My Life Is on the Line Due to Rx Opioid Shortages

By Christine Kucera, Guest Columnist

On May 24, I had my regularly scheduled pain management appointment. The prescription for my normal regimen of 10mg oxycodone was sent electronically to my local CVS pharmacy. About an hour later, I received a text from CVS saying they received the prescription from my doctor.

I followed up later through their automated system. That is the moment of shocking revelation when I learned that my prescription was not going to be filled on time, and that it may not be ready until a week after my fill date.

Utterly panicked, heart racing, thinking and speaking a mile a minute, I contacted the pharmacy. They confirmed they were out of 10mg oxycodone tablets.

“What am I supposed to do?” I asked. A woman who I don’t know replied that I should try contacting other pharmacies.

Really? I can’t do that. Pharmacies won’t tell me, the patient, if they have a supply of a controlled substance. So she looked it up and said it looks like “X” pharmacy has it and that I should have my doctor send the prescription there. Unfortunately, by the time my provider received the message, it was too late.

I made multiple calls to another pharmacy and they were extremely rude. I called my pharmacy again. This time I spoke with a pharmacist that knew me. He was very understanding, as we discussed what to do next.

CHRISTINE KUCERA

We came up with a plan. He said to have my doctor send him a prescription for 5mg oxycodone. I immediately emailed my provider about the shortage and asked him to send a new prescription for 5mg, since they were out of 10mg tablets.

It was a very long night and I was extremely anxious waiting for a reply from my provider. As a long-term opioid patient of 30 years with intractable pain, I’ve been through the unimaginable, especially after the CDC published its first opioid guideline. Since 2016, I’ve been force tapered to suboptimal treatment levels, denied pain medication during multiple hospitalizations, and told to take Tylenol.

A surgeon even used prescription fentanyl on me during an interventional procedure after being told it doesn’t work on me – leaving me awake and screaming during the procedure. That’s just to name a few examples. Believe me, there are many more.

My thoughts are racing out of control. I can’t do this anymore. I can’t live life with unrelenting, unmanaged pain all day, every day. I’m barely holding on now, trying hard not give up hope. It’s not easy living in a body that’s under assault from an invisible invader, leaving my entire body riddled with rare diseases, along with severe bone, nerve, connective tissue and organ pain.

As a person with severe medically induced PTSD, I can fully recall all of the previous times I was forced off my managed regime of opiate medication. This time it’s going to be at the hands of the DEA, which has intentionally created shortages of oxycodone.

Next day arrives, a new prescription for 5mg is sent and I sigh with relief. It was short lived. Another pharmacist said my insurance company won’t cover the 5mg substitute without prior authorization. Completely losing control of my emotions, I asked why do I need another prior authorization?  My daily limit of 90 morphine milligram equivalents (MME) didn’t change, just the dose of the tablets

“It’s because of daily quantity limits,” the pharmacist replied.

Are you freaking serious?  I’m out of oxycodone as of today and you’re saying I can’t have 2 weeks of a substitute because there is no supply anywhere of 10mg and my insurance has quantity limits on 5mg doses?  I was angry and upset. This is so wrong! What am I supposed to do?

To that, the pharmacist says, “You can pay out of pocket.”

I didn’t have a choice, although I knew what happens from paying out of pocket with cash and sending prescriptions to new pharmacies. Those are red flags for prescription drug monitoring programs (PDMPs).

What’s next CDC and DEA? You’ve fabricated the great Opioid Lie and created policies that affect all pain care in all settings. Created new burdens for disabled and chronically ill patients. Created an opioid guideline that doesn’t allow for individualized treatment and places limits on prescriptions. You’ve shackled doctors with no options but to provide inadequate pain care or abandon patients altogether.

Now patients and their providers are having to deal with DEA created shortages of essential medicines. This has got to stop! Pain patients have never been the driver behind the overdose crisis. Anti-opioid prohibition policies are harming, torturing and killing U.S. citizens.

What do I do? There are no protections or even a set of procedures in place to assist patients and providers when there are shortages of controlled substances. It really is a nightmare situation. I feel helpless. The shortage is not my fault, the restrictions have gone too far, and my life is on the line.

Christine Kucera lives with psoriatic arthritis, spondyloarthropy, spondylitis, polyarthritis, sacroiliitis, degenerative joint disease, dermatomyositis, mixed connective tissue disease, spinal radiculopathy, hypoparathyroidism, rare endocrine tumors, psoriasis, endometriosis stage IV, pelvic adhesive disease, and other painful conditions. 

Prior to becoming disabled, Christine was a healthcare research systems developer and analyst for federally funded CMS, AHRQ, and NIH grants and programs. 

Do you have a “My Story” to share? Pain News Network invites other readers to share their stories about living with pain and treating it. We are particularly interested in your experiences dealing with current drug shortages. Send your stories to editor@painnewsnetwork.org.

Denials of Health Insurance Claims Are Rising

By Elisabeth Rosenthal, KFF Health News

Millions of Americans in the past few years have run into this experience: filing a health care insurance claim that once might have been paid immediately but instead is just as quickly denied.

If the experience and the insurer’s explanation often seem arbitrary and absurd, that might be because companies appear increasingly likely to employ computer algorithms or people with little relevant experience to issue rapid-fire denials of claims — sometimes bundles at a time — without reviewing the patient’s medical chart. A job title at one company was “denial nurse.”

It’s a handy way for insurers to keep revenue high — and just the sort of thing that provisions of the Affordable Care Act (ACA) were meant to prevent. Because the law prohibited insurers from deploying previously profit-protecting measures such as refusing to cover patients with preexisting conditions, the authors worried that insurers would compensate by increasing the number of denials.

And so, the law tasked the Department of Health and Human Services with monitoring denials both by health plans on the Obamacare marketplace and those offered through employers and insurers. It hasn’t fulfilled that assignment. Thus, denials have become another predictable, miserable part of the patient experience, with countless Americans unjustly being forced to pay out-of-pocket or, faced with that prospect, forgoing needed medical help.

A recent KFF study of ACA plans found that even when patients received care from in-network physicians — doctors and hospitals approved by these same insurers — the companies in 2021 nonetheless denied, on average, 17% of claims. One insurer denied 49% of claims in 2021; another’s turndowns hit an astonishing 80% in 2020. Despite the potentially dire impact that denials have on patients’ health or finances, data shows that people appeal only once in every 500 cases.

Sometimes, the insurers’ denials defy not just medical standards of care but also plain old human logic. Here is a sampling collected for the KFF Health News-NPR “Bill of the Month” joint project.

• Dean Peterson of Los Angeles said he was “shocked” when payment was denied for a heart procedure to treat an arrhythmia, which had caused him to faint with a heart rate of 300 beats per minute. After all, he had the insurer’s preapproval for the expensive ($143,206) intervention. More confusing still, the denial letter said the claim had been rejected because he had “asked for coverage for injections into nerves in your spine” (he hadn’t) that were “not medically needed.” Months later, after dozens of calls and a patient advocate’s assistance, the situation is still not resolved.

