April 17, 2019

When Will Forced Tapering of Opioids End?

April 17, 2019/ Pat Anson

By Lynn Webster, MD, PNN Columnist

“Larry” recently wrote to me asking for advice. He describes himself as "virtually crippled totally" after having his opioid medication cutback.

"I am being forced tapered and the PA I now have will not budge one inch on the weaning, as he calls it. I hate him. I have never had a more callous doctor in my life," Larry wrote.

"What does one do in my situation? Blow my brains out? A[n] intentional overdose? I have two beautiful dogs that depend on me and a son who needs me. I have to stay here on planet Earth although I want out of here so bad I beg God to kill me every morning noon and night. It is my daily prayer."

Unfortunately, Larry is only one of many patients who are struggling to be heard by their providers. Physicians are under government pressure to adhere to the CDC’s 2016 opioid prescribing guideline.

Although the CDC designed its guideline as voluntary, government agencies interpreted it as a mandate instead. The Drug Enforcement Administration has pursued doctors who prescribe a level of opioids that exceeds the guideline's recommended daily limit of 90 MME (morphine milligram equivalent), even when no patients have been harmed.

According to Maia Szalavitz, writing for Tonic, Dr. Forest Tennant was one of the few physicians who still were willing to prescribe high-dose opioids for the sickest pain patients. The DEA raided his California office and home, allegedly because the agency had reason to believe some of his patients were selling their medication.

There simply was no evidence of that. But as a result of the raid, Dr. Tennant retired from clinical practice.

Szalavitz wrote that the raid "terrifies pain patients and their physicians, who fear that it could lead to de facto prohibition of opioid prescribing for chronic pain and even hamper end-of-life care."

Dr. Mark Ibsen in Montana had his license suspended by the state medical board for allegedly overprescribing opioids. According to Dr. Ibsen, the DEA warned him "he was risking his livelihood and could end up in jail if he kept prescribing." A judge later overturned the board’s decision.

As Dr. James Patrick Murphy, a Kentucky-based pain and addiction specialist, told the Courier-Journal, "many well-intended doctors are unfairly arrested 'all the time' in the hunt for those who recklessly contribute to patients' addictions and fatal overdoses."

As of this writing, The American University Law Journal plans to publish an alarming article by Michael Barnes, JD, about the raids on America’s top physicians.

Although few physicians are incarcerated for prescribing high dosages of opioids, many of them are threatened with losing their licenses to practice medicine. Doctors and pharmacists told a POLITICO survey that they felt enormous pressure to limit their prescriptions for painkillers. Their fear of the consequences of noncompliance with the CDC guideline exceeded their responsibility to treat patients with severe pain.

Second Thoughts About CDC Guideline

On April 1, the attorneys general of 39 states and territories wrote a letter on behalf of the National Association of Attorneys General to Dr. Vanila Singh of the U.S. Department of Health and Human Services. The letter expressed concern with the draft report of the Pain Management Best Practices Inter-Agency Task Force, which recommends changes in the CDC guideline to end the forced tapering of patients.

The attorneys general said "it is incomprehensible that officials would consider moving away from key components of the CDC guideline." Additionally, they expressed their hope that the report would be revised "to clearly state that there is no completely safe opioid dose."

Yet on April 9, the Food and Drug Administration issued a medical alert warning doctors not to abruptly discontinue or rapidly taper patients on opioid medication, because it was causing “serious harm” to patients, including uncontrolled pain, psychological distress and suicides.

Now it seems the CDC may be moving in the same direction.

Dr. Daniel Alford, a Professor of Medicine at Boston University, wrote a letter to the CDC asking it to address the misapplication of its guideline with a "public clarification." He was writing on behalf of Health Professionals for Patients in Pain, and 300 healthcare professionals signed his letter.

The CDC's response, published on April 10, echoed the FDA's statement. CDC Director Dr. Robert Redfield observed that the CDC guideline "offered no support for mandatory opioid dose reductions in patients with long-term pain." He reinforced the fact that the guideline was voluntary and that doctors should use their knowledge of their patients to determine which dosages were appropriate for them.

Dr. Redfield wrote that “CDC is working diligently to evaluate the impact of the Guideline and clarify its recommendations to help reduce unintended harms." And he agreed that "patients suffering from chronic pain deserve safe and effective pain management."

STAT News points out that the overzealous enforcement of the CDC guideline was indeed causing patients harm. "Denying opioids to patients who have relied on them — sometimes for years — may cause some to turn to street drugs, thereby increasing their risk of overdose," STAT warned.

According to The Washington Post, "Many patients have claimed that long-term use of the drugs is all that stands between them and unrelenting pain, and that they can take the medication without becoming dependent or addicted."

The CDC and the FDA now admit the guideline has been misapplied and mainstream media outlets are beginning to pick up the story. The question is: Will the DEA stop pursuing doctors who treat pain patients with levels of opioids that exceed the guideline's recommendations?

For Larry and other pain patients who have been forcibly tapered, the answer may be a matter of life and death.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine and the author of “The Painful Truth.”

You can find Lynn on Twitter: @LynnRWebsterMD.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

April 14, 2019

You're as Healthy as the Food You Eat

April 14, 2019/ Pat Anson

By Barby Ingle, PNN Columnist

It’s important that patients with chronic pain conditions maintain a healthy lifestyle, including getting enough sleep, exercising and eating healthy foods. I know this is so much easier said than done.

You are what you eat, right? We hear this often growing up, but what does it really mean? If I have a cupcake or a slice of cheesecake, am I going to live through the night? Over course I am. But day after day of poor eating will have long-term health consequences. And when our health is poor, other aspects of life are also likely to suffer.

Patients with chronic pain and illness typically lead a more sedentary lifestyle. Because we are less active and burn off fewer calories, we are at greater risk for developing other medical problems such as cardiovascular disease, diabetes and osteoporosis. I myself have been dealing with poor posture and sudden weight gain and loss. I fall easily and have trouble gripping and holding onto things.

One area we have more control over is what we eat and who we are eating with. When I’m at home, my spouse cooks meals for me. I used to just let him choose what he wanted to make because I was just happy to have a meal prepared for me.

I have been really working on my eating habits since being diagnosed as "skinny fat" last year. I had to change where I am eating, how I am eating and what I am eating. Although my husband doesn’t eat the same food as me most of the time, my healthier habits have rubbed off on him.

I make a grocery list for what I want to eat, instead of just eating what he prepares for himself. I also now eat about 6 times a day instead of 3 bigger meals and a snack.

Hopefully those around you are supportive of you making changes in your diet. When they see you make a conscious effort to choose your own meal and set your own portion limits, they may be empowered to pay attention to their own habits. You don’t have to say “no” to everything, just keep indulgences under control, eat smaller portions and be mindful of what you are eating.

As a former athlete, I know nutrition is crucial for good performance outcomes. But when I got sick, I let all of that go. I had more important challenges to focus on, or so I thought.

Nutrition plays a role in chronic pain and how we prepare our bodies to cope with the stress. Make sure your doctor is doing frequent blood testing to check for any deficiencies you may develop. A friend of mine developed Hypokalemia, a potassium deficiency that led to a psychological breakdown and two mental hospital stays.

Medications can also affect your liver, kidneys and digestive system. Blood testing can help prevent this from getting out of control and let you know if dietary supplements are needed to counter poor vitamin absorption.

