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.

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

The Era of No Diagnosis

By Dr. Forest Tennant, PNN Columnist

Recently I was given a report written by a prestigious professional pain organization proposing that “back pain” should be the only diagnosis assigned to this condition.  They want to do away with any diagnosis like herniated disc, arachnoiditis, sprain, strain or rheumatoid spondylitis.  Their rationale was that pain treatment should be the same for every case of back pain, therefore there is no need to make a causative, underlying diagnosis for each patient. 

To me, their motivation was clear.  It takes training, time, expertise and money to make a correct medical diagnosis, and this group only wanted to treat the symptom of pain.  Or maybe they just want robots to take a pain complaint and exercise a preconceived, no-human touch medical protocol as treatment?

This non-diagnostic proposal goes along with the large number of papers that wish to declare pain a disease rather than a symptom.  Let us be abundantly clear:  Pain, as a symptom, can be part of a disease, syndrome, disorder or condition, but pain itself is not a disease.

Some diseases definitely cause pain. Good common sense medical practice has included, and should continue to include, a search for the basic cause of an individual’s pain. What’s more, the focus should be on treating the cause of pain rather than just treating the symptom of pain. Diagnosis is the process of identifying the cause of illness whether it be a disease, condition or injury.

My recent experience in studying adhesive arachnoiditis (AA) has revealed some pathetic information about the failure of some doctors to make a diagnosis.  In an effort to develop prevention measures and treatment protocols, we surveyed several dozen people who developed AA after an epidural corticosteroid injection or a spinal tap.  In these cases, the individual singularly blamed the development of AA on one of these procedures. 

The amazing statistic, however, is that barely a third of these individuals could give us the diagnosis that prompted a physician to do an epidural injection or spinal tap in the first place.  Spinal taps were usually done in an emergency room, and only about half of these patients could even remember the symptoms that caused the emergency visit.

One-Size-Fits-All Treatment

A great disconnect has developed between primary care physicians, pain clinics and patients.  In most cases today, a person with neck, back or extremity pain will initially consult with their primary care physician. In many cases, the doctor will then refer the patient to the local pain clinic, expecting the clinic to determine a specific causative diagnosis and develop a patient-specific treatment plan. 

That is what usually happens when a primary care doctor refers a patient to an allergist, rheumatologist or cardiologist. The medical specialist makes a diagnosis and develops a patient specific plan that either the specialist or the referring doctor will follow while treating the patient. 

But this rarely happens today when a primary care physician refers a patient to a pain clinic.  Almost never is a specific diagnosis made, but a “one-size-fits-all” pain treatment regimen is initiated.  Or worse, the pain patient is given the diagnosis of “opioid use disorder” and placed on the addiction treatment drug Suboxone, even if they have been successfully maintained for years on opioids with no abuse issues.  The referring physician may never even see the patient again. 

The upshot of this practice is that some pain clinics are treating dozens of bonafide patients without a specific medical diagnosis other than neck, back or leg pain, or “opioid use disorder.”

There are some other unacceptable non-diagnostic scenarios these days.  Severe chronic pain is often caused by a rare obscure disease such as AA or Ehlers-Danlos Syndrome.  Patients will often obtain their unusual disease diagnosis and present it to a physician for care, who declares that he/she doesn’t accept the diagnosis. 

A patient may then dare to ask, “Then what do I have and what is the treatment?”  It’s hard to believe, but some patients are being told, “I don’t accept that diagnosis, but since I don’t have another one, I can’t treat you.”

Another story commonly told these days is the patient who complains about “pain all over” and is prescribed a long list of medications, but doesn’t receive a causative diagnosis.  Some patients have gone to a dozen or more doctors, but not one has rendered a causative diagnosis.

The opioid and COVID epidemics have obscured a lot of positive diagnostic developments that have gone on behind the scenes and which greatly assist in making a causative diagnosis. Improved blood tests for inflammatory and autoimmune markers are now available. Genetic and hormone testing can not only pin down a diagnosis, but also provide a roadmap for treatment.  And contrast magnetic resonance imaging (MRI), which distinguishes spinal fluid from solid tissue, has made the specific diagnosis of spinal canal pathologies most accessible.  

Every chronic pain patient not only deserves, but needs a specific medical diagnosis so that the basic cause of their pain can be treated, as well as relieving the symptom of pain.  Without treating the underlying cause of chronic pain, the patient is often doomed to a pained life of diminishing quality until death. 