• An insurer’s letter was sent directly to a newborn child denying coverage for his fourth day in a neonatal intensive care unit. “You are drinking from a bottle,” the denial notification said, and “you are breathing on your own.” If only the baby could read.

• Deirdre O’Reilly’s college-age son, suffering a life-threatening anaphylactic allergic reaction, was saved by epinephrine shots and steroids administered intravenously in a hospital emergency room. His mother, utterly relieved by that news, was less pleased to be informed by the family’s insurer that the treatment was “not medically necessary.”

As it happens, O’Reilly is an intensive-care physician at the University of Vermont. “The worst part was not the money we owed,” she said of the $4,792 bill. “The worst part was that the denial letters made no sense — mostly pages of gobbledygook.” She has filed two appeals, so far without success.

Some denials are, of course, well considered, and some insurers deny only 2% of claims, the KFF study found. But the increase in denials, and the often strange rationales offered, might be explained, in part, by a ProPublica investigation of Cigna — an insurance giant, with 170 million customers worldwide.

ProPublica’s investigation, published in March, found that an automated system, called PXDX, allowed Cigna medical reviewers to sign off on 50 charts in 10 seconds, presumably without examining the patients’ records.

Decades ago, insurers’ reviews were reserved for a tiny fraction of expensive treatments to make sure providers were not ordering with an eye on profit instead of patient needs.

These reviews — and the denials — have now trickled down to the most mundane medical interventions and needs, including things such as asthma inhalers or the heart medicine that a patient has been on for months or years. What’s approved or denied can be based on an insurer’s shifting contracts with drug and device manufacturers rather than optimal patient treatment.

Automation makes reviews cheap and easy. A 2020 study estimated that the automated processing of claims saves U.S. insurers more than $11 billion annually.

But challenging a denial can take hours of patients’ and doctors’ time. Many people don’t have the knowledge or stamina to take on the task, unless the bill is especially large or the treatment obviously lifesaving. And the process for larger claims is often fabulously complicated.

The Affordable Care Act clearly stated that HHS “shall” collect the data on denials from private health insurers and group health plans and is supposed to make that information publicly available. (Who would choose a plan that denied half of patients’ claims?) The data is also supposed to be available to state insurance commissioners, who share with HHS the duties of oversight and trying to curb abuse.

To date, such information-gathering has been haphazard and limited to a small subset of plans, and the data isn’t audited to ensure it is complete, according to Karen Pollitz, a senior fellow at KFF and one of the authors of the KFF study. Federal oversight and enforcement based on the data are, therefore, more or less nonexistent.

HHS did not respond to requests for comment for this article.

The government has the power and duty to end the fire hose of reckless denials harming patients financially and medically. Thirteen years after the passage of the ACA, perhaps it is time for the mandated investigation and enforcement to begin.

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

Pain Care Should Be Individualized, Without Interference from Others

By Barby Ingle, PNN Columnist 

Trigeminal neuralgia, arachnoiditis, Ehlers Danlos syndrome and Complex Regional Pain Syndrome (CRPS) have all been called the “suicide disease” – the worst pain possible. But saying which disease or condition causes the most pain is subjective because people experience pain differently.  

• According to U.S. News & World Report, passing a kidney stone is one of the most painful medical conditions you can have.  

• News Medical Life Sciences lists sickle cell disease as one of the 20 most painful chronic conditions, with episodes of pain occurring when sickle-shaped red blood cells block small blood vessels.  

• McGill University in Canada has a “pain index” based on a questionnaire that asks people to describe what kind of pain they experience. The index consistently lists CRPS as the worst known pain to humans.

• Verywell Health reports that fibromyalgia is one of the most common pain conditions, affecting 10 million people in the U.S. and causing widespread body pain, sleep problems, fatigue and distress.  

After living with multiple pain conditions for over 20 years and speaking with tens of thousands of other patients, I no longer believe it matters which type of pain a person has or who has the most pain. We all experience pain. How much pain we feel depends on the individual and a host of other factors, such as genetics, life experiences, and whether effective treatment is available and affordable. That is what matters.

When we do not manage pain effectively, suicides go up. We also see drug abuse and misuse rise. According to a report by the National Institute on Drug Abuse, about 5% to 7% of drug overdose deaths in the U.S. are intentional suicides. Many of those deaths are pain patients.

Since 2011, we have seen a steady decrease in opioid prescribing. Be it acute or chronic, providers are weary of prescribing opioids for pain. It’s not because opioids don’t work. More often than not, the reason they stop prescribing is because they have invested so much into becoming a provider (education, cost, time, family and social connections) that they are now at risk of losing due to laws and medical guidelines based on misleading information about opioids. 

We need to get away from the generalities of treating pain and into individualized patient care. It may or may not involve pain medication, surgery, implants, cognitive therapy and other treatments. For those who have the audacity to say that anyone else should remain in pain because you are not comfortable with their form of treatment -- shame on you.

I have chosen not to use opioids for over 10 years because I have other options that work for me. I want all people to get whatever treatment they need to control their pain. It will be different for each of us and whatever condition or comorbidities we live with. We all need and deserve to get the care we choose after careful consideration, research and discussions with our providers. Laws and guidelines should not be used to take away medications that have been available since the beginning of time.

At a recent pain education event I attended, I heard the argument that there were no long-term studies on the use of opioids for pain. But there are millions of patients who have taken opioids safely for years who will tell you otherwise. Opioids actually gave them more life, because they were able to work, exercise and function when their pain was properly managed.

As a pain patient myself, I want the freedom to do what is best for me. I am currently working on getting access to ketamine infusions again after my ketamine clinic closed down. I want that same right in selecting treatment to be available to others. It should be left to patients and their providers to decide on treatment, without interference from others.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com.   

The Fading Power of the White Coat

By Carol Levy, PNN Columnist

I wrote a column in 2018 about the arrogance and poor listening skills of some doctors ("Tyranny of the White Coat”). I ended it with these words: “It’s a sad state of affairs when you take a liking to a doctor because they took the rare action of actually listening, hearing and respecting their patient.”

Most physicians see the exam room as a teeter-totter; the doctor sitting high up on one side and the patient below them on the ground. That is often still the case, but I notice when I go to blogs written by doctors (such as KevinMD), that they often write about the loss of respect they find almost everywhere.

Doctors no longer have the “power of the white coat.” In public settings such as hospitals and restaurants, the staff no longer looks at them in awe or bow down to their titles: “Yes doctor, your table is waiting for you.”

I understand the sadness from losing status as the top gun, but I thought most doctors went into medicine to help their patients, not for the superiority their degree gives them. I thought the work they put in at medical school was to learn their craft, not to use as a banner of privilege: “I spent years in school and had to work very, very hard to get where I am. Therefore, I deserve to be looked at as superior.”  

