the flow.”  

After delving deep into this disconnect, I’ve unearthed the workings that have brought me to this sacred place. And now that I’m here, I plan to protect my peace.

To start, I’ve learned to neutralize platitudes and their associated shame. When people blow by the gravity of my cancer recurrence by assuring me that staying positive will save the day, I politely dismiss their cliché as unhealthy and unrealistic.

There’s no one alive who could face a second round of breast cancer without being mad as hell. That being said, I’ve given myself permission to move through the five stages of grieving – denial, anger, bargaining, depression and acceptance – which has allowed me to come to an authentic level of positivity… and peace.  

Also, I’ve taken control of my cancer care. This is a big deal. After listening to my oncologist’s by-the-book treatment plan, I shared that, while well-intended, I thought his recommendations would kill me.

Instead, he and I sought guidance from trusted sources, and agreed on a plan that was tailored to my individual needs, including the complications that Complex Regional Pain Syndrome present. I won’t lie to you, the treatment is at times brutal. But I’m choosing it, and with control comes peace. 

And there was a miracle.

With the synergy of my current treatment (low dose chemo, immunotherapy infusions and a robust dose of self-care), my tumor quickly dissolved from the size of a ping pong ball to one that can’t be found. Wearing a Cheshire cat grin, my oncologist recently shared that in his 45-year career he’s never seen such a response.

So how did my body do that? Yes, the med cocktail certainly played its part, but I’m convinced that finding peace is my secret sauce to healing.

Besides taking control of my medical care, I’ve become religious about upping my terrain-game for the healthiest body and mind. I’ve switched to a vegan diet with lots of fish, committed to an hour-long workout each morning, get in bed early to promote deep sleep, and have radically reduced my stress by identifying and removing toxic people from my life. These are the self-care strategies we hear of time and again, and for good reason. When practiced, they work! 

Letting Go of Trauma

For more peace, I’ve vastly upped my game by adding a “paths-less-taken” approach.

Like most of us with pain, I suffered much childhood trauma, the foundation of my un-wellness. I’m working diligently on trauma release using various methods, one being forgiveness. Through daily visualization and meditation, I’m practicing the art of letting go of trespasses.

Instead of allowing anger and hurt to turn into psychic stagnation, I acknowledge the negative emotion, thank it for lessons learned, and send it on its way. Forgiveness is a choice, and I’ve decided to free myself from poisonous energy so I can move forward with peace.

I often remind myself that when a person is cruel, it’s not about me, but rather a challenge they’re experiencing on their life path. And when I can, though still a work-in-progress, I light a candle and wish them well.

Most surprising, I recently stumbled upon my biggest trauma-releasing, peace-inducing tool, as I intuitively knew this blast-from-the-past would move my wellness ahead by eons.

Several months ago, I surprised myself by bringing my grandmother, who passed long ago, into my visualizations. Soon other long-gone relatives arrived. Of particular interest was my Aunt Grace, who continues to lead my healing rituals. Grace died a couple decades before I was born, but I’ve always felt a bond so close, I’ve dedicated my life work to her. She is my guide and my angel.

I now understand that our connection comes from sharing similar traumas. We were both the “fixers” of impossibly broken families and both got profoundly ill at 21. Tragically, Grace died from leukemia. Mine was a different death when CRPS ravaged my body.

Through arduous work and by facing hard truths, I now see that, like Grace, most of my ancestors suffered profound trauma, and by sharing their genes, I’ve inherited the injury that binds me to disease. Science calls this epigenetics.

By healing the wounds of my ancestors through rituals, I’m healing myself. Additionally, I’m breaking cyclical familial patterns by not passing along the burden of traumatic energy to those I engage with.

These seemingly “woo woo” rituals appeared novel – hell, I thought I’d invented a breakthrough therapy! That was until I described them to an integrative trauma expert who shared that “Ancestral Healing” is a real thing, scientifically proven and all.

Life is precious. So is our life preserving, life enhancing peace. Whether I’m on my way out now or have 30 more years of kick in me, I’m focusing on protecting this essential resource. 

I’m convinced that most of our pain, physical and emotional, springs from inner tumult driven by deep wounds, many of them handed down. Through intentional work and practice, we can quell that upset and find peace. Then the challenge is to hold our peace sacred, to protect it from internal and external “vampires” that aim to trip it up.

My mom turned 90 last month and is suffering from advanced Alzheimer’s, I believe brought on by trauma. That trauma has passed down to me, seeding a lifetime of illness.