Modern medicine now has the knowledge and technology to do better.  Why aren’t we?

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis through the Tennant Foundation’s Arachnoiditis Research and Education Project and 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.   

Accepting Our Limits

By Victoria Reed, PNN Columnist

The end of summer is approaching. While it’s been a busy one for me, with a move to a new city and lots of gardening and camping, I realized that there was one thing that I had yet to do. I wanted to go to an amusement park.

Every summer as a child, my parents took me and my siblings to Cedar Point in Ohio, where we would ride the kiddy rides, play games for cheap prizes and eat the worst possible amusement park food! It was a time when there seemed to be less things to worry about, and the days seemed to stretch on forever. Those trips were always the highlight of my summer! 

Then as an older teen and young adult, I would return to Cedar Point with my sisters, friends or boyfriends to ride the newer and bigger roller coasters. I had no problems navigating the park on foot. We would walk for hours and spend a fair amount of time standing in long lines to ride the latest thrill rides. Sure, my feet were a little sore by end of the night, but it was well worth it, considering the fun I had.

Recently, as I was fondly remembering those days of my youth, I made a suggestion to my husband that we go back. We had never gone to an amusement park together and figured it would be a nice ending to an otherwise great summer. He agreed, so I went online to reserve our tickets for a day that we figured would be a slow one. It was a school day, so we presumed that the crowds would be smaller. In addition, the weather forecast called for sunshine and warm temperatures.

Once I secured our tickets, my body reminded me that I am no longer a “spring chicken” and that maybe I should reconsider how I expected to walk all day with sore joints, muscle aches and terrible fatigue. My fibromyalgia and RA weren’t going to make this as easy as it had been in the past.

Over the next few days, I tossed around the idea that I might need some assistance to be able to enjoy our day at Cedar Point. On the park’s website, I had seen that wheelchairs were available for daily rental. At the time, I disregarded that information, preferring to pretend that I wouldn’t need anything such as that. After all, I had run on my high school track team and was one of the best sprinters. Why would I need a wheelchair to enjoy an amusement park?

When I look in the mirror, I still see that 18-year-old athlete who is at the peak of her physical shape...

Not!!

Eventually, I came to my senses and went back online to reserve an electric wheelchair “just in case.” I figured I would just park it, and if I got too tired, it would be there for me to use. It was then that I realized that I must accept my limitations.

Did I want to be seen in a wheelchair? Absolutely not! Having to use a wheelchair does things to your pride and your ego. No one wants to have to use assistive devices, but sometimes we have to and accept the fact that we aren’t as able-bodied as we used to be. It’s not a shameful thing, and we shouldn’t be embarrassed by our needs.

It turned out that renting that wheelchair was a good decision, because it allowed me to enjoy the park a whole lot more than if I had to walk the entire day. My husband’s Fitbit recorded over eight miles of walking that day! There was no way I could have done that amount of walking on what turned out to be a very hot and crowded day. If I had tried, there’s no doubt that it would’ve put me in a bad flare.

Unfortunately, as you get older, your body becomes limited in what it can tolerate. Living with chronic pain and fatigue will increase your limits even more. It’s important to recognize that and make changes accordingly. Accepting our limitations, instead of fighting them, will make our lives easier and more enjoyable.

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

Seniors Missing Out on Billions of Dollars in Benefits

By Judith Graham, Kaiser Health News

Millions of older adults are having trouble making ends meet, especially during these inflationary times. Yet many don’t realize help is available, and some notable programs that offer financial assistance are underused.

A few examples: Nearly 14 million adults age 60 or older qualify for aid from the federal Supplemental Nutrition Assistance Program (also known as food stamps) but haven’t signed up, according to recent estimates. Also, more than 3 million adults 65 or older are eligible but not enrolled in Medicare Savings Programs, which pay for Medicare premiums and cost sharing. And 30% to 45% of seniors may be missing out on help from the Medicare Part D Low-Income Subsidy program, which covers plan premiums and cost sharing and lowers the cost of prescription drugs.

“Tens of billions of dollars of benefits are going unused every year” because seniors don’t know about them, find applications too difficult to complete, or feel conflicted about asking for help, said Josh Hodges, chief customer officer at the National Council on Aging, an advocacy group for older Americans that runs the National Center for Benefits Outreach and Enrollment.