I also go to blogs written by patients, many with chronic pain, and I read the opposite: “How dare these 'doctors' think they're so much better than me? I shouldn't have to be obeisant to them, yet that's what they want from me.”

What if we didn't have the hierarchy of the exam room? What if we were able to come together as patients and doctors, to have a round table or focus group where we could talk freely? How educational that would be, for both sides.

We could then look at doctors as our equals and they could see us in the same way -- not someone to be talked down to. Too many doctors seem to believe we are uninformed, misinformed or just ignorant, and need to be spoken to like a 12-year-old.

We might then see the doctor as a person, someone with more knowledge and experience with our diseases and disorders. Someone who can be a helper, not a protagonist. We could then see them as teachers, which in many ways they are.

What a great appointment that would be. We’d smile at each other and see one another as human.

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.

Chatbot ‘Doctor’ Preferred Over Real Ones

By Crystal Lindell, PNN Columnist

Would you rather get your medical advice from a human physician or a chatbot powered by artificial intelligence?

According to an unusual study recently published in JAMA, you’d be better off listening to the chatbot, which gave advice that was rated significantly better both in quality and empathy.  

A team of researchers asked the chatbot -- called ChatGPT – 195 hypothetical questions a patient might ask that were posted online in a Reddit forum called "Ask a Doctor."  A team of healthcare providers then compared the chatbot’s responses to those posted by actual physicians in the same forum.

The responses from ChatGPT were the clear winners. The evaluators preferred the chatbot responses over the physicians’ answers about 79% of the time. The average rating for the chatbot was "better than good," while the physicians overall were given a lackluster grade of "acceptable response."

The evaluators also gave the ChatGPT high marks for empathy, while the physicians’ responses were rated as only “slightly empathetic.”

One of the hypothetical questions involved a patient who accidentally swallowed a toothpick and wanted to know if they were at risk of dying. Here’s how the chatbot and a physician responded:

Physician Response:

If you've surpassed 2-6 (hours), chances are they've passed into your intestines. Which means it can't be retrieved easily.

Many people can swallow razorblades and toothpicks without issues. In case you develop stomach ache, then don't hesitate seeking out an emergency room, and remember to point out the swallowed tooth pick. For now, they won't be doing much.

Chatbot Response:

It's natural to be concerned if you have ingested a foreign object, but in this case, it is highly unlikely that the toothpick you swallowed will cause you any serious harm.

Toothpicks are made of wood, which is not toxic and will not cause poisoning. However, it is possible for a toothpick to cause injury if it becomes stuck in the throat or if it punctures the digestive tract. However, this is unlikely to happen with a dull, cooked toothpick that is only 2 cm long.

If you are experiencing any discomfort or symptoms such as abdominal pain, difficulty swallowing, or vomiting, it is important to contact a healthcare provider for further evaluation. However, if you are not experiencing any symptoms, it is safe to assume that the toothpick has passed through your digestive system, and you do not need to be concerned.

It's always a good idea to be cautious when consuming food and to remove any foreign objects before eating. It's understandable that you may be feeling paranoid, but try not to worry too much. It is highly unlikely that the toothpick will cause you any serious harm.

Which answer would you rather get as a patient? The evaluators preferred the chatbot’s response to the toothpick question, as they did for other questions about a head injury, a lump possibly being cancerous, and if getting bleach in your eye might cause blindness. The chatbot response to those questions also got high scores for empathy.

As a chronic pain patient, I have to admit I felt a little smug when I first saw the headlines about this research. My initial thought was, of course, the chatbot was more empathetic than the doctors! Doctors are often mean, rude and dismissive. I even wrote a column about using a weird trick to manage their egos.

Is this the beginning of the end for human doctors? The short answer is: No. This was a very narrow study with a number of limitations. The authors said they were only trying to look into the possibility of physicians using artificial intelligence (AI) to essentially ghostwrite responses to patients.  

“Chatbots could assist clinicians when messaging with patients, by drafting a message based on a patient’s query for physicians or support staff to edit,” they said. “Such an AI-assisted approach could unlock untapped productivity so that clinical staff can use the time-savings for more complex tasks, resulting in more consistent responses and helping staff improve their overall communication skills by reviewing and modifying AI-written drafts.”

The possibilities for using AI in medical settings are only just emerging, and it could radically change how we think of healthcare and how doctors think of us.

One thing that might improve is how doctors and patients communicate. I know doctors are capable of giving more empathetic answers on their own. The problem is, in the United States at least, they usually just don’t have the time to do so. If AI can help, we should let it.  

However, it should be noted that several authors of the study, which was led by researchers at the University of California San Diego, disclosed ties to the artificial intelligence industry, which means they may financially benefit from any attempts to sell AI to medical professionals.

Also, as the researchers acknowledge, the study doesn’t prove that chatbots are better doctors than actual doctors, just that their answers were better. Physicians would likely respond to medical questions differently in an office setting, as opposed to an online post.

Researchers also did not assess the chatbot responses for accuracy — which is a pretty big deal when it comes to medical care. It’s one thing to write an empathetic reply, it’s another to correctly diagnose and decide on a treatment.

That said, when comparing the various responses, the chatbot did seem to give similar advice as the doctors, which makes me think they were mostly accurate. That may not sound great, but consider how often doctors are wrong. Medical errors are one the leading causes of death in the U.S.

AI technology is rapidly improving, and it’s impossible to predict what it will be capable of in the coming years. But I do believe it’s going to radically change many aspects of our lives, including healthcare. Hopefully, it makes it better. But at this point, I’ll settle for not making it worse.  

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. 

Should I Laugh or Should I Cry?

By Mia Maysack, PNN Columnist

Right now, I’m having one of those moments when the pain level is so high, it's almost unbelievable. It made me remember when a fellow chronically ill friend shared a story about her time in a grocery store.  She said that it felt as though a knife was cutting her open, all while she was just attempting to buy a few things.

Her response to this experience was laughter!

Perhaps you've heard the saying, "Should I laugh or should I cry?" Personally, I feel as though there's something to that. As I write this, I'm turning to the written word as my savior and deliverer from the wretched flare I'm in the midst of. I can barely see, let alone keep thoughts straight in my mind. But I'm choosing to smile, at least on the inside, because I'm thinking of my friend.

She said she laughed because it was comical in that moment -- her essentially feeling like the walking dead but having to function normally in a public place. No one else in the store could possibly know the inner crisis she was having. 

I can attest to this sort of thing making me feel a little crazy. Perhaps what helps to push us toward the bright side is the madness that's produced along the way. 

It’s been said that laughter is the best medicine. I've yet to have an ailment cured by laughing, but it's important to remember that despite our health or hardships, we possess a playful side. We are more than just a condition or diagnosis, there are other aspects of our identities. We're not what has occurred to us; what we are becoming is a result of our choice.