Maintaining good nutrition and hygiene may be difficult, but are very important. My new reality is that I am disabled and need to ask for help. I have to pay attention to what I eat, my hormones, my vitamins and everything I put on and in my body.

Eating is an important part of our lives and healing is a process. I have to control the parts of my life that I can to be able to live the life that I want.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.

April 09, 2019

An Open Letter to the CDC Center for Injury Prevention

April 09, 2019/ Pat Anson

By Richard “Red” Lawhern, Guest Columnist

Dear Dr. Robert Redfield and Dr. Debra Houry,

By its passive refusal to conduct a thorough review of the impact and outcomes of its 2016 opioid prescribing guideline, the CDC’s National Center for Injury Prevention and Control is actively causing harm to hundreds of thousands of pain patients.

Deserted by their doctors in a hostile regulatory environment, many are going into the streets seeking pain relief. Possibly hundreds may already be dead of illegal fentanyl poisoning or suicide. Military veterans, in particular, face draconian restrictions on the availability of safe and effective opioid medication therapy.

And all for no good reason!

I suggest with every intention of professional and personal courtesy, that government organizations can no longer stand aside from this centrally important issue. Such a stance will make you and other federal agencies accessories to state-sanctioned torture and negligent homicide. That is unacceptable.

As a former military officer, I respect a well-tried motto that I urge each of our regulators to take on as their own:

Lead, follow, or get out of the way!

It has become clear that the CDC guideline must be immediately withdrawn for a major rewrite. In its present form, the guideline is unjustifiably biased against opioid pain relievers, factually incomplete, in error on basic science, and founded on untested assumptions that do not hold up under any degree of careful scrutiny.

The guideline is directly responsible for a vast regulatory over-reach by DEA and state authorities that is driving doctors out of pain management and denying safe and effective pain treatment for hundreds of thousands of patients.

The CDC guideline has been publicly repudiated by no less an authority than the American Medical Association. Over 300 medical professionals have called for a rewrite of the guideline from the ground up. And a recent draft report by a federal task force calls for a reorientation of the guideline towards individualized patient-centered care, not the one-size-fits-all approach of the CDC.

Multiple published papers have conclusively invalidated the guideline’s contention that there is a maximum dose threshold of risk for opioid addiction and overdose.

Likewise, contrary to assertions in the guideline, there are presently no validated long-term studies to support the use of non-opioid analgesics and NSAIDs, or the off-label prescribing of anti-seizure and anti-depressant drugs to treat pain. No Phase II or Phase III trials have been published on "alternative" techniques such as acupuncture, massage or meditation. And there are no trials which directly compare these techniques to opioid therapy under documented protocols. Alternative treatments can at best be regarded as adjuncts to be added to analgesic or anti-inflammatory treatment.

Published papers also demonstrate that criteria used by CDC and other federal agencies to identify risk of opioid abuse or overdose have very limited predictive accuracy. These faulty criteria are now being used by Prescription Drug Monitoring Programs (PDMP’s) to "flag" patients presumed to be at risk, who are in fact not at risk but are being denied pain treatment due to false alarms.

Opioids, Overdoses and Demographics

We can now take this narrative a step further. I have compiled overdose data directly from the CDC Wonder database and from the Agency for Healthcare Research and Quality Data. This data focuses specifically on deaths directly attributable to opioid-related overdoses or suicide. The chart below shows rates of mortality by age group from 1999 to 2017.

Note that the highest rates of opioid-related mortality are among youth and young adults, while the lowest rates are among people over age 55. Moreover, mortality in youth has skyrocketed by 1,800% over 17 years, while remaining relatively stable in people 55 and older.

The chart below documents the contrast in opioid prescribing by age group in 2016. Unsurprisingly, older adults and seniors are much more likely to experience chronic pain and are prescribed opioids at a rate nearly double that of young adults. These two demographic trends contradict the idea that opioid overdoses are linked to prescribing. They’re not and the evidence proves it.

An updated analysis report further summarizes major themes we found in the overdose data. The report reveals that “over-prescribing” of medical opioids was never a significant driver in opioid overdoses. There is no cause-and-effect relationship between rates of opioid prescribing versus rates of opioid overdose. In fact, it can be argued that in states where prescribing rates are highest, the trend may be in the opposite direction.

The downward sloping red line in the chart below is called a "regression" line. This is the trend line for the overdose and prescribing data from all 50 states in 2016. If there were a connection between high rates of opioid prescribing and overdoses, we’d expect the regression line to be pointing upward, not downward.

Overdose mortality rates are actually lower in high-prescribing states!

One plausible explanation for the downward sloping line is that in states where prescribing has been more suppressed, patients are being driven into unsafe street markets or are committing suicide when overwhelmed by pain.

These findings have previously been published in the blog of Dr. Lynn Webster, former President of the American Academy of Pain Medicine and author of "The Painful Truth."

The implications of this analysis are glaring: the National Center for Injury Prevention and Control has created a fatally flawed guideline which actively increases injury rather than reducing it.

Taken in sum, the evidence reveals that key assumptions on which the CDC guideline is based are simply and conclusively wrong. Continued refusal to reevaluate the guideline is morally, ethically, medically and legally wrong. The 2016 CDC guideline on opioids must be retracted. NOW!

(Editor’s note: Dr. Redfield is CDC Director and Dr. Houry is Director of the CDC National Center for Injury Prevention and Control. A longer version of this open letter has been sent by email to other federal agencies and officials.)

Richard “Red” Lawhern, PhD, has for over 20 years volunteered as a patient advocate in online pain communities and a subject matter expert on public policy for medical opioids. Red is co-founder and Director of Research for The Alliance for the Treatment of Intractable Pain.

April 06, 2019

Can Pain Be Used to Treat Pain?

April 06, 2019/ Pat Anson

By Jeanne McArdle, Guest Columnist

“Can you cure pain with more pain?” was the provocative question posed last month by National Public Radio’s Invisibilia podcast, “The Fifth Vital Sign.”

The show features the story of Devyn, a 16-year old former gymnast living with chronic pain. Devyn broke the end of her thighbone and required surgery, but the injury never fully healed and her pain was spreading. She was diagnosed with “amplified pain syndrome” and enrolled in a rehabilitation program for children at a Kansas City hospital that combines intense physical therapy with psychotherapy.

Put simply, Devyn was taught to ignore her pain by being exposed to more of it.

The resounding backlash from the chronic pain and illness community was swift and fierce, blowing up NPR’s social media feeds with charges of endorsing torture and demands to pull the episode. An apology for “triggering” pain patients from podcast hosts Hanna Rosen and Alix Spiegel served only to generate more ire.

NPR’s Public Editor, Elizabeth Jensen, stepped in on March 15, publishing an opinion piece that parsed individual points of contention while somehow missing the main one: Patients were outraged that NPR provided free publicity to treatment programs that put children in tremendous pain on purpose.

The original pain rehabilitation program profiled in the Invisibilia podcast operates out of Children’s Hospital of Philadelphia. It is based on founder Dr. David Sherry’s belief that we do not accept pain as a natural part of life anymore. We focus too much attention on pain and try to eliminate it — often making it worse.

Is there scientific evidence to support the theory that paying too much attention to pain causes it to spread elsewhere in the body? I couldn’t find any. I believe Sherry’s idea is just woo and bunk. Widely accepted pain research shows that once nerves are sensitized it takes less and less stimuli to create more severe and widespread pain. It is important to break that cycle and to treat the pain, before moving forward with physical therapy and other treatments.