Many programs target seniors with extremely low incomes and minimal assets. But that isn’t always the case: Programs funded by the Older Americans Act, such as home-delivered meals and legal assistance for seniors facing home foreclosures or eviction, don’t require a means test, although people with low incomes are often prioritized. And some local programs, such as property tax breaks for homeowners, are available to anyone 65 or older.

Even a few hundred dollars in assistance monthly can make a world of difference to older adults living on limited incomes that make it difficult to afford basics such as food, housing, transportation, and health care. But people often don’t know how to find out about benefits and whether they qualify. And older adults are often reluctant to seek help, especially if they’ve never done so before.

“You’ve earned these benefits,” Hodges said, and seniors should think of them “like their Medicare, like their Social Security.”

Here’s how to get started and some information about a few programs.

Getting Help: In every community, Area Agencies on Aging, organizations devoted to aiding seniors, perform benefits assessments or can refer you to other organizations that conduct these evaluations. (To get contact information for your local Area Agency on Aging, use the Eldercare Locator, a service of the federal Administration on Aging, or call 800-677-1116 on weekdays during business hours.)

Assessments identify which federal, state, and local programs can assist with various needs — food, housing, transportation, health care, utility costs, and other essential items. Often, staffers at the agency will help seniors fill out application forms and gather necessary documentation.

A common mistake is waiting until a crisis hits and there’s no food in the refrigerator or the power company is about to turn off the electricity.

“It’s a much better idea to be prepared,” said Sandy Markwood, chief executive officer of USAging, a national organization that represents Area Agencies on Aging. “Come in, sit down with somebody, and put all your options on the table.”

Older adults who are comfortable online and want to do their own research can use BenefitsCheckUp, a service operated by the National Council on Aging, at benefitscheckup.org. Those who prefer using the phone can call 800-794-6559.

Food Assistance: Some aging organizations are adapting to heightened demand for help from seniors by focusing attention on core benefits such as food stamps, which have become even more important as food inflation runs around 10%.

The potential to help seniors with these expenses is enormous. In a new series of reports, the AARP Public Policy Institute estimates that 71% of adults age 60 and above who qualify for the Supplemental Nutrition Assistance Program haven’t signed up for benefits.

In some cases, older adults may think benefits are too small to be worth the hassle. But seniors who lived alone received an average of $104 in food stamps per month in 2019. And at least 3 million adults 50 and above with very low incomes would receive more than $200 a month, AARP estimates.

To combat the stigma that some older adults attach to food stamps, AARP has launched a marketing campaign in Atlanta and Houston explaining that “food prices are rising and we’re all trying to stretch our grocery budgets,” said Nicole Heckman, vice president of benefit access programs at the AARP Foundation.

If the effort alters seniors’ perception of the program and increases enrollment, AARP plans to do a major expansion next year, she said.

Health Care Assistance: AARP is also working closely with community organizations in South Carolina, Alabama, and Mississippi that help older adults apply for Medicare Savings Programs and low-income subsidies for Part D prescription drug plans. It plans to expand this program next year to as many as 22 states.

The value of these health care benefits, targeted at low-income seniors, is substantial. At a minimum, Medicare Savings Programs will cover the cost of Medicare’s Part B premiums: $170 a month, or $2,040 annually, for most seniors. For older adults with the lowest incomes, benefits are even broader, with cost sharing for medical services also covered.

“Even if you think you might not qualify, you should apply because there are different rules across states,” said Meredith Freed, a senior policy analyst for KFF’s Program on Medicare Policy.

Low-income subsidies for Part D prescription drug plans, also known as Extra Help, are worth $5,100 annually, according to the Social Security Administration. Currently, some seniors get only partial benefits, but that will change in 2024, when all older adults with incomes below 150% of the federal poverty level ($20,385 for a single person in 2022) will qualify for full Extra Help benefits.

Because these health care programs are complicated, getting help with your application is a good idea. Freed suggested that people start by contacting the State Health Insurance Assistance Program in their state (contact information can be found here). Other potential sources of help are the Medicare hotline (800-633-4227) and your state’s department of aging, which can direct you to community organizations that help with applications. A list of the state departments can be found here.

Other Assistance: Be sure to check out property tax relief programs for seniors in your area as part of a broader “benefits checkup” process.