I'm choosing to laugh about the fact I've been attempting to get in touch with a provider, but cannot seem to get a call back. A previous appointment with the provider was so draining it left me feeling worse than I did upon arrival. It's all a reminder of how much it took to reach out to the provider in the first place, and the countless other let downs when the healthcare system falls short, which is most of the time. Healthcare is a joke and patients are often the punchline.

A common response to a person who is struggling is to advise them to seek help. That is a valid suggestion, but if “help” is the remedy, then it must be available and within reach.

We need to see what we need within ourselves, not to solely exist, but to excel in our experiences -- as opposed being dependent on systems that don’t serve our interests.

An example:  Recently when the exact opposite thing I felt like doing was grinning, I beamed in an effort to trick my brain into stimulating an increase in endorphins. This technique is readily available to me at any point, plus it’s free and doesn’t cause any adverse side effects! 

Laughter is another great way to assist in boosting mood, as is exercise to any extent that’s doable. The idea is to consciously work to counteract the pain signals that are firing as best we can, while living with unmanageable pain of one sort or another. 

Presently, I am choosing to be mentally mindful and to rejoice in breathing. This is how I prevail. I also find solace in knowing that what I’ve already endured will give me the strength I’ll need to face whatever is coming. Until then, I’ll strive to greet every moment that tests me with a smile. 

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. 

How to Manage Dental Care with Chronic Pain

By Dr. Michael Cooney, Guest Columnist

More than 75 percent of the chronic pain patients we have treated also suffer from chronic dental issues. Apprehension about dental care from our neuropathic pain community is certainly understandable. But bypassing care of your teeth, gums and mouth can allow potential problems to grow and ultimately become more painful when treatment is no longer an option. It then becomes a necessity.

I sought out the advice of a dentist who specializes in treating people with chronic pain conditions and asked him for dental hygiene maintenance and treatment guidance. Here’s what he told me.

Do I Need a Special Dentist?

First, take time to perform due diligence in locating a dentist who treats patients with chronic nerve pain and understands your special needs. Once you’ve found one, ask about specific tools, techniques and anesthesia options to help minimize and control any potential pain before and after your dental treatment.

One unfortunate byproduct of chronic pain management is the common use of medications. Be sure to address your medication use with the dentist beyond just listing them on your intake forms. These medications commonly contribute to xerostomia (dry mouth). Without adequate saliva, tooth decay and gum disease are more likely to flourish, and also cause:

• Interference with normal swallowing

• Taste disorders (dysgeusia)

• Speech difficulty

• Inability to maintain oral tissue integrity

• Mucositis (chronic mouth irritation and inflammation)

• Dental decay

• Erosion

To combat dry mouth, hydrate your mouth by sipping water throughout the day. Chewing sugarless gum can also help. You may also wish to use a moisturizing mouth spray.

Periodontal Disease

Over time, gums can pull away from the teeth and form pockets which become infected. The body’s immune system fights the bacteria as plaque spreads and grows below the gum line. Bacterial toxins and the body’s natural response to infection start to break down the bone and connective tissue that hold teeth in place.

If not treated, the bones, gums and tissue that support the teeth are destroyed, requiring the diseased teeth to be extracted.

Understandably, people with chronic pain want to avoid potential pain triggers, including during dental visits. So when tooth or gum pain or sensitivity presents, it is often in the latter stages of decay when the tooth cannot be salvaged. The unfortunate result is the need to remove the tooth.

Best Defense Is a Strong Offense

At home, brush your teeth a minimum of twice daily and floss. Yes, we know flossing is gross, but isn’t it better to get that stuff out of your mouth and into the garbage?

Give your tongue a good brushing to remove bacteria that leads to plaque and chronic bad breath. Twice-yearly teeth cleanings and exams are also necessary to prevent and offset any issues before they become more serious and require more invasive treatment.

Before your visit, talk with your treating physician to determine any special protocol or medication requirements needed. Be sure that your doctor and dentist are in touch to fully understand the nature of your care needs.

After cleaning or dental treatment, allow extra time to rest and recover. Eat soft food for a few days and avoid foods (meats, popcorn, hard candy) that can potentially become lodged in those clean and disease-free pearly whites!

Preventing dental disease can improve holistic health, allowing your immune system to perform at its optimal level and provide the highest quality of daily life possible.

Michael Cooney, DC, is Clinical Director of Calmare NJ.  He is one of the original Calmare certified providers in the U.S. to use scrambler therapy to significantly reduce or alleviate treatment-resistant neuropathic pain.

Cooney specializes in treating children, adults and seniors battling medication and treatment-resistant neuropathy due to fibromyalgia, CRPS / RSD, diabetes, shingles (PHN), post-surgical pain and pain after chemotherapy (CIPN).

Retraining Your Brain Can Reduce Pain

By Dr. Joshua Pate, University of Technology Sydney

For every feeling we experience, there is a lot of complex biology going on underneath our skin.

Pain involves our whole body. When faced with possible threats, the feeling of pain develops in a split second and can help us to “detect and protect.” But over time, our nerve cells can become over-sensitized. This means they can react more strongly and easily to something that normally wouldn’t hurt or would hurt less. This is called sensitisation.

Sensitisation can affect anyone, but some people may be more prone to it than others due to possible genetic factors, environmental factors or previous experiences. Sensitisation can contribute to chronic pain conditions like fibromyalgia, irritable bowel syndrome, migraine or low back pain.

But it might be possible to retrain our brains to manage or even reduce pain.

Our body senses possible threats via nerve endings called nociceptors. We can think of these like a microphones transmitting the word “danger” through wires (nerves and the spinal cord) up to a speaker (the brain). If you sprain your ankle, a range of tiny chemical reactions start there.

When sensitisation happens in a sore body part, it’s like more microphones join in over a period of weeks or months. Now the messages can be transmitted up the wire more efficiently. The volume of the danger message gets turned way up.

Then, in the spinal cord, chemical reactions and the number of receptors there also adapt to this new demand. The more messages coming up, the more reactions triggered and the louder the messages sent on to the brain.

And sensitisation doesn’t always stop there. The brain can also crank the volume up by making use of more wires in the spinal cord that reach the speaker. This is one of the proposed mechanisms of central sensitisation. As time ticks on, a sensitised nervous system will create more and more feelings of pain, seemingly regardless of the amount of bodily damage at the initial site of pain.

When we are sensitised, we may experience pain that is out of proportion to the actual damage (hyperalgesia), pain that spreads to other areas of the body (referred pain), pain that lasts a long time (chronic or persistent pain), or pain triggered by harmless things like touch, pressure or temperature (allodynia).

Because pain is a biopsychosocial experience (biological and psychological and social), we may also feel other symptoms like fatigue, mood changes, sleep problems or difficulty concentrating.

Neuroplasticity

Around the clock, our bodies and brain are constantly changing and adapting. Neuroplasticity is when the brain changes in response to experiences, good or bad.

Pain science research suggests we may be able to retrain ourselves to improve wellbeing and take advantage of neuroplasticity. There are some promising approaches that target the mechanisms behind sensitisation and aim to reverse them.