Sherry’s program takes the opposite approach. It rests on the unproven idea that flooding the patient with pain will reset her brain’s response to pain. Take away the patient’s pain meds, force her to engage in many hours of hard exercise each day, subject her to other painful stimuli, and her brain will no longer process pain as dangerous. It will become bored with pain.

Would you want someone with such an extreme view of pain to be in charge of your pain management program? Would you want him in charge of your child’s pain management program?

On March 20, the Society for Pediatric Pain Medicine weighed in with an open letter to Cara Tallo, Invisibilia’s Executive Producer:

“(We) are deeply concerned that your episode promotes the misconceptions around pediatric pain and undermines the diligent scientific discovery by scientists, doctors and clinicians over the past several decades.

Pain is NOT simply a matter of attention and psychological state of mind. It does not just respond to putting children in intense/more intense pain and teaching them to push through.

Instead, it requires a clear understanding of its complex nature and treating the physical, biological, and psychological issues carefully and simultaneously, in a delicate dance that sometimes may be harder in the beginning.”

The Invisibilia podcast followed Devyn as she participated in the pain program at Children’s Mercy Hospital in Kansas City, where the goal was “to put Devyn in as much pain as they possibly could.”

Devyn and other patients are told to jump in and out of a pool as fast as they can for five minutes straight. One of the girls struggles to swim and jump in and out because she’s lost the use of one side of her body. She is cut no slack.

During the podcast we hear Devyn’s trainer deny her asthma medication when she has trouble breathing. The trainer tells Devyn to stuff a tissue up her nose and continue to exercise even when she springs a nosebleed. We hear Devyn vomit from exertion. Apparently, exercising to the point of vomiting is common; there are barf bags set up around the gym. Devyn is told to “push through” no matter what.

The girls who enter this rehabilitation program have, we’re told, completed extensive medical testing to rule out underlying medical problems. But people in the pain community know how often diagnoses are missed. It can take years to find a doctor who even knows what to look for. We know how much harm can be inflicted by inappropriate therapy.

The program claims to have precautions in place so that patients with Ehlers-Danlos syndrome (EDS), a condition that causes fragile connective tissue and autonomic dysfunction, don’t injure themselves. Having EDS myself, I know that the essence of this program — pushing people through pain — is inappropriate for anyone with EDS.

I have personally met and have spoken online to other EDS patients who have been through Dr. Sherry’s program and emerged from it with more injuries and pain than they had when they began. There are even reports of people who have come out of his program with PTSD. It is easy to understand how that might happen.

Even if these programs worked some of the time for some people, they are bound to harm others. Pain is complicated. We are only beginning to understand its mechanisms.

Attention is not a switch that can be turned on or off. Attention can take many forms. Attention can be nonjudgmental. It can be loving. It can be kind. It can be curious. It can be gentle. Choosing the proper form of attention to bring to your pain can be a tool for dealing effectively with it. Attention is not the blunt, malign force that the podcast describes.

We have lived through decades-long diagnostic delays while enduring brutal and futile treatments. We have been blamed for our symptoms only to discover they were beyond our control. We know how easy it is to harm, how difficult it is to heal, and how much the larger community wants simple solutions to our complex problems.

The backlash against NPR from the pain community was actually a plea to “First do no harm.” Programs that deny pain have permanently, irreparably harmed countless pain patients and chronically ill people. Don’t present them as solutions. We deserve better and children with widespread pain deserve better.

Jeanne McArdle lives with Ehlers-Danlos syndrome. She administers a regional support group for people with EDS in Central NY and has served on the boards of several nonprofits. Jeanne is a former technical writer and earned an MPS in Communication from Cornell University.

April 02, 2019

Finding Validation at the Migraine Symposium

April 02, 2019/ Pat Anson

By Mia Maysack, PNN Columnist

It was an honor to attend the annual Migraine Symposium and Awards Dinner held by the Association of Migraine Disorders (AMD) this past weekend at Brown University in Providence, Rhode Island.

At the symposium there were more than 25 experts covering topics from breakthroughs in migraine research, emerging technology, holistic treatments, medicinal cannabis and one of the most painful conditions known to mankind: cluster headaches.

As someone who lives with multiple brain diseases and disabling chronic intractable pain, sharing space with migraine community members and healthcare professionals that sincerely care made the occasion extraordinarily meaningful to me.

I was introduced to many exceptional human beings, each of whom I could easily write a column about, but for now I'd like to shine the spotlight on the President of AMD, Dr. Frederick Godley. Not only is he an extraordinarily intelligent and kind soul, his positive attitude illuminated the entire room

Let me share one of the very first moments of validation I'd ever experienced as a person living with migraine and cluster headaches caused by post-bacterial meningitis. Having inquired with many healthcare professionals as to whether or not I am living with a traumatic brain injury (and been disregarded by each and every one), my eyes fill up with tears while rejoicing when I write that although I am not a patient of Dr. Godley or being treated by him, he acknowledged that possibility.

At the end of the day, it doesn't do those of us coping with severe ailments much good to fixate on any specific diagnosis. What's most important is we find a way to manage whatever hand we are dealt. But the validation helps. There have been moments when I've begun to question my own sanity. There's no possible way my head could be hurting *this* bad or for *this* long. Most others are in persistent disbelief as well, even though I crack jokes that if I were to ever wake up pain free, then I must be dead!

I am grateful that I am not and tremendously excited about the future possibilities in migraine treatment. Considering that for about 30 years one of our only options was a small class of medications, now is the best time to get involved in the migraine community because we're moving forward with such momentum. There have been funds granted for much needed further research.

PTSD and Psychedelics

Some other thoughts about the symposium:

The very significant validation that post-traumatic stress disorder (PTSD) is a common underlying element of pain or even a potential cause of it. Think about it. If your own body feels as though it is fighting and turning against you on a daily basis, how are we to live without stress or experience any sense of security?

It's not as common as it should be to go into a doctor's office and be addressed as an entire person. In my experience it has been: “Let's do what we can to mask the symptoms and settle on normalizing what’s left.” That is not treatment. Unacceptable.

The same small class of medications that are one of the only options for people living with ongoing head pain have a similar chemical makeup to Psilocybin, a psychedelic compound found in mushrooms. Psilocybin and LSD are beginning to have more credibility as potential options in treating Trigeminal Autonomic Cephalalgia (TAC) or cluster headaches. There's hope they could be helpful in treating other conditions as well, despite the fact they've got an overall reputation as being hazardous drugs.

Ever come across a rule that just seems absolutely ridiculous? That's kind of how I feel about the current classification of these substances. We all know it only takes one person to essentially ruin things for everyone else. As a result, most people think this kind of stuff only causes harm and chaos. No one is suggesting that anybody should go to their local drug dealer and score a bag of whatever -- we’re discussing potential. It all boils down to the science and our focus here is solely medicinally related.

Much like we've been exploring the use of CBD without THC, we are moving forward with learning more about these other substances -- potentially without the psychedelic or hallucinogen properties. Perhaps they're needed to induce relief. And if that is the case, in what micro-dosage could this possibly be prescribed in a safe, effective way?