Older adults with low incomes also can get assistance with high energy bills through the Low Income Home Energy Assistance Program. Your local utility company may also provide emergency relief to seniors who can’t pay their bills. It’s worth making a call to find out, advised Rebecca Lerfelt, the retired assistant director of a Chicago-area Aging and Disability Resource Center. These resource centers help people seeking access to long-term care services and are another potential source of assistance for older adults. You can find one in your area here.

For veterans, “this may be the time to take a look at using your VA benefits,” said Diane Slezak, president of AgeOptions, an Area Agency on Aging in suburban Cook County, Illinois. “I run into a lot of people who are eligible for veterans benefits but not taking advantage of them.”

Advocates for many programs note that agencies serving older adults are facing staff shortages, which are complicating the efforts to provide assistance. Low pay is a commonly cited reason. For example, 41% of Area Agencies on Aging report staff vacancies of up to 15%, while an additional 18% report vacancies up to 25%, according to Markwood. Also, agencies have lost significant numbers of volunteers during the covid-19 pandemic.

At the same time, demand for help has risen, and clients’ needs have become more complex because of the pandemic and growing inflation.

“All of this is being amplified by the financial strains older adults are feeling,” Markwood said.

More healthcare and financial assistance programs can be found in PNN’s Patient Resources section.

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

Why ‘Dopesick’ Should Get an Emmy for Fiction

By Dr. Lynn Webster and Hazel Shahgholi

Dopesick, the eight-part Hulu series on the opioid epidemic – sorry, the OxyContin epidemic -- has been nominated for 14 Emmy awards. Based on the best-selling book of the same name by Beth Macy, most of the nominations are well-earned, from the excellent acting of Michael Keaton (nominated for Outstanding Lead Actor) to the breakout performance of Kaitlyn Dever (nominated for Outstanding Supporting Actress) as an addicted patient.

As entertainment, Dopesick is an achievement, but the awards should only be given if the admission is made that the Hulu series is almost entirely fictional. So far, the series’ makers have failed to do so, with Executive Producer Danny Strong claiming that robust research was carried out to make the series as realistic as possible.

“I had done a ton of research, conceived and sold the show before I even knew the book Dopesick existed,” Strong told The Hollywood Reporter. "I read the book, and I loved it. I thought it was a beautiful book, incredibly well done.”

The problems with the Hulu series are many-fold, mostly arising from errors, conflations and under-examinations that are littered throughout Macy’s book, as well as the fact/fiction transition necessary in the baton pass from page to screen.

Strong took many elements of Macy’s dubiously factual text at face value, picking up on the well-established narrative that Purdue Pharma’s marketing of OxyContin was the root cause of the opioid epidemic.

As a result, the series was almost literally bound to fail as an adequate representation of the true origins and spread of opioid use disorder.

OxyContin Misinformation

We know that throughout the opioid epidemic, OxyContin made up, at most, only 4% of the total market for prescription opioids. This data was available at the time of Macy’s book release in 2018 and when the Hulu series came out in 2021. It’s not difficult to find, if one searches beyond the bombast of mainstream news about opioids to focus instead on medical literature and government data.

In the first episode, Strong creates a highly dramatic, but erroneous opening scene. While being questioned by a federal prosecutor, Dr. Samuel Finnix (Michael Keaton), a fictional general practitioner, is asked under oath, “What do you think caused so many deaths in such a short period of time?”

Flashbacks intervene before Finnix states, definitively: “OxyContin.” The prosecutor then hammers home the point by asking, “So just to be clear, you are blaming numerous deaths in your region on just one medication?” And with a heavy-heart, filled with prescriber regret and his own addiction stigmatization, Finnix states, “Yes.”

This total condemnation of Purdue, the Sackler family and OxyContin resides entirely in the realm of fiction. We know from a 2012 Bloomberg BusinessWeek exposé on Florida pill mill operators that it was actually oxycodone and hydrocodone-based generics that were fueling opioid use disorder. It is this type of dangerous, OxyContin-pincered misinformation that has propagated a national misunderstanding about opioids, and kept us from moving from blaming to healing.

Rather than the devoutly religious and close-knit Mallum family, who earn their daily bread through hard work in West Virginia’s mines, the Hulu series has the Sacklers sitting down to meet at opposite ends of a table, as opposed to holding hands in prayer. The Sackler family is separated into those who have “A Shares” and those with “B Shares” in Purdue -- a split that divides the heirs and sees them wrestle over profits. As depicted in the series, the Sacklers are not a family, but a business, through and through.