One example is graded motor imagery. This technique uses mental and physical exercises like identifying left and right limbs, imagery and mirror box therapy. It has been tested for conditions like complex regional pain syndrome (a condition that causes severe pain and swelling in a limb after an injury or surgery) and in phantom limb pain after amputation.

Very gradual exposure to increasing stimuli may be behind these positive effects on a sensitised nervous system. While results are promising, more research is needed to confirm its benefits and better understand how it works. The same possible mechanisms of graded exposure underpin some recently developed apps for sufferers.

Exercise can also retrain the nervous system. Regular physical activity can decrease the sensitivity of our nervous system by changing processes at a cellular level, seemingly re-calibrating danger message transmission. Importantly, exercise doesn’t have to be high intensity or involve going to the gym. Low-impact activities such as walking, swimming, or yoga can be effective in reducing nervous system sensitivity, possibly by providing new evidence of perceived safety.

Researchers are exploring whether learning about the science of pain and changing the way we think about it may foster self-management skills, like pacing activities and graded exposure to things that have been painful in the past. Understanding how pain is felt and why we feel it can help improve function, reduce fear and lower anxiety.

Don’t Go It Alone

If you have chronic or severe pain that interferes with your daily life, you should consult a health professional like a doctor and/or a pain specialist who can diagnose your condition and prescribe appropriate active treatments.

In Australia, a range of multidisciplinary pain clinics offer physical therapies like exercise, psychological therapies like mindfulness and cognitive behavioural therapy. Experts can also help you make lifestyle changes to improve sleep and diet to manage and reduce pain. A multi-pronged approach makes the most sense given the complexity of the underlying biology.

Education could help develop pain literacy and healthy habits to prevent sensitisation, even from a young age. Resources, such as children’s books, videos, and board games, are being developed and tested to improve consumer and community understanding.

Pain is not a feeling anyone should have to suffer in silence or endure alone.

Joshua Pate, PhD, is a Senior Lecturer in Physiotherapy at University of Technology Sydney. He is on the Scientific Program Committee for the Australian Pain Society.

Josh’s research focus is on childhood pain. He is the author of a series of five books designed to help children learn and talk about pain, called Zoe and Zak's Pain Hacks.

This article originally appeared in The Conversation and is republished with permission.

How Realistic Is a Possible Treatment for Hypermobile EDS?

By Crystal Lindell, PNN Columnist

Ever since I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) back in 2018, I’ve spent countless hours contemplating what my life would be like if there was an effective treatment.

Last week, Tulane University School of Medicine pushed that question to the forefront. They announced that they may have found a potential cause of hEDS and hypermobility in general. They also theorized a potential treatment.

Ehlers-Danlos Syndrome (EDS) creates fragile connective tissue, which can cause a range of other symptoms including joint pain, digestive trouble, migraines and more.  

Tulane researchers proposed that a variation of the MTHFR gene that causes a deficiency of folate – the natural form of vitamin B9 – could hold the key to hypermobility and a range of connective tissue disorders such as EDS. As for treatment, they hypothesized that methylated folate — which is folate that is already processed — could be a possible treatment for the myofascial pain that’s common for hypermobile patients. They published these preliminary findings in the journal Heliyon.

First, it should be noted that none of this was based on a clinical study of patients. Rather, it’s a proposal that they believe should be researched further. As such, there’s been some valid criticism of Tulane’s announcement from the EDS community. Was it premature? Will any of this hold up in a peer-reviewed study? Or are they just giving false hope to the thousands of EDS patients desperate for some good news?

As an EDS patient myself, I understand those concerns and I very much sympathize with them. Many of us have spent too much time being dismissed by doctors, and too much money on treatments that don’t end up working.

Unfortunately, I think we’re going to have to live in the uncertainty right now. We won’t know if this is a viable option until we get a peer-reviewed study. But I am glad that they are looking into this and sharing these types of updates as the research progresses. I’d rather be informed along the way than only be told at the end of the process.

What Would a Treatment Mean for Patients?

What if their theory is correct though? Is that a good thing? I have to confess, my feelings about it are complicated.

The thing about EDS is that it’s different for everyone. As it stands, most doctors treat the symptoms, which, as mentioned above, vary widely. For me, the most debilitating one is intercostal neuralgia — which is not a type of myofascial pain. As such, it seems unlikely that methylated folate would do much to treat it.

But hey, maybe methylated folate is more of a preventative treatment? That alone would be an incredible advancement for hEDS patients.

The question is, would this treatment impact anything else? Do they know if it would only address myofascial pain? Or could it also help with other symptoms? And would that even be a good thing if it did?

EDS touches every aspect of my body and even most aspects of my personality. There’s the velvety skin everyone comments on when they shake my hand. And the constant comments about how I look for my age, which also seems to be related to how EDS impacts my skin. Would methylated folate treatment change that at all? How so? And what would I end up looking like?

The most well-known EDS symptom is probably loose joints, which means they easily overextend. For me, that’s meant a lifetime of sprained ankles and joint pain. But again, what happens if methylated folate changes that? My joints may be loose, but they’re the only ones I’ve ever known. Would stiffening them up actually help me at this point? Or would I have to re-learn how to move my own body?

What about my mind? EDS patients have higher than average rates of neurodivergence like autism and ADHD. They also have higher rates of mental health issues like depression and anxiety. Could this treatment change our brains too? Or, if not, what if they eventually find a treatment that does? Would it alter aspects of people’s personalities?

There’s also the more logistical issue of EDS as a name at all. According to the National Library of Medicine, a syndrome refers to a group of symptoms and physical findings without a direct cause. Once a cause is found, the symptoms are typically renamed as a “disease.” So, if the researchers at Tulane did find a cause, what do we have? Ehlers-Danlos disease? EDD?

One thing we do know is that EDS and hypermobility cause immeasurable pain and suffering for a lot of people, so we do need more research into potential treatments. Time will tell if folate treatment proves effective or not, but either way, I hope that there are a lot more potential treatments coming.

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. 

We Need Better Treatments for Long Covid, Fibromyalgia, Chronic Fatigue and More

By Dr. Seth Lederman

Headlines about COVID have faded, and the United States will soon turn the page on public emergency status for the pandemic. The virus no longer dominates most of our lives, yet there are still thousands of new hospitalizations daily and an estimated 15 million Americans currently suffer from Long COVID.

The deep impact of long-haul cases has contributed to a surge of patients with disabling conditions, who are often misdiagnosed or treated ineffectively. More than one in five people infected with COVID-19 develop Long COVID and its constellation of physical and neurological symptoms. The persistent pain, fatigue, sleep problems and brain fog are similar to two other post-infectious syndromes, fibromyalgia and chronic fatigue syndrome (CFS/ME).