Although I am not using them, I've known others who’ve had successful results. In the proper way and for the right reasons, I have also chosen to advocate for them, as there seems to be far less complications with more natural options than those from the pharmaceutical realm. Each approach has its rightful place and there's no one-size-fits-all for everyone.

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

March 30, 2019

What About Pain Patients Who Don’t Get Better?

March 30, 2019/ Pat Anson

By Roger Chriss, PNN Columnist

The standard narrative of the opioid crisis focuses on pain management run amok. From duped doctors drugging patients into dependency to pill mills pumping painkillers into vulnerable communities, the narrative assumes chronic pain is a treatable ill.

“Looking back it’s clear that using opioids to treat chronic pain — backaches, bum knees and the like — might well be considered the worst medical mistake of our era,” wrote Haider Warraich, MD, in a recent opinion piece in The New York Times.

But what about the people who don’t get better?

There is a world of difference between “bum knees” and major diseases and disorders. From ankylosing spondylitis to sickle-cell disease, sometimes the diagnosis is permanent and the clinical course is progressive and degenerative. Care for such conditions is supportive and palliative. Affected people do not get better.

This distinction, between conditions like low back pain that often improve or resolve on their own versus progressive and degenerative conditions like Charcot-Marie-Tooth disease or multiple sclerosis, is often overlooked.

Patients treated with analgesic therapy, opioid or otherwise, are often judged on their level of improvement.

“Despite the limited improvement of clinical outcomes, most patients keep their long-term opioid prescriptions. Our results underscore the need for changes in clinical practice and further research into the effectiveness and safety of chronic opioid therapy,” concludes a study of chronic pain patients recently published Pain Medicine.

Left unsaid is anything specific about the study’s 674 patients’ diagnoses or expected clinical outcome. There was a tacit assumption that the patients should have improved and stopped taking opioids, an expectation that therapy should have been restorative and not just palliative. There is also an implication that non-restorative therapy is somehow inferior and not getting better is in effect a failure.

Often, however, that “failure” is the best that modern medicine can offer. Treatment does not necessarily mean clinical improvement and sometimes it doesn’t even mean halting progression of a disease. Instead, it may be about improving patient safety, such as the use of balance training for people with Meniere’s disease or peripheral neuropathy in the feet, or about improving activities of daily living, such as the use of assistive technology for people with muscular dystrophy or Ehlers-Danlos syndrome.

The list of chronic, progressive and degenerative disorders is long. The very complexity of the human body makes for a vast number of points of failure, from genetic mutations that cause inborn errors of metabolism to immune system dysfunction causing rheumatoid arthritis or lupus. There is the aftermath of chemotherapy, surgery and trauma, too.

MalaCards Human Disease Database has almost 20,000 gene-based disease entries. The National Organization for Rare Disorders includes over 1,000 diseases in its database. Though each condition may be rare, the total number of affected people reaches into the millions in the United States.

A common thread in current coverage of the opioid crisis is that people with chronic pain can and will get better, especially if they stop taking opioids. But a recent study of patients who stopped opioid therapy shows mixed results.

“Half of the former opioid users reported their pain to be better or the same after stopping opioids; however, 47% of the sample reported feeling worse pain since stopping their opioids,” researchers found. “As the pendulum swings from pain control to drug control, we must ensure that the response to the opioid epidemic does not cause harm to individuals with chronic pain.”

There is tendency not to see chronic pain patients as individuals and to lump them all together into one group. This may explain the mixed results in many recent studies on pain management, including on medical cannabis. The patients’ diagnoses and expected clinical outcome are often ignored, which in turn leads to overlooking the value of a therapy that may seem ineffective but is actually helpful.

The reality of long-term pain management for chronic, progressive and degenerative conditions is that there are no great options. It's all trade-offs, risks and benefits, and a careful balancing of medical needs. Sometimes there is little if any improvement. But if you're facing a lifetime of chronic pain, that little bit can still be worth a lot.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

March 29, 2019

Do You Know How To Say No?

March 29, 2019/ Pat Anson

By Ann Marie Gaudon, PNN Columnist

Such a tiny word. Such a powerful one. For toddlers and teenagers, saying “No” comes easily. Then something changes. Some of us as adults would rather stick pins in our eyes than say no to anyone. That’s a problem. An even bigger problem if you suffer from chronic pain

You likely know the drill. Your body is screaming in flared pain -- red flags for rest and self-care. But you don’t say no to your neighbour who needs help with a chore. You don’t say no to babysitting your nieces at the last minute. You don’t say no to that extra job your boss asks you to stay late for.

The inability to say no is directly linked to our need for approval from others. Why do we crave their positive opinion? There are many reasons, but for our purposes let’s just talk about chronic pain patients and some of the reasons we can’t say no.

The consequences of unrelieved pain can include but are not limited to: depression, anxiety, impaired function, financial distress, sleep and appetite disturbances, identity erosion, social isolation, relationship conflict, demoralization, and feelings of helplessness and hopelessness. They can all disconnect you from your family, friends, work and social life.

In a herculean attempt not to relinquish “who we were” before the pain, we don’t say no. Our hearts scream out: “I’m still a son/daughter! I’m still a partner! I’m still a parent! I’m still a good friend! I’m still a valued employee!” We instinctively try to stay in the group in order to survive. We must be accepted and approved at all costs!

What are the personal costs of not saying no?

Anxiety

We only have so much time and energy, and yours is steadily eroded by other people’s demands. You may begin to experience anxiety attacks. Constant worrying and catastrophizing can lead to heart palpitations, sweating, headaches and other physical manifestations.

Depression

Constantly giving in to the demands of others and consistently falling behind in your own life can lead to feelings of low self-esteem, a major contributor to depression. If you spend your time catering to others without focusing on your owns needs, you can lose track of what you want and who you really are. This loss of identity feeds into anxiety and depression.

Relationship Breakdown

In the beginning, saying yes all the time may be appealing to you and to others. But as time goes by hidden resentments may surface or you may feel manipulated.

If you cannot say no, you’re not being honest about your feelings for fear of hurting someone else’s. You may not even be honest about how much pain you are in.

Honesty is a cornerstone of healthy relationships. Saying yes when you truly want to say no isn’t being honest – to yourself or anyone else.

Stress

Too much stress isn’t healthy and can be devastating to pained bodies. It’s exhausting trying to please everyone all of the time. Exhausted bodies are stressed bodies. You’re more likely to experience low grade colds or illness, have trouble sleeping, and feel more pain.

The inability to say no is problematic to your mental and physical well-being. It serves no one – not you or others – to be consistently saying yes when your body says no. You are not being true to yourself or to them.

Others cannot see your pain or understand what your needs are, so they are not given a chance to respect them. It’s really a lose-lose situation.

How does a pain sufferer get themselves out of this unrelenting pattern? Here are four tips I’ve learned:

1. Make Your Pain Visible

If you were in a wheelchair, your disability and limitations would be obvious. But when your pain is invisible, others may need to be educated. It’s time to fess up about what you are capable of and what you are not. Your health demands it.

You’ve likely heard this before: If you don’t take care of yourself first, you will never be able to take care of others. Think of the flight attendant teaching us how to use our oxygen masks in case of emergency. You always put your own mask on first to get the oxygen you’ll need to help others. It’s just like that with pain. When your body says no, it becomes you first.

Some people feel shame in telling others that they suffer from chronic pain. They feel broken or weak and don’t want others to know. This is an erroneous self-belief. It creates an invisible boundary between yourself and the rest of the world.