Fictionalizing the Truth

The time-leaps throughout this eight-part series are anchored on the discoveries of law enforcement as it digs deep into Purdue Pharma. But this organizing principle proves thoroughly dizzying, obfuscating the “human interest” element that makes up much of Macy’s book.

Because the series is also determined to paint physicians and patients in an antagonistic relationship, we end up with just two fictional representations of “doctors” and “patients” -- Keaton’s Dr. Finnix and Dever’s Betsy Mallum, whose characters were explained by Strong in a 2021 interview with NPR, in which he praised the merits of not being “stuck to the truth.”

“If I made these characters composite characters, I get way more of these anecdotes into these arcs with fewer characters and get more truthful stories into the show," Strong said. "By fictionalizing, [emphasis added] I wouldn't be stuck to the truth of one person's life. I could use as many anecdotes as I wanted. I could achieve a more universal truth; a higher truth."

Dr. Finnix is the epitome of a “composite character” into whom most material and several arcs are heavy-handedly stuffed. He is emblematic of a problematic prescriber. We only meet three of his patients in detail — Mallum, his ex-miner patient Jonas, and a young woman named Elizabeth-Anne — all of whom become addicts. Finnix himself becomes addicted, getting high on his patients’ diverted supply. This distillation of Finnix cannot be taken as a “more universal truth,” even in a meager sense, as we shall explore.

The mechanism by which Finnix becomes addicted to OxyContin happens in a flash that straddles two episodes. One moment he is the ever-attentive country physician, happily working 16-hour days, making night calls to elderly patients with dementia to ensure all their daily meds have been duly taken, attending to the injuries of his coal-mining patients, and often delivering their children.

Finnix is a man of simple pleasures; he enjoys fishing with members of the Finch Creek community of which he forms the responsible backbone, until the devil invades the town in the form of OxyContin. Upon receiving a call about an explosion in a mine that has left several workers in critical condition, he speeds back to Finch Creek from a visit to Washington D.C. to see his late-wife’s sister, who has encouraged him to start dating again.

In his haste, Finnix doesn’t buckle-up and is T-boned by another vehicle. He suffers several broken ribs in the accident and is prescribed 20mg of OxyContin, much to his surprise, as he usually starts his patients on 10mg tablets.

Cut to Episode 4, entitled “Pseudo-Addiction.” Without any explanation of why the hitherto cautious prescriber has not had follow-up treatment with an independent physician -- we see Finnix cast in utter damnation, diverting OxyContin prescriptions for his own personal use. Presumably, adding another physician to the story would have taken up too much screen time, and undone the drama of Keaton’s lone composite character.

Dependency and Addiction

Let’s pause for a moment to unpack Strong’s haste. It is again based on a conflation made by Macy, who fails in her book to differentiate between the medical terms “dependency” and “addiction.” This is a false narrative. Addiction and dependence are related, but cannot be equated, and should not be conflated. Many drugs, including antidepressants and anticonvulsants, can cause such physiologic adaptation that abrupt withdrawal can cause serious, even life-threatening events. This is the case with opioids, too.

But being dependent is not the same as being addicted. And by not using the term “dependency” extensively in her book, Macy paints a false picture that hyperbolizes all opioid use, prescription or illicit, as inherently a kind of addiction -- when there are millions of people with chronic pain dependent on opioids, but not addicted.

Interestingly, Strong’s series does use the word “dependency” once, in Episode 4, via a nameless, testifying physician character, and in a scientifically false and unhelpful way. With cuts to Finnix locking the last of his patients’ diverted pills in a glass kitchen cabinet, before smashing said cabinet to smithereens, the unnamed physician states, “Opioids are uniquely challenging as they can change a person’s brain chemistry. But in a desperate effort to end the cycle of dependency, some people try to quit cold turkey, but the results can often be disastrous.”

It is important to note that this moment in the series can be enlarged by turning to statements made by Strong in an interview on MSNBC’s Morning Joe, in which he claimed that “you can be addicted in three days” to OxyContin.