I recently spent time with Mom at her new memory center, and later that day delighted in meeting my newest grand-niece named after this beautiful, generous and loving woman.

I hope that by healing the wounds our ancestors couldn’t, I’ll help this li’l darling have a pain-free, peace-filled life, one she can, in turn, hand down.            

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 19 co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Did Opioids Take Away Your Pain?

By Richard “Red” Lawhern, PhD

I write to and for pain patients in several medical journals and social media venues.  I’ve been doing this work for over 25 years. A few days ago, on one of those venues, I encountered the question asked in the headline: “Did opioids take away your pain?”

What follows is my answer.  

I come to this question from the perspective of a published healthcare writer and caregiver to a chronic neuropathic face pain patient. I weekly interact with thousands of patients in social media and via email distribution lists. Thus I “see” many types of pain and many lives impacted by pain.

Pain is the symptom that most often brings patients to a doctor's office. About 50 to 100 million U.S. citizens are affected by pain that significantly affects their quality of life and requires medical treatment.  In 2018, nearly one in five U.S. adults received a prescription for opioids. Prescription rates have dropped dramatically since then, potentially leaving millions of patients under-treated.

From deep study, I am convinced that opioid pain relievers are safe and effective for the great majority of people in whom they are medically managed by a trained and licensed clinician (doctor, physician assistant, nurse practitioner, etc.).

A small percentage of pain patients — estimated by some writers at 0.6% and others as high as 3% — are vulnerable to substance abuse and addiction. However, the numbers of medication abusers appear to be relatively constant, and are not affected by increased or decreased prescribing rates. This suggests that genetic factors might be involved in addiction, but medical literature isn’t conclusive on this issue. Other “causes” of addiction clearly contribute, such as social isolation, hopelessness, unemployment, and protracted untreated pain. 

Depression and anxiety almost certainly play significant roles in both addiction and suffering due to chronic pain. I see this demonstrated repeatedly in thousands of person-to-person contacts on social media.  I believe aggressive evaluation and treatment for depression is a necessary element for effective pain treatment.

Opioids are not needed by all pain patients. And some pain patients are either very slow or very fast metabolizers of opioids due to their genetics – causing a wide variation in the minimum effective dose between individuals.  Others may develop tolerance over time, requiring higher doses to obtain the same pain relief.

For patients managed over long periods on high doses, physical dependence (different from addiction), may develop and they may have withdrawal symptoms if they are tapered off treatment too rapidly. I see no consistent evidence for any effect that can be called “opioid induced hyperalgesia,” a theory that opioids can make pain worse.

Opioids create variable side effects — constipation, sleepiness, brain fog, nausea or low sexual libido.  These side effects can be managed in many people. And for patients who don’t find a balance, one opioid can be tapered down while a different opioid is titrated up. 

Unfortunately, many physicians seem to be unaware of the highly individual responses to these medications.  If a patient cannot tolerate one opioid and pain is severe enough to warrant using this class of medications, then other opioids can be tried.

There is no one-size-fits-all effective dose or safe dose in this class of medicines. I have talked with patients who get substantial pain reduction (rarely total pain relief) from minimal daily doses of 20 morphine milligram equivalent (MME). I’ve also talked with patients who benefited from a dose as high as 2,000 MME, while experiencing few side effects.  There is published literature in case reports pertaining to this widespread range of doses.

This background leads to a central observation:  the default procedure in long term treatment of pain is to first try non-opioids (primarily NSAIDS, sometimes anti-seizure meds for neuropathy); then to try relatively weak opioids like tramadol; and finally to try stronger opioids like hydrocodone or fentanyl patches. This procedure has been known for over 30 years as the World Health Organization’s “Pain Ladder.”

For all drug treatments, additional non-drug support therapy is appropriate.  By this, I mean patient and caregiver support groups, counseling, massage, physical therapy, acupuncture, cognitive behavioral therapy or interventional medicine. Given that such measures rarely improve pain more than marginally, they are not “preferable” to opioids. They can augment but not replace analgesic medication. 

For all opioid therapies, I believe the appropriate medical procedure is to taper up gradually from low doses, while observing and managing intended outcomes and unintended side effects, until a dose level is found that helps the patient manage their pain without creating dangerous side effects.  When this approach is used — even in patients who also deal with substance abuse issues — we see long-term improvements in patient quality of life. 

By contrast, it is now widely understood that forced tapering of patients to lower opioid doses or “cold turkey” withdrawal can be a direct cause of medical crises and sometimes patient suicide.  Patient desertion is never ethically or medically justifiable.