You = bad, broken. Everyone else = good, whole.

This is emphatically untrue. You are not different from the rest of the world. Everyone suffers in some way, shape or form. It may not be from physical pain, but it will be from something else.

It may not be the easiest conversation you ever have, but it’s one of the most important ones. Some folks provide educational material about their pain condition to help explain how debilitating it can be. You might be pleasantly surprised when you give people a chance to understand. They may embrace you with compassion, respect your limitations and treat you accordingly – just as you would for a loved one.

If you don’t say no and make your pain visible, they’ll never see the authentic you. They only see a façade: You wearing a “yes” mask. Is that fair to either of you?

2. Create Boundaries

When you’re learning how to say no, it’s easy to get caught off guard so be prepared. Sometimes well-meaning loved ones will try to coax or guilt you into doing something you really don’t want to do. Have a narrative ready. It could be something like, “I know I look fine, but my joints are hurting so much it’s getting hard to move. I’m just exhausted and I need your support right now.”

Or perhaps something like: “Sorry, I cannot help with that because I’m in a pain flare today and need to take care of myself. I’d really like to help when I am able to, so next time around, ask me again.”

Boundaries for support from other people need to be firm. If not, you risk no one taking you or your pain seriously.

3. Simplify Your Social Life, But Don’t Abandon It

What about social occasions? How do you handle an impromptu invitation from a friend when your body is telling you to stay put? Living as well as possible with chronic pain is all about constant adaptations.

Perhaps there is something you could attend if someone else did all of the driving?

Maybe you can go to a potluck dinner, but your contribution is store-bought?

Loved ones want to get together for a meal? Dining out is a terrific choice because there’s no cooking or clean up involved.

Can’t keep up with your friends at the gym? Let them run on their treadmills or go to cardio class while you walk around the track. You can all meet up later for a stretch and a green tea.

Family wants to go bowling, which is something you’re not physically capable of? No need to miss out. Let them bowl as you sit and chat with them as they take their turns. You might be pleasantly surprised your inner circle is just happy to have you there and that they’ve come to understand your limits

4. Yes, But…

How do you RSVP to an invitation when you have no idea how you will feel at that time?

How about this: “Thanks, I would love to come but there is a chance that it may be a flared pain day for me. Can I confirm with you the day of, if that’s okay?” This is a regular of mine.

It may turn out to be a low pain day, in which case I’m attending. If it’s a medium pain day, I’ll put my psychotherapy tools to work and go. If it’s a very high pain day, I am staying home.

Framing it this way makes it much easier for me to bow out at the last minute. I do this both socially and with work-related meetings. If I’m not able to make it, we re-book so they know I really do want to attend, I just need to be well enough to do it.

There are some very special and rare occasions where I will say yes even if my body says no, such as a wedding or special birthday event. In that case, I will not book myself for anything or anyone for a couple of days after so that I can fully recover.

Say no when necessary. Simplify and adapt to your needs when necessary. You first. It’s not selfish, it’s self-compassion. Chronic pain patients could all use more of that. Seek help if you need some. Most therapists are well-versed in self-compassion.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management. She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

March 26, 2019

Epidural Steroid Injections Won’t Solve Your Back Pain

March 26, 2019/ Pat Anson

By David Hanscom, MD, PNN Columnist

A lawsuit was in the news recently about a Kentucky doctor who refused to give his patients pain medication unless they had epidural steroid injections.

Really? I have run across this scenario many times throughout my 32 years of performing complex spine surgery. It is a huge problem from several perspectives.

First of all, epidural steroid injections don’t provide lasting relief for any indication. This is particularly true when they are recommended for neck or back pain. There is not any research paper indicating a significant benefit. Yet they continue to be administered at a high rate.

I prescribed them sparingly for acute ruptured discs, where the natural history is for them to resolve without surgery most of the time. The steroids do knock down the inflammatory response that occurs around the disc material, so it buys some time and sanity while the body heals.

I also used them occasionally for spinal stenosis (constriction of the nerves). Pain in the arms and legs would usually improve for a short period of time.

What was unexpected was that many patients that I had on the schedule for surgery would cancel because their pain would disappear when they utilized other tools to calm down the body’s stress hormones. The more favorable hormone levels changed their pain threshold.

Epidural steroid injections as a stand-alone treatment might be of some benefit, but they aren’t going to definitively solve your chronic pain. Whatever benefit that a patient may feel probably comes from the systemic effects of the drug. Steroids make everything feel better, but it’s unfortunate that there are so many severe side effects.

Let me share what happened to one patient.

Ralph was one of my favorite patients. I worked with him for over 20 years. I haven’t met a more well-intentioned human being. By the time I first met him, he had undergone over ten surgeries and was fused from his neck to his pelvis. He never had relief from his chronic back pain. I had to perform a couple of major surgeries just to get him standing up straight.

I worked hard with Ralph on a structured rehab approach with some modest success. I lost track of the number of phone calls. He had a lot of stress at home and was helping to raise a grandchild. In spite of his pain, he kept moving forward.

Then he broke through and had a dramatic decrease in his pain and better function. Ralph wasn’t pain free and his function was permanently limited because his spine was fused. But he was stable on a relatively low dose of opioids. We were both pleased.

I didn’t hear from Ralph for many years until he called me from his local hospital. He was quite ill. His entire spine was severely infected. His primary care physician, who took care of his meds, had retired. No one else would take care of his needs and he was referred to a local pain clinic, which performed a high volume of spinal injections. They would only prescribe opioids if Ralph agreed to the injections.

Not only are injections ineffective for back pain, they really don’t work in the presence of 12 prior surgeries. Ralph’s back was a mass of scar tissue, rods and bone without much of a nerve supply. There is also less blood supply in scar tissue and a much higher chance of infection. Where would you even place a needle if the whole back is fused?

We admitted Ralph and had to open up his whole spine, which was infected with several hundred milliliters of gross pus. It took another two operations to wash him out and get the wound closed. He eventually did well, and we continue to stay in touch.

Ralph had to undergo a proven ineffective procedure in a high-risk setting in order to obtain pain medications that were effective. He became seriously ill, underwent three additional surgeries with the attendant pain and misery, and the cost to society was over a hundred thousand dollars. I rest my case.

Dr. David Hanscom is a spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery.

In his book Back in Control, Hanscom shares the latest developments in neuroscience research and his own personal history with pain.

March 24, 2019

A Pained Life: Accepting the Unacceptable

March 24, 2019/ Pat Anson

By Carol Levy, PNN Columnist

I was recently talking with a friend who has chronic pain and, like me, has had to deal with many bad side effects on top of the pain.

Helene has a facial pain disorder. Unfortunately, as a consequence of her last surgery, she developed problems speaking and swallowing. She has repeated injections to help with her voice, but the swallowing problem Helene says “is permanent."

I can't believe that. “Have you had a third or fourth opinion?” I asked.

“Yes, and a fifth and sixth opinion. There is nothing more to be done,” Helene explained. “But I have adjusted to it and accept it.”

Her last statement felt almost like a punch to my gut. I am happy for her. But truth is, even after 40 years, I do not accept the pain, disabilities and disfigurement the many procedures and surgery have wrought in my life.

It is hard to adjust to change, especially when it affects our natural abilities and body functions. Even harder still when it is the result of medical or surgical mistakes. Or a surgery or treatment that went fine but caused more damage.