That is blatantly false. Neural adaptation can occur as soon as ingesting the first pill. But this is not necessarily problematic, it is simple science and occurs with many drugs, not just opioids. The claim that you can become addicted to opioids in three days is simply not true, and there is no scientific evidence to support this statement. Physical dependency, which they clearly conflate with addiction, is not even a medical problem at day three, day seven, or day fourteen. It may never even become a problem.

But this question cannot even be properly attended to until the differentiation between addiction and dependency is substantiated in these depictions. Respectfully, how can Strong purport to “redefine our understanding” of something that he himself does not understand? 

Strong’s need to distill information is so extreme that Dr. Finnix is funneled into an OxyContin-self-prescribing-and-diverting-monster between the rolling of one set of credits and the opening of a new episode.

Strong’s MSNBC interview is hyperbolically backdropped by a hysterical graphic claiming over 760,000 overdose deaths — a conflated statistic that doesn’t distinguish what drugs caused the deaths. Was it OxyContin? Oxycodone? Hydrocodone? Heroin? Cocaine? Methamphetamine? Poly drug use?

Whether the deaths were due to illicit misuse, diverted pills or legitimate prescriptions is also ignored. We are only told by the reporter conducting the interview that, “OxyContin is the brand most people know.” Indeed. The opioid epidemic has become a cash-cow for misrepresentation.

MSNBC

It is important to note that pseudo-addiction is also mischaracterized in the Hulu series. It is used as a mechanism to accuse Purdue Pharma of encouraging irresponsible over-prescribing, when in fact it attends to patients in a state of severe “uncontrolled” pain. Uncontrolled pain is as devastating as it sounds, especially when we have means to treat it.

Once again, it is a concept that should be considered scientifically and medically, not simply as a harmful concept “invented” by Purdue for profit gains. Uncontrolled pain was not invented by Purdue at all, and has been studied from as early as 1989, before being expanded into the use of opioids for responsible pain management and becoming common amongst pain specialists for over three decades.

‘Selling Poison’

Dr. Finnix follows a similar path as the composite “addict” character, Betsy Mallum: from OxyContin use to chronic opioid abuse. He never moves to heroin, but he does buy OxyContin illicitly, while being schooled by a local drug dealer on how to get a faster high by crushing and snorting the pills through a straw.

It's not long before Finnix’s collapse is total. He has begun to behave uncharacteristically, beating his Purdue sales rep before manhandling him out of his office for “selling poison.”

The axe finally drops in a grizzly scene when Finnix is high during a surgical procedure. Then, while accompanying his now butchered patient to the ER, he complains to the attending doctor of rib-ache and requests OxyContin unabashedly. The doctor offers him a 10mg tablet, but Finnix ups the request to a 20mg pill in a manner that paints him as perhaps the most suspicious doctor-shopping-doctor imaginable.

The onus of representation for the addict group falls mostly on Betsy Mallum (Dever), who, when quizzed in an interview with Entertainment Weekly over the fact/fiction nature of her character replies:Yes. She's a fictional character that represents a lot of people.”

Betsy is the first patient that Dr. Finnix turns into an addict. She receives the “First-Bottle” of OxyContin, to borrow Episode 1’s title, and uses the pain medicine to continue to work at the mines despite an excruciating work-related injury.

There are two points of note here: Finnix prescribes OxyContin to her with strict instructions for when to take the pills -- one in the morning and one at night -- which Betsy does. He also provides the appropriate advice of a rest period from her grueling work in the mines. He offers to go down and talk to management himself in order for the young woman be able to take a break to aid her physical healing. Betsy does not take his advice.

This is because of the important part the socioeconomic environment plays in Betsy’s crucial and unexamined predisposition toward addiction and substance abuse disorder. She knows how the mining industry works and that, in her father’s own account, she is the smallest "but strongest” one down there.

Betsy therefore has the obligation of needing both to retain her work: she’s a small-statured female and knows she is at high-risk for disposability in a shrinking industry, but she must also fulfill a need for validation from her domineering and deeply religious father. A father who would cast her out if she were to reveal her true self: her sexuality as a lesbian involved in a behind-closed-doors relationship with fellow mine worker, Grace.

This moves us on to a pivotal point. Even though Betsy is the recipient of the “first bottle,” she dumps her prescription by Episode 3, “The Fifth Vital Sign,” without tapering of any kind and without informing Dr. Finnix. Subsequently, she descends into a world of illicit diverted pills and eventually heroin. It is the latter drug that takes her life, the night before she is to enter a Suboxone treatment program and after a conversation with Grace, when she finds out that her first love can only be a friend moving forward.