A recent study of both conditions and Long COVID documented that the physical and cognitive impairments of Long COVID were exacerbated in people previously diagnosed with CFS/ME or fibromyalgia. These types of chronic overlapping pain conditions have long been recognized by the National Institutes of Health (NIH), and the president’s National Research Action Plan on Long COVID similarly makes the connection between CFS/ME and Long COVID.

More than 50 million people struggle with these neurological illnesses every year in our country, and the burden of their chronic diseases comes at incalculable personal harm, along with billions of dollars in healthcare costs and lost productivity. 

There is one common denominator among all these unrelenting illnesses: the human brain. Physicians like me who study infectious and neurological diseases know that getting a drug’s active ingredients into the brain is not easy. Unlike biologic drugs, which are usually administered by injection, the only medications that can cross from the bloodstream into the brain are small-molecule drugs.

But big pharmaceutical companies have largely abandoned the development of new small-molecule therapeutics, instead pursuing biologic drugs which tend to be more expensive and profitable. That is because of a complex mix of federal laws granting longer market exclusivity to biologics, patent law changes that remove economic incentives to develop new small-molecule therapeutics, and mounting Food and Drug Administration hurdles.

Yet small-molecule drugs can be highly effective and life-changing, as well as relatively cost-effective to manufacture and distribute. They are our best hope for offering real relief to people struck by cruel conditions rooted in brain function.

As we pick up the pieces from a once-in-a-generation pandemic, we cannot ignore the rise in debilitating post-infectious diseases. In a sense, the people afflicted by these illnesses are living with invisible scars from the infections that preceded their current illnesses. There is an urgent need to help them by restoring incentives for small-molecule drug development and streamlining regulatory processes for new treatments.

The government should be accelerating efforts to expand its support for new drug therapies to address fibromyalgia, CFS/ME, Long COVID, and other illnesses that originate in the brain. The untapped potential of emerging therapeutics is unacceptable, as is the fact that many patients’ symptoms are frequently misinterpreted or dismissed.

It is good news that the Advanced Research Project Agency for Health has been established within NIH to pursue biomedical breakthroughs. But our country could still be doing more on this front. Congress has the power to legislate a more level playing field for small-molecule drug development, correcting decades of bureaucratic bias.

Lawmakers should appropriate more resources to fast-track clinical trials and scale-up delivery of novel therapies for post-infectious diseases. Public-private partnerships could also go a long way towards bridging the gap between treatments that would transform patients’ lives and their current limited options.

We know from our experience with COVID that medical science is capable of swift and significant breakthroughs. Our public health system should be equipped to readily diagnose and effectively treat people with fibromyalgia, CFS/ME, Long COVID, and similar devastating illnesses.

While the symptoms of these diseases are often not visible, our responsibility to provide patients with advanced and effective care is very real. For millions of Americans and their families, the time for better treatments is now.

Seth Lederman, MD, is a physician-scientist and CEO of Tonix Pharmaceuticals, a company developing technologies to treat Long COVID, PTSD, fibromyalgia, and other diseases.

Study Linking Suicides to Rx Opioids Not Supported by Data

By Dr. Stefan Kertesz

Almost everyone has a personal connection to the national overdose crisis that claimed over 107,000 lives last year. Many have also been touched by the rising toll of suicides in the U.S, which took over 47,000 lives in 2021.

Given the pain of those losses, debates over causes and solutions are contentious, especially when they involve the real or speculative role played by prescribed opioids in suicides. In the quest for solutions, researchers and advocates sometimes make recommendations that are not supported by data.

Recently, an article in the American Journal of Psychiatry (AJP) that was widely covered in the lay press, suggested that reductions in the chronic use of prescribed opioids for patients with pain slowed an otherwise discouraging national 20-year rise in suicides. Further, the paper suggests its findings should alleviate concerns about dose reductions in pain patients who have relied on these medicines long term. However, these conclusions were not supported by the data in the study or in any other available data.

Given rising national concern about a burgeoning opioid crisis, many doctors forcibly reduced doses in long-term recipients of prescribed opioids, often under pressure from regulators and boards. Unfortunately, suicides started happening among patients who were taken off their medication.

A series of state- and national-database analyses have documented, retrospectively, elevated rates of mental health crises, suicidal actions or death by suicide among those persons whose doses were reduced, compared to persons not subject to reduction. Because the risk for suicide or suicide attempt remains elevated 1-2 years after the reduction, it has not seemed likely that these tragedies are entirely due to acute withdrawal from opioids. Various authorities have called for caution, as have clinician-researchers like me.

The new article in AJP, from investigators at Columbia University, pushes back. It reports that areas of the country with the biggest declines in opioid prescriptions partly bucked a national trend toward rising suicides.

A few details make it easier to think about what such regional studies can and cannot show. The study relies on suicide data from 2009 to 2017, across 882 “commuting zones” (as devised by the Bureau of Agriculture, areas typically bigger than a county). As mentioned: suicides rose nationally over the study years 2009-2017. Opioid prescriptions dropped from a 2012 peak to the present.

Statistical models tested whether suicide rates rose less in those regions with the greater prescription declines. Of course, regions differ. The study’s models tried to control for that by assigning a single statistical term for each region called a “fixed effect.” The assumption behind a “fixed effect” is the following: As long as the regions differ from each other in “fixed” ways that did not change from 2009-2017, then the models controlled for such differences

This is not a reasonable assumption. We know that regions change in many ways likely to contribute to reductions in opioid prescribing and suicide, without one causing the other. One town might enjoy some economic development, an influx of young families, and new doctors who prescribe less; a decline in suicide might result from all these good things, without the opioid prescriptions having much to do with it. Statistical and graphical analysis could have helped readers learn whether the model’s assumptions were acceptable; but they weren’t presented.

Still, this paper does show that regions with a greater decline in opioid prescriptions (compared to all others) had a smaller rise in total suicides and in opioid-related suicide rates (compared to all others). That regional pattern merits investigation. But there were also exceptions (this pattern wasn’t evident in adults 65 or older). And, for younger persons, unintentional deaths involving opioids seemed to rise most in regions with the greatest prescription declines.

No Justification for Forced Tapering

There would be nothing problematic about this article if all it did was present its data and invite further discussion. The article, however, proposed to address the matter of tapering long-term opioid recipients. The introduction cited two of the studies where suicide risk rose after reduction (including one I co-authored), and attempted to refute them -- an unusual approach for an introduction.

Then, the paper’s discussion argues that it is the patient who receives the prescription who is put at personal risk for suicide, citing a VA paper where opioid doses did correlate with suicide risk. But that discussion omits a much richer Australian study that looked for, and could not find, any association between opioid receipt, or opioid dose, and suicidality.

Buried in the discussion, a caveat was offered, that the results “do not shed light on the clinical pathways connecting local opioid prescribing to individual opioid overdose suicide deaths.”  However, this went unnoticed by many readers. (It was an academic article version of churnalist’s fifth sin: “disclaim and pivot.”)