Acceptance certainly makes life more bearable. And yet, I have never been able to reach that state.

My pain started in 1976. By now I should be well over having to accept and adjust, but instead I am still angry, frustrated and upset when the pain strikes. When I try to read or write, it exacerbates my eye and facial pain and becomes more then I can bear. The facial paralysis, a side effect of a surgery in 1979, is a hateful reminder of the terrible surgery that caused it.

Children sometimes look at me strangely and stare. I get it. I look different. If I was a child I would also probably look and wonder, “What happened to that lady?”

But It is the adults who feel a need to point me out or comment about me, within earshot, that hurt the most.

My cervical spine was severely injured during one operation. As a result, I have 12 screws and 2 clamps placed in my neck to literally hold it up. When I saw a man look at me, tap his companion's shoulder, point me out and make a slashing motion across his neck -- appearing to indicate to his buddy that I tried to slash my throat -- I wanted to crawl under a table.

Then the question becomes, “How do you adjust?” Or for people like me, “Why haven't you adjusted and accepted?”

As I think about the people I know who have chronic pain, I realize the difference between those who have accepted, adjusted and accommodated versus those of us who have not is a simple one: They have been accepted, and their pain and disabilities have been incorporated not only into their lives, but the lives of those around them. They are believed.

What do those of us who do not have that kind of outside affirmation do? We need to find a way to self-solace, whether it’s by therapy, a support group or meditation. It may seem simplistic, but we are our own best healers. By self-healing we can throw off the hurt and disbelief heaped upon us by others and instead nurture ourselves.

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.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

March 19, 2019

Pain Patient’s Death Was ‘State-Sanctioned Torture’

March 19, 2019/ Pat Anson

By Richard “Red” Lawhern, Guest Columnist

Dawn Anderson was 53 years old and a former registered nurse. Her family has granted permission to share the story of her last days. Dawn’s story is both horrifying and highly representative of many people in pain. These are patients who – in effect, if not from deliberate intent – have died in entirely avoidable agony because of the CDC’s 2016 opioid prescribing guideline.

Dawn was diabetic. She also suffered from kidney disease. She had lost both legs and one eye, resulting in severe pain for many years, which until recently was managed with opioid pain relievers. Her pain management physician – Dr. Paul Madison -- is no longer practicing medicine. Madison was recently convicted of healthcare fraud and awaits sentencing for billing insurance companies $3.5 million for services he didn’t deliver. Madison reportedly had “pill mills” in 11 states, from which he dispensed very high volumes of opioids.

When Dr. Madison was barred from further treating patients, Dawn sought help from multiple pain management doctors in her area. She found that many were no longer accepting new patients. Among the few who would see her, none would treat her with opioids at the dose levels that had been effective for her in the past. Several were transitioning their patients to addiction treatment with Suboxone or recommending steroid shots.

Dawn’s most recent pain management doctor refused to prescribe above 90 morphine milligram equivalents (MME) per day, citing the CDC guideline as a de facto maximum allowable dose level.

Like many patients with chronic pain, Dawn’s medical situation was complex and involved several interacting medical disorders and issues. She had a history of MRSA – a highly aggressive antibiotic-resistant staph infection. Dawn had also personally observed many patients in whom spinal injections had led to worsening pain. She refused both Suboxone and the steroid shots

On March 4, 2019, a family friend spoke with Dawn. She was very tired and not feeling well. Her husband was calling from work throughout the day. When she did not answer, he called the police department and asked for a wellness check. When police arrived, they found Dawn had fallen out of her wheelchair and was unconscious on her living room floor. She was transported to a hospital. When she regained consciousness, she was very confused.

Hospital physicians determined Dawn had a severe urinary tract infection and her kidneys were failing. She was admitted to ICU and a doctor ordered a dialysis tube. Staff also forcibly started her on Thorazine injections, as she was refusing dialysis. They asserted that she was mentally incompetent. Family members observed that she was covered in bruises due to the force used when pinning her down to administer the injections.

On March 10th, Dawn was moved from intensive care to a regular hospital room. Her daughter called a family friend so that Dawn could talk to someone she liked and trusted. The conversation was very difficult. The friend asked why Dawn was refusing dialysis. Dawn replied, “I just can't take it anymore.” She anticipated having new issues with the dialysis, but most important was her unbearable pain. Hospital staff had again refused to provide adequate treatment with opioid pain relievers.

Both Dawn and her friend were in tears, but Dawn was adamant: “Honey, I love you, but I can’t suffer any more. The pain is unbearable and I just can’t fight any more. If you keep begging me to, I will hang up.”

Dawn’s friend and her family had talked with her about entering hospice care, where she would at least be treated for her pain. She was released from the hospital that day to go home. Her friend spoke with Dawn an hour later. She was tired, but had at last been placed on comfort care.

Dawn died a day later, on March 11, 2019.

What can we learn from this deeply disturbing narrative? Would Dawn have lived longer if she had been treated adequately with opioid pain relievers? That is impossible to say with confidence. But what is clear is that this woman died in needless agony. Dawn should never have been forced to see a pill mill doctor in the first place. And she should never have been forced to taper from effective dose levels because legitimate doctors were intimidated by CDC and state regulators into refusing effective — and largely safe — opioid therapy.

By any other name, this was state-sanctioned torture.

It is not accidental that the American Medical Association recently repudiated the CDC guideline. But the government dinosaur’s bureaucratic brain is in its tail and it hasn’t gotten the message yet. CDC has merely doubled down on the mythology that doctor over-prescribing caused our “opioid crisis.” They are running away from their own overdose data, which demonstrates the falsity of their assertion.

There is very little relationship between physician prescribing and either opioid addiction or overdose deaths. But the only metric CDC seems willing to use to measure the success of the war against drugs is reduced prescribing to Dawn Anderson and other people in pain.

It is time for this madness to stop! Opioid prescribing guidelines need to be taken away from the CDC and rewritten from the ground up by more competent agencies or by professional groups within medicine itself. And this time, multiple patient advocates need to be voting members of the writers’ group.

March 13, 2019

The Complexity of Rx Opioid Misuse

March 13, 2019/ Pat Anson

By Roger Chriss, PNN Columnist

The misuse of prescription opioids is a complex phenomenon. Recent research has found that non-medical opioid use almost always involves a variety of other substances -- not just exposure in the course of routine medical care.

The risks of non-medical prescription opioid use developing into addiction need to be better understood to develop more effective measures to prevent misuse and to ensure that patients who use opioids responsibly are not wrongly targeted.

A new study in The American Journal on Addictions looked closely at the 2016 National Survey on Drug Use and Health, which found that that about 2.5% of respondents had misused prescription opioids in the previous 30 days. Almost half (43.9%) obtained opioid analgesics from a friend or relative for free and most were using other substances, such as cigarettes, alcohol, marijuana or street drugs.

“So much of the public discussion focuses on the opioid epidemic as though it is happening in a vacuum when, in fact, so many people misusing prescription opioids are also engaging in other substance use,” says lead author Timothy Grigsby, PhD, an assistant professor at The University of Texas at San Antonio.

“If we want to end the opioid epidemic, and stop another similar one from taking its place, then we need to consider the entire clinical picture of the patient including their use of other substances.”