Used with appropriate oversight by a licensed physician, opioids are both safe and effective.  Addiction or substance abuse are rare in medically managed patients.  There is also no relationship between rates of prescribing versus hospital admissions or overdose related mortality. The continuing and widely shouted “association” between doctor-prescribed opioids and substance abuse is a false narrative that has enormously damaged patients and clinicians alike.

The original and draft revision of the 2016 CDC opioid guideline is fatally flawed by anti-opioid political agendas and outright fraudulent junk science. In my view, these guidelines must be publicly repudiated and withdrawn without replacement. All state guidelines referenced to the CDC must likewise be revised or withdrawn.

It is time to remove law enforcement from doctors’ offices, and return the practice of pain medicine to those with actual training and hands-on experience working with people in pain. 

Richard “Red” Lawhern, PhD, is a subject matter expert in public policy for regulation of prescription opioids and of clinicians who employ them on behalf of patients. Dr. Lawhern is a regular contributor to Pain News Network.

My Story: Hospitals Are Undertreating Pain

By Michael Swift, Guest Columnist

Right now, as I type this, I can barely finish because I just got home from a surgery in my abdominal area. I won't get into the details, but a lot of cutting was done, and I was discharged after an agonizing hospital stay. I was given Tylenol and Naproxen for post-surgical pain.

I am now reclined in bed at home and suffering from post-op pain because a major hospital in a city of a quarter million people is undertreating pain. This is the new norm for most hospitals here in Texas.

My wife and I lived in beautiful central Oregon all our lives. We ended up vacating the house we rented and could find no place to live in the entire state that was affordable to us. For family reasons, we moved to the Texas Panhandle.

My wife, seeking a new pain specialist in Amarillo, was denied and bawled-out two times by doctors. She was told by one verbatim: “We don't push dope here. If you want drugs, go to the north side of town."

I almost walked back in after she told me what this doctor had said to her, to punch him in the mouth. But it would do no good trying to help her from a jail cell. She was visibly upset, in tears, humiliated and so hurt. She is a 67-year-old senior with spinal stenosis and a bone disease that is destroying her vertebral column. Even with stellar remarks by her former providers as a "model patient with legitimate pain,” she was still an object for these millennial brats to verbally spit upon.

When living back in Oregon, my wife and I had a wonderful provider in Bend and our lives were fully active. We failed however to do our homework before moving to Texas. When we arrived, we realized that the Texas Medical Board and certain medical groups and doctors decided they wanted to solve the huge drug abuse problem.

The real problem here has been massive amounts of illicit fentanyl, comprising about 75% of overdose deaths, along with heroin, ecstasy and many other street drugs pushed in by the Sinaloa drug cartel. Nevertheless, the medical board went after the doctors and patients because it was easier than addressing the real problem.

A Broken Healthcare System

To say the least, I am saddened, upset and feeling a huge weight of condemnation from individuals here in the medical field. What a broken and detached healthcare system.

We are both leaving Texas for a nearby state, already set up with a new provider there, who is willing to take a good look at her without judgement. I am not leaving though, until I file a complaint against both pain management providers for their unethical, cruel treatment and libelous slander -- with the use of profanity to my wife's face -- all confirmed by the nurse in the exam room.

I will also file a complaint with the Texas Medical Board for the experience I had as a surgery patient. It will fall on deaf ears, but I won't stop until I get a response. To those of you out there who are also suffering and abandoned, take any and EVERY measure available to control your pain, which is robbing you of your life. You have no other choice.

There is a terrible and frightening experience awaiting those who are destined to go under the knife in hospitals that have overreacted to the "opioid crisis” by implementing a new policy of completely abstaining from administering any narcotic pain medication to post-surgical patients.

I suppose I could have screamed at the top of my lungs to demand pain relief, but who wants that on their record. Or worse, to be blacklisted. Thank God I have an alternate source of pain relief, but I am still astounded.

I am a veteran of nine prior surgeries, all of them done over 20 years ago. When I was in the hospital after those surgeries, I was asked by a nurse what narcotic I wanted to choose for pain relief. After that, I stayed healthy, avoided more surgeries and interpreted the many stories I heard about "Tylenol for post-op pain" as nothing but false tales and fear-mongering.

To all and any of you who posted such statements, I sincerely apologize. You were telling the truth.

Michael Swift lives with degenerative disc disease, arthritis and severe migraines.

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