As a physician-researcher, I care about whether studies are used in ways that misrepresent the risks of curtailing prescriptions in patients with pain. Today, I lead a federally-funded study to examine 110-120 suicides through interviews and record review. We seek to examine them in depth, the way crash-site investigators assess airplane crashes. That’s because we don’t see suicide as simple one-cause affairs.

However, simple stories appeal to reporters. The new paper ignited a storm of inaccurate press coverage, that was seen by many as endorsing the safety of forced opioid reductions, notwithstanding CDC and FDA declarations to the contrary. Speaking to US News and World Report, for example, an associate professor of surgery announced, “for those who have wondered whether curtailing opioid prescriptions could be associated with an increased risk of suicide, this study is reassuring.”

Within days, a widely-quoted, highly-paid expert witness for the plaintiffs in our nation’s ongoing opioid litigation tweeted that the new data “debunk” a “hoax that opioid reduction caused an ‘epidemic’ of suicides” (designation of a suicide “hoax” is not a one-time affair for this expert). 

Of course, no experts had claimed an “epidemic” of suicides. Rather experts and patients observed that tapering can increase the risk for suicide, and were appropriately concerned to avoid that.

Ultimately, reporters repeated the fallacy that regional data can tell us how to care for individual patients. But it was the way the paper was written -- most notably its introduction and discussion -- rather than its data, that drew that interpretation. I suspect that public mockery of suicide risk was not the outcome desired by the authors, given that the final lines of the paper urged caution with opioid dose changes.

Speaking with senior author Dr. Mark Olfson confirmed that sense. He readily offered the following condemnation:

“The results of our recent study indicate that regions of the country that experienced the greatest declines in opioid prescribing also tended to have the greatest declines in regional suicide rates. It would be a mistake, however, to assume that this ecological observation informs the daily clinical management of individuals receiving opioids for chronic pain or refutes clinical research demonstrating risks attending forced opioid tapers.”

Commonsense care of individual patients requires nuance. The best practice is not to force opioid reductions without consent, save when the justification is exceptionally compelling. Even then, the clinician must have a plan to protect the patient from harm, and reverse course if their dose reduction harms the patient.

Individual clinical decisions should not be based on findings from geographic analysis of populations. Clinicians and researchers alike might best avert suicide by seeking a careful understanding of the particular patient, their history, and their context.

Stefan G. Kertesz, MD, is a Professor of Medicine and Public Health at the University of Alabama at Birmingham School of Medicine, and physician-investigator at the Birmingham Alabama Veterans Healthcare System. His views are his own, and do not represent positions of his employers. On Twitter he is at @StefanKertesz. His team’s study can be found here.

This article first appeared in Sensible Medicine on Substack and is republished with permission.

6 Tips for Healthier Living with Chronic Pain

By Barby Ingle, PNN Columnist

People with chronic pain-related medical conditions are at higher risk for infection, falls, poor posture, complications, mental health issues and other challenges. There are things we can do to help lower these risks and live fuller, longer, happier and healthier lives.

Tip #1: Have good communication with your medical providers. Your medical team can include specialists in primary care, pain management, rheumatology, dentistry, ophthalmology, gastroenterology, gynecology, podiatry, surgery, physical therapy and nursing. The more proactive you are in communicating with your providers, the better and faster they can assist you in proper care.

Tip #2: Keep your weight under control. Maintaining an ideal weight as a pain patient can be difficult. You can lose your appetite and not eat enough, or overeat to help deal with the stress of being ill. You may even have cravings for goodies because the pain is so bad. We need something good in our life, right?

Maintaining a good body weight can be very helpful. I use the Noom healthy eating app, gut health testing through Viome, and self-discipline to better control my weight. I watch what I eat and look for healthy treat items that I can enjoy when others around me are having their goodies, helping me to stay social.

Healthy eating needs to be individualized. What is good for me to eat is not always good for others. Find your dietary recommendations and stick to them whenever possible.

Tip #3: Drink plenty of water. I know, I know. Water can be so dull. But drinking the right amount of water increases your energy and helps you focus more. Improved concentration and memory enable you to take on more in life and stay active.

Drinking water can also help you feel fuller and avoid overeating. Water flushes out toxins that we build up from high pain levels, the environment, and other lifestyle choices. Good hydration improves your skin texture, helps it stay elastic and makes you look younger. 

Tip #4: Exercise regularly. I know it’s much easier said than done. Even if you just reduce your sitting and screen time, making the change can help. Know your physical boundaries. For example, if you have a catheter and are not supposed to lift over 10 pounds, don’t do it. Stick to simple household tasks, such as moving the clothes from the washer to the dryer or engage in light sweeping.

During the pandemic, I started doing stretches and light yoga moves while watching TV. Many great exercise shows can be found on television, YouTube and the Internet. Even if you cannot touch your toes like the person in the video can, you can still stretch in that position. Make it a goal to improve your range of motion. Goal setting and a plan of action can help improve vascular flow, blood pressure and other health benefits.

Tip #5: Improve your sleep. A good night’s sleep not only helps reduce pain, it improves your brain performance and mood, and helps lower the risk of heart disease, stroke and obesity. 

Tip #6: Do not smoke or drink to excess. Work to do it less and less each day. I know it’s hard, but I also know it is possible to limit yourself or even quit. 

None of these tips will cure pain. They are tools to help improve your daily living despite your pain. We are told them while growing up, but often life gets in the way and we need a reminder to check our self-care tools and improve the manageable areas of life.

Best wishes in all you do to live a happier, more productive and healthier life! 

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com.   

A Pained Life: I Was a Platypus

By Carol Levy, PNN Columnist

Have you ever seen a platypus? The semiaquatic mammal from Australia that lays eggs and is duck-billed, beaver-tailed and otter-footed?

It’s hard to believe it is actually one animal. In fact, the first European scientists to examine the body of a dead platypus thought it was fake, made from the parts of several different animals that were sewn together.

To many doctors, people in pain are platypuses.

When my first symptoms of trigeminal neuralgia started many decades ago, a patient had to have three specific diagnostic signs.

The pain had to be spontaneous and triggered. Mine was. It had to be in a very specific anatomical area of the face. Mine was. You also had to be over 60 years of age. Or, if you were in your 40's or 50’s, you had to have multiple sclerosis.

I wasn't in my 60's and didn’t have multiple sclerosis. Therefore, because of my youth – I was 26 at the time -- it could not possibly be trigeminal neuralgia. “It looks all the world like trigeminal neuralgia. But it can't be, because you're too young,” one doctor told me.

Two of my symptoms were by the book, but the last one, my age, was like the otter's feet. I was a platypus.

Things have changed a lot over the years, The criteria for a trigeminal neuralgia diagnosis have changed significantly. The pain can have a number of different characteristics and the association with old age was completely wrong. Even toddlers and newborns can have it. Age doesn't matter.

Complex Regional Pain Syndrome and other chronic pain disorders have us presenting many different symptoms to our doctors that, on the face of it, don't make sense. Many of us complain, rightfully so, that the doctor didn't listen when we described our symptoms. Some may fit a specific disease or disorder, while others do not.  