Grigsby and his colleagues found that prescription opioid and polydrug users were also more likely to engage in stealing, selling drugs, have suicidal thoughts, suffer from major depression and need substance use treatment.

A similar study recently published in the journal Pediatrics examined non-medical prescription opioid use by parents and teenagers. The study found that parental misuse of opioid analgesics was associated with teenagers doing the same, with mothers’ use having a stronger association than fathers’ use.

Parental smoking, low parental monitoring and parent-adolescent conflict were also associated with teenage prescription opioid misuse, as were adolescent smoking, marijuana use, depression, delinquency and schoolmates’ drug use.

Despite what you may have heard, non-medical prescription opioid use does not usually lead to heroin. The National Institute on Drug Abuse reports that only 4 to 6 percent of people who misuse prescription opioids transition to heroin.

But trends in this transition have been shifting. A new study in PLOS One found that people who injected illicit drugs who were born after 1980 were more likely to initiate drug use with prescription opioids and non-opioids, and had higher levels of polydrug use. This study was limited to Baltimore, but similar findings have been reported for other parts of the U.S.

Importantly, most non-medical prescription opioid use occurs in the context of more general substance use. U.S. News recently reported that most patients treated in emergency rooms for misuse of prescription medications get into trouble because they mixed different substances.

"Most of the time there may have been only one pharmaceutical involved, but there were other non-pharmaceutical substances or psychoactive drugs or alcohol involved as well. When people get into trouble with misusing medicines, they're usually taking more than one substance," Dr. Andrew Geller of the CDC told U.S. News.

This is a long-standing trend in the opioid crisis. The 2014 Overdose Fatality Report in Kentucky found that the top five drugs in drug-related deaths were morphine, cannabis, heroin, alcohol and alprazolam (Xanax), with more than one drug present in many overdoses.

Moreover, a new study in the Journal of Substance Abuse Treatment compared 2013 and 2017 data on patients seeking opioid addiction treatment. Researchers found that many patients had employment, psychiatric, alcohol and drug problems, and were more likely to have depression, anxiety, hallucinations and suicidal thoughts. In other words, the overdose crisis is far more complex and dangerous than just opioids alone.

Fortunately, these long-standing trends are now starting to be appreciated. Public and private health officials in Ohio have started looking at data from multiple sources to better address mental health and substance abuse.

The overdose crisis is a fast-moving target that is rapidly evolving. Overdoses now more than ever involve multiple drugs, and may not even occur among people who use opioids non-medically or people who have a substance use disorder. Understanding these features of the crisis is essential for developing better responses.

March 09, 2019

My Daily Persistent Headache

March 09, 2019/ Pat Anson

By Warren Cereghino, Guest Columnist

Waking up from my pre-work noontime nap one October day in 2007, I had a headache. I still have it.

Thinking little of it at the time, I took two acetaminophen capsules (maybe Tylenol; maybe the generic from CVS or Costco) and headed off to work.

I toiled nightly in a Los Angeles television station’s news department, where I was a news editor contributing to the nightly 10pm newscast. I liked the work and didn’t mind the night schedule because it kept me out of mischief and off the streets.

That first night, the headache persisted. And it just never stopped. Over the next few weeks, I was gobbling pain relievers of one form or another every four hours, all the while trying to find the cause and a cure with all sorts of practitioners.

A little research taught me that this was known as “New Daily Persistent Headache.” It sure as hell was persistent.

My journey took me to the offices of two different chiropractors who had successfully treated the persistent headaches of two referring friends (one was my daughter-in-law, who is a RN). Both doctors tried, and both were unable to make it go away.

Next, I tried acupuncture. That didn’t work, either.

Meanwhile, I kept gobbling acetaminophen and ibuprofen like they were candy. Determined to find the cause, I turned to neurologists. Two doctors who were with separate practices in Santa Monica evaluated me, had me undergo a scan and tried to figure it out, but to no avail.

By year’s end, I was still struggling with the debilitating effects of the headache and despairing of ever finding the elusive cause and cure. I had to face the fact that the only avenue open to me appeared to be pain management.

In January 2008, I went to see David Kudrow, MD, whose neurology practice in Santa Monica specializes in pain management. He treats patients and conducts research. Dr. Kudrow gave me a thorough interview and then prescribed a nightly dose of 10mg of Elavil, an anti-depressant.

I cannot remember what he predicted in regard to when it would take effect, but a few weeks later I encountered a young man who’d grown up across the street from me and was now a practicing pediatric neurosurgeon. He said he agreed with the prescription and told me it would take about a month to take effect. He was right.

Over the years, the dosage of Elavil (or its generic amitriptyline) has had to be increased, first from 10mg nightly and then to 20mg. A couple of years ago Dr. Kudrow bumped it up again to 30mg nightly.

Recently he suggested I try to scale back to 20mg nightly. I tried, but it didn’t work. The 20mg dosage didn’t offer enough pharmacological firepower and I went back to 30mg after about ten days.

Dr. Kudrow saved my life. I have other health issues, but without his help in pain management I wouldn’t even be able to address the other issues of hypertension, diabetes and pre-clinical heart disease. I’m two months shy of turning 82 as of this writing. Without Elavil, I would be dead.

Warren Cereghino is a retired TV news producer, writer and editor who spent 55 years at TV stations in Phoenix, Sacramento, San Francisco-Oakland and Los Angeles. Warren is a graduate of Arizona State and a military veteran who served during the Berlin Crisis of 1961.

March 06, 2019

My Constant Daily Companion

March 06, 2019/ Pat Anson

By Mia Maysack, PNN Columnist

I've got a companion everywhere I go. The wants and needs of this little bugger consistently require that I prioritize it before myself. It tests my boundaries, my patience, as well as my sanity.

I cannot eat, sleep or even use the restroom uninterrupted. This results in a consistent flow of tailored accommodations to make life easier for all involved. Temper tantrums are not only a daily occurrence, but a humble reminder that I am operating on a clock outside of my control.

I'm not discussing a child. I am referring to my chronic illness.

Migraines and my other ailments wake me up throughout the night, demanding attention. We all know how this works. No one gets any rest until the situation settles down. Pain is a constant companion who must be catered to.

Today, for example, I woke up to what felt like a pitchfork making its way through my cheek and out through my left eyeball. Grabbing my face out of reflex -- as if somehow that'll ease the discomfort -- I rocked myself back and forth until the severity lessened.

My entire body still feels the aftershock of that attack, but it's only the first of many that'll transpire throughout the day. I know enough to recognize this as a warning. My brain injury is now triggered, turning an everyday 5/6 on the migraine scale into a solid 8/9.

The impact on my physical body is severe due to the heightened sensitivity of my nerves. Getting up from a sitting position gets harder by the day. At times it is not possible for me to stand up straight or navigate stairs. Sometimes I can barely walk.

There is overwhelming nausea to the point that even breathing seems to aggravate it, so no food or drink remains inside. This causes further complications, as malnourishment and dehydration only worsen things. The dizziness gets so severe it hinders my eyesight.

Despite the fact I am on no drugs whatsoever, I feel “out of it” to the point that all I can do is write because I'm unable to verbally speak.

If you're so sick, how can you type? Lowest brightness. Special glasses. I document this so the world can understand and because I am currently on bed rest.

It doesn't take long for the darkness to creep in, with special guests anxiety, grief, stress and panic. Despite how much it hurts, keeping my mind busy is imperative. So I write.