Due to her addiction, Betsy never manages to make “enough money underground” to move to Grace’s Eureka Springs, Arkansas; a real place that Grace describes to Betsy as “Oz for country queers.” Devoid of hope after losing her first love, Betsy informs her flop house drug dealer that she is entering a Suboxone treatment center the following day. “So give me one hell of a sendoff,” she states as her final, fatal words.

The Fifth Vital Sign

To move beyond the episode’s sign-posting, the show depicts the medical community’s adoption of pain as the “Fifth Vital Sign” as a ploy to fuel over-prescribing. At the time the phrase was introduced, pain was vastly under-treated, there was a pressing need to bring attention to the unmet needs of chronic pain sufferers across the nation, and to facilitate dialogue between physicians and their patients to assess their pain levels and explore treatments — with opioids being just one — to increase their quality of life.

Introducing pain as a “vital sign” was an entirely reasonable pathway to take by the medical community. Although it is reasonable to argue that pain is not a vital sign in the way that breathing and heart beats are, it is nevertheless vital to assess pain.  But once again, it was not a Purdue “invention” as the show would usher you to believe, it was first discussed by Dr. James Campbell in an address to the American Pain Society in 1995. The term has faced some controversy, but it was well-intentioned.

What Macy failed to do in her mishaps over medical research in her book, which led to Strong’s OxyContin demonization, does not befit an analysis of the overdose death of Betsy Mallum. Per scientific examination, the pivotal 1998 CDC-Kaiser Permanente Adverse Childhood Experiences (ACE) study used ten different measures of adverse childhood experiences, drawing the conclusion that that “for each traumatic event that happened to a child, they were two to four times more likely to grow up to be an addicted adult.”

The one we can outline as specific to Betsy is “parental rejection.” This is what she fears the most. When Betsy attempts to come out to her mother by stating that she “likes girls… always have… and not just as friends,” her words fall on deaf ears, with her mother quite literally pretending she didn’t hear the utterance: “Did you say something dear?”

It’s a statement Betsy’s mother later regrets, realizing its impact, but by then it is far too late. Finnix’s pre-OxyContin-addiction fishing trip during which he tries to irk Betsy’s rigid father into the enlightened mindset that being gay is not a sin but just a state of being, also misfires and leads to a demonizing, make-no-mistake style dinner scene.

Unable to live as her true self through fear of rejection and in the throes of withdrawal, Betsy burns the false-self: the one that is content sitting at home and knitting quilts with her in-denial mother.

When the news of her death is revealed, we see the camera focus on a picture of Betsy as a young child. This is also emblematic of denial; but this time not of the fictional Mallum family alone, but also of the filmmakers and Macy, who push for the narrative of the destruction of innocence via the opioid scourge.

Addiction’s Root Causes

The Mallum parents, through the zealot foisting of religion on a girl who “never believed in any of that stuff anyway,” did their daughter a deathly disservice. And they are more culpable for her death than Purdue Pharma or Dr. Finnix.

Betsy had a predisposition for substance abuse disorder, but Finnix did not. Although in Episode 4 we see him in a hallucinated waltz with his deceased wife, he seems content as a widower — although the dance scene does belie his underlying existential pain.

The filmmakers didn’t even throw in any trite backstory or anecdote of Finnix having an alcoholic father or brother — a detail that would barely be substantiating for predisposition per today’s medical rigor over addiction’s root causes. But it would have at least stimulated the viewer into questioning why this character had morphed so horrifically and so expressly.

The young Betsy, on the other hand, has a story of her own and one that would undeniably predispose her to substance abuse. Despite Strong’s claims, one must stick to individual stories to understand addiction, its roots, and the specific drugs that may come to fuel it.

By choosing to fictionalize via character composites, and by picking a “patient” so heavily predisposed to substance abuse disorder due to ACE and environmental factors, Dopesick doesn’t adequately represent the patient side of the doctor-patient relationship at all. The human element that is strong-armed into Finnix and Betsy is loaded for downfall, because that makes for good viewing.  One arc is devastating — Betsy’s — and Finnix’s is convoluted, although redemptive in the end.

Covering all bases in this fashion is hyper-unrealistic, difficult to digest, and self-serving on the part of the filmmakers in their need to enthrall their audience.