The doctor seemed to listen, but heard only one or two of the symptoms while ignoring others -- the ones that didn't fit their preconceived notion of what we might have. Or didn't fit the textbook description. As a result, we often don’t get the correct diagnoses, and without the right one there is no way to treat the condition or pain correctly. 

When pain became a specialty of its own, when doctors started opening practices solely for those of us living with chronic pain, it seemed like a godsend. We would finally be seen for the singular entity we were -- persons living with pain --- not some platypus that doctors saw as too bizarre to be real. We would be legitimized. 

Unfortunately, since they started taking the “war on opioids” out on the chronic pain community, making us the villains, it seems our legitimacy was lost. 

We are not like patients with other diseases like cancer or diabetes, where the diagnosis is straightforward. We still have to fight to be believed, and to be heard.

It took time for platypuses to be seen as real, more than just an oddity of nature. Let’s hope that someday we will also be believed and accepted. 

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.

More States Should Require Insurers to Pay for Medical Cannabis

By Paul Armentano, Guest Columnist

Should health insurance programs reimburse patients for their use of medical cannabis products? In a growing number of states, the courts are saying “yes.”

In the most recent example, a Pennsylvania Appellate Court ruled that workers’ compensation plans must cover cannabis-related expenditures when an employee uses it to recover from a workplace-related injury. The court ruled that employees in Pennsylvania possess “a statutory right” to be reimbursed for medical marijuana expenses that are reasonable and necessary to treat a work injury.  

“The MMA (Pennsylvania Medical Marijuana Act) specifically mandates that no medical marijuana patients be denied any rights for (the) lawful use of medical marijuana,” the Court said.

The Pennsylvania Court is not the first to issue an affirmative verdict in this matter. Courts in several states, including Connecticut, New Hampshire, New Jersey, New Mexico and New York, have provided similar opinions – determining that the denial of compensation claims would be antithetical to the legislatures’ express findings that cannabis is a state-legal therapy.

By contrast, courts in some other states, including Minnesota, have issued contradictory opinions – finding that it would be inappropriate for insurers to reimburse claimants for their use of a federally illegal substance. Federal law still classifies marijuana as a Schedule I controlled substance, placing it in the same legal category as heroin.

In most states, however, the law is largely silent on the issue. But don’t expect that to be the case for much longer. As scientific consensus and public attitudes surrounding the safety and efficacy of medical cannabis continue to evolve, the way insurers approach patients’ use of marijuana is likely to change too.

For example, lawmakers in Massachusetts recently introduced legislation explicitly providing that injured employees be reimbursed for their medical marijuana-related costs. In New York, lawmakers just advanced legislation, A. 4713, requiring public insurance plans to treat medical cannabis like any other medication. 

Thirty-eight states and the District of Columbia currently regulate the production and dispensing of cannabis for medical purposes. No state government has ever repealed or even rolled back these laws. That’s because these policies are widely accepted among both the public and among health professionals.

In fact, according to nationwide survey data recently compiled by the Centers for Disease Control and Prevention, over two-thirds of practicing physicians acknowledge the efficacy of medical cannabis and over one-quarter say that they have recommended it to their patients. 

Tens of millions of Americans are now using cannabis therapeutically. The number has doubled over the past decade, as peer-reviewed data that support the use of medical cannabis for the treatment of pain, multiple sclerosis, and other ailments has continued to grow. In many instances, patients are replacing their use of opioids, benzodiazepines and other prescription medications with cannabis because they find it more effective and with fewer adverse side effects. 

In short, most patients, most physicians, and most state laws view cannabis as a legitimate therapeutic option. Therefore, the millions of Americans who rely upon medical cannabis products ought to be afforded the same entitlements as those who use other conventional medications and therapies. Those privileges should include insurance-provided reimbursement for medical cannabis treatment.  

State legislators ought to see to it that this is a right provided for and protected in jurisdictions where medical marijuana is legally available under the law. 

Paul Armentano is the Deputy Director for NORML, the National Organization for the Reform of Marijuana Laws.

Why Positivity and Gratitude Beat the Alternative

By Mia Maysack, PNN Columnist

As I write this, I am 33 years old.  And I've lived in pain every day for almost 23 years.

My pain has only gotten more complicated over time, more difficult to deal with and manage. It is intractable, as well as incurable. There have never been treatment options for me that truly worked, only those that temporarily masked the pain or worsened the symptoms and caused irreversible complications.

Those of you who at any point gained access to something that worked or alleviated your discomfort to any extent are privileged. Because some of us have literally not experienced that.

As a 10-year old child whose life was forever changed by a bacterial infection and near death experience, there was no other option for me than to cling desperately to the concept of  "positivity." The only other choice at that point would've been a defeatist, victim mentality:  Why did this happen to me?  I don’t deserve it. My life is ruined. There’s no hope for the future.

I still have those thoughts at times, but I consciously choose not to accept them as the final say or whole picture.  Life hadn't even begun for me when I was stricken, yet I was strong enough to stand firm in my Truth:  I'm not yet ready to die or give up on my quality of life.

As time went on, things got even harder and without any dependable relief. I was often pushed to what felt like my breaking point. It dawned on me that a “positive” attitude was not going to be enough to survive, so my thought process and mindset had to evolve.

Looking at the bright side, being thankful I wasn't dead, and acknowledging that things could have been worse (and might still be) wasn't sufficient to peel my fragmented sense of self off the cold hard floor. So, my focus in life turned to gratitude. 

I became grateful for that cold hard floor, where I could curl up in a fetal position and count my blessings. At least I was still above ground and could find solace in the ability to live on for the sake of other people, so that they wouldn't feel as rejected, alone, forsaken and shunned as I was.

This approach worked, until it didn't.

When even the “attitude of gratitude” didn't suffice, I had to re-examine it and take it all back to basics, recalling things I'd often skip over and take for granted, such as the gift of my senses, the ability to fill my lungs with air, and possessing access to endless knowledge at my fingertips.

Of course, I could never lose sight of the fact that I was incredibly lucky to still be alive, even when it didn’t feel like it.  But these beliefs were undeniable pillars that held me up through times when I couldn't move, think straight, or do anything but stay in bed and cry.

More recently, even this approach was falling short. I was sick and tired, nearing the point of no return. All the motivational tools I cultivated on my own were falling short. What do I do now?  Where do I turn?

These efforts do not come easily and certainly do not represent an absence of intrusive thoughts or negative feelings. Remaining consumed in the darkness has almost cost me everything, on more occasions than I'm able to keep track of. 

But it dawned on me early on that I had a choice. Instead of investing energy in my ailments, I could focus on my response to them. It was a no-brainer to realize that fixating on all that was wrong in my life doesn't improve it or help me feel any better. To choose that kind of suffering is far more toxic and tragic than my pain ever could be.

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.