What I'd really love to do is rest, but it hurts to close my eyes. And even though quality sleep is what my body needs most, it further heightens my head pain. In other words, the self-care that has been my saving grace actually worsens things.

I'm not a violent person, but if someone suggested a Tylenol or something like it, I'd have to fight the urge to use my last ounce of energy to punch them in the face.

No work was done today, meetings were cancelled, my dog didn't get a walk and I am barricaded in a blacked-out room. Another rescheduled dinner date with the girls, unable to answer phone calls or messages, couldn't run errands or get any chores done. The world continues to spin without me.

Missing out on life and feeling the weight of disappoint is a crippling side effect of all these symptoms. With broken hearts we mourn the lives we've lived and who we once were.

I have always been the one to take care of everybody -- the nanny, teacher, nurse. Now I struggle just to keep up with what's going on internally. As if that’s not difficult enough, we have to fight to be taken seriously or even believed. That is unacceptable.

March 04, 2019

A Recap of Rare Disease Week on Capitol Hill

March 04, 2019/ Pat Anson

By Barby Ingle, PNN Columnist

Last week was Rare Disease Week on Capitol Hill, and I was excited to join hundreds of patients, advocates and caregivers in Washington, DC to raise awareness about rare diseases.

I was once again chosen as the Arizona “team leader” by the EveryLife Foundation, and led our group in meetings with our Senators and Representatives. I handled logistics for the legislative conference, helped organize the strategy for the meetings and kept the group on task during our discussions.

The EveryLife Foundation is a science-based advocacy organization that works to bring lifesaving treatments to 30 million Americans with rare diseases. There are more than 7,000 rare diseases. The foundation’s focus is on educating and advocating for rare disease patients to ensure they are heard by policy makers in government and by healthcare organizations.

The week kicked off on Sunday with a cocktail reception and Rare Disease documentary screening at the Ronald Reagan Building. We spent Monday at a legislative conference, where we heard from industry lobbyists about important federal bills and learned how the National Institutes of Health (NIH) is researching new treatments for rare diseases.

On Tuesday we split up and went to scheduled meetings with our members of the House and Senate on Capitol Hill. This day of lobbying was for patients, caregivers, and patient advocacy groups only.

Patient and fellow advocate Mike Heil joined me and my husband Ken as we visited the offices of Sen. Kyrsten Sinema (D-AZ), Sen. Martha McSally (R-AZ) and Rep. Paul Gosar (R-AZ).

One of my favorite parts of the week was Wednesday, when there was a briefing by the Rare Disease Congressional Caucus at the Dirksen Senate Office Building. The caucus is a bipartisan group of over 100 senators and representatives that meets to pursue common legislative objectives to help rare disease patients. You don’t hear much about bipartisanship these days on Capitol Hill, but this group has been active since 2010.

The caucus meeting was followed by a reception that featured a collection of art from across the rare disease community. This event was designed to help educate Congress about rare diseases and to empower patients to express their pain through artwork.

Thursday was full of action as we gathered at the NIH headquarters in Bethesda, MD to mark the global observance of Rare Disease Day. The day featured multiple interactive panel discussions on rare disease research, patient registries and cancer research initiatives, with the theme being "no disease left behind, no patient left behind."

Other highlights included posters and exhibits by rare disease groups and researchers as well as artwork, videos and campus tours. Global Genes participants were encouraged to wear their favorite pair of jeans and to use the social media tag, #RDDNIH to help raise awareness.

This was my second time participating in Rare Disease Week on Capitol Hill. I hope you join me in person or online next year for Rare Disease Week 2020. For more information on the next event, visit the website of Rare Disease Legislative Advocates (RDLA).

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

March 02, 2019

How Has CDC Opioid Guideline Affected You?

March 02, 2019/ Pat Anson

By Lynn Webster, MD, PNN Colomunist

The controversial CDC Guideline for Prescribing Opioids for Chronic Pain was released on March 15, 2016 in an effort to curb the opioid crisis. While “largely supportive” of the guideline at the time, the American Medical Association had concerns about how it would be implemented.

“We remain concerned about the evidence base informing some of the recommendations; conflicts with existing state laws and product labeling; and possible unintended consequences associated with implementation, which includes access and insurance coverage limitations for non-pharmacologic treatments, especially comprehensive care; and the potential effects of strict dosage and duration limits on patient care,” said Patrice Harris, MD, then board chair-elect of the AMA.

Dr. Harris proved to be prescient. In the last three years, insurance companies, healthcare systems and dozens of states have imposed limits – based on the CDC guideline -- on the quantity and dose of opioids dispensed to people with pain.

Oregon has even drafted a plan to stop opioid prescribing for many Medicaid patients and require that they use alternative treatments. Here was my response to Oregon's plan, in which I warned that “forcing opioid tapers is not an appropriate or compassionate solution” and could drive some patients to suicide.

Pharmacies are also imposing limits. In 2017, CVS announced it would limit the number of pills for new patients with acute pain to 7 days’ supply, saying “the CDC Guideline should become the default approach to prescribing opiates.”

That same year, the giant prescription benefits manager Express Scripts also started limiting new opioid prescriptions and set a dosage limit “based on CDC prescribing guidelines.”

This January, the Centers for Medicare and Medicaid Services made it more difficult for over a million Medicare patients to receive doses above 90 MME (morphine milligram equivalent) which they consider a high dose. CMS also imposed a seven-day limit on all patients receiving a new opioid prescription. The CMS rules are based on evidence “cited in the CDC Guideline.”

‘Revisit This Guideline’

When it first published its recommendations, CDC pledged to “revisit this guideline as new evidence becomes available” and said it was “committed to evaluating the guideline to identify the impact of the recommendations on clinician and patient outcomes, both intended and unintended, and revising the recommendations in future updates when warranted.”

In a recent statement to PNN, the CDC said there are “several studies underway with external researchers” evaluating the impact of its guideline on opioid prescribing and patient outcomes. The agency also said it recently commissioned a review by Agency for Healthcare Research & Quality (AHRQ) “to determine what new scientific evidence has been released” on the effectiveness of opioid and non-opioid pain relievers.

In the meantime, no revision of the guideline is being planned.

The CDC guideline was well-intentioned and included many wise principles of opioid prescribing. But it appears to be more about limiting the supply of opioids than improving clinical care for pain patients. Limiting opioid access may be good for some patients, but for many it means more pain and a worsened quality of life.

There is little evidence that limiting supply reduces opioid addiction and overdoses. Opioid prescribing in the United States has significantly declined since 2012, yet opioid overdoses continue rising – primarily due to illicit fentanyl, heroin and counterfeit drugs, not prescription opioids. The CDC's reevaluation of the guideline should take this into consideration.

In 2018, the National Institutes of Health’s Interagency Pain Research Coordinating Committee recommended that the CDC "engage with advocates and patients, who have been negatively impacted by the unintended consequences of the CDC guideline." It also called on the FDA and the CDC to work together to "update and improve" the guideline.

Rather than seeing the CDC guideline as a resource or helpful tool, many prescribers live in fear of it. The DEA now routinely monitors prescription drug databases, looking for “red flags” that indicate a doctor is prescribing opioids at doses above those recommended by the CDC. The AMA last year took a stand against this “inappropriate use” of the guideline, and passed a resolution stating that doctors should not be subject to criminal prosecution or other penalties solely for prescribing opioids at higher dosages.