‘We Have Another Pharma Case’

There is another clandestine narrative at work in Dopesick. A prosecutor fights prostate cancer as he tries to bring Purdue to justice. After waking from a surgical procedure to remove the cancer, even while semi-conscious and in extreme post-surgical pain, he is aghast at the insistency of a nurse who tries to “force” OxyContin upon him. Heroically, he refuses and relays the tale back to his boss, who declares he made the “right choice” to fight the pain with the over-the-counter, non-narcotic Motrin.

What makes the parallel between the prosecutor and Finnix so powerful is that both characters moved from bigger towns to small West Virginian areas and both describe this life choice as the “best decision I ever made.”

The difference between the two characters is that good old Dr. Finnix, the responsible and attentive physician, falls prey to addiction almost immediately, while the representative of law enforcement holds strong.

Per the narrative of the “Iron Law of Prohibition” that this show peddles, representatives of the law must be invulnerable. The show pushes this weak theory clearly. After all, who could be more of a “drop out” than a physician, who is the biggest threat? It’s not the Sacklers, if we follow the human element, but prescribers.

This good/bad dichotomy is cemented in the last statement made by the chief prosecutor of his future plans: “We have another pharma case we’re looking into…” Tellingly, the drug company is not named, perhaps because it couldn’t be.

The fight for pharmaceutical anti-opioid justice is a good story and resonates with the public. But as a society, perhaps we should focus on addiction and its role in the human condition. Treating addiction, as opposed to distilling and misleading the public about its causes, might be a better way to slow the continuing rise of drug overdoses in America.

(Update: Dopesick won two Emmys, for outstanding lead actor and outstanding cinematography.)

Lynn R. Webster, MD, is Senior Fellow at the Center for U.S. Policy (CUSP) and Chief Medical Officer of PainScript. He also consults with the pharmaceutical industry. Lynn is the author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die.

Hazel Shahgholi is a senior editor and journalist based in New York City. Her most recent roles include Deputy Editor of amNY Metro, Editor in Chief of The Bronx Times, and Production Editor for MedPage Today.


My Renewed Fight for Disability

By Mia Maysack, PNN Columnist

There are millions of people who are figuratively standing in line, waiting to be granted benefits under Social Security Disability Insurance or SSDI. It usually begins with a person filing a disability application on their own behalf, declaring that they are unable to work, followed by the certification of medical professionals. They are the first baby steps in what can be a very long process. My application took four years before it was approved.

To get it, I represented myself in a court of law and essentially begged on my knees, pleading with detailed reasoning as to why my personal situation affects and at times strictly prohibits any version of what could be considered my working “ability,” let alone “normalcy.”

Not too long ago, I received a notice that a decision was to be made on whether or not I still live with a post-bacterial meningitis related traumatic brain injury that causes intractable and chronic mega-migraines, along with cluster headaches and nerve damage. I do, in case anybody was wondering.

But after two Social Security assigned medical reviews, it was declared that I am no longer disabled. News to me! The memo must have gotten lost because my body has yet to receive it.

Having worked since the age of 14, up until a few years ago, and only after pushing myself almost to the point of death, the disability checks I’ve been receiving consist of money I contributed to the taxpayer pot. I was grateful for it, knowing that many others have it worse in their own ways, even though the dollar amount is limited to covering a shelter over my forever hurting head.

The gift has been not to have to wrack my brain any further, figuring out where I can live. This has been a blessing, because I am then able to promote the full-time job that is self-care demanded by my ailments.

Constructing a non-mainstream path and not allowing challenges to completely dictate or entirely limit my overall quality of life does not lessen what I endure. Nor does it suggest having been cured or even improved.

It is generally understood that a governing “system” is in place to protect those of us who are not attempting to cheat or scheme to get disability. But let me tell you, our skeletal, muscular, nervous, endocrine, cardiovascular, lymphatic, respiratory, digestive, urinary and reproductive systems are continuously being violated and discriminated against by that very same “system.”  

The mourning of past lives and broken dreams is a permanent condition for me. The trauma of living and reliving what has transpired never ends. My symptoms are chronic and unpredictable, which inconveniences no one more so than it does me.

My body, my rights?  My ass.

Whether I can walk on the date of my upcoming appeal or have to crawl, I’ll fight however I can to make these points heard on behalf of everybody.           

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 also the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.