Are You Mad as Hell Yet?

By Fred Brown, Guest Columnist

I experienced in mid-life something that I wish on no one. Because of this event, I live with a disease called chronic pain.  I am considered a “pain patient” by the medical community, but I try not to see myself as such. I am a human being, living my life to the best of my ability.

I had several surgeries to fix a problem in my spine.  These procedures not only failed to fix the problem, they left me with severe and chronic intractable pain.

There is a way to relieve my pain and make me more functional, and it has been part of my life for over two decades: Opioid pain medication prescribed by a board-certified pain management physician.

Opioids give me quality of life and let me be a spouse, father, grandfather and great-grandfather.

The problem I have is that there are people in state and federal agencies, along with legislators in our government, who think they know better than my trained doctor. These officials make claims without any science to back them up. They don’t want me to take opioids or say I should only use them at very low doses that do not work.

FRED BROWN

FRED BROWN

There are millions of legitimate chronic pain patients like me who need these drugs. They are essentially being told, “Sorry, we do not want your physician to treat you the way they know best. And if you don’t do what we think is best for you, we can do nasty things to you and your doctor.”

These officials can use state and federal powers to take away your physician’s license to practice medicine. And if that is not enough, they can even put them in jail.  The government is persecuting doctors for legitimately prescribing opioids for chronic pain.

There is strong evidence -- using our own government's information -- to prove physicians have not caused the crisis. The writing of opioid prescriptions has been coming down for several years. What has been increasing are patients turning to street drugs or, even worse. committing suicide. They are not able to obtain relief the right way, so they go to the streets!

There has been so much disinformation about opioid medication that our media has distributed to the public.   Over and over, we hear that physicians have overprescribed opioids and caused the “opioid crisis.”

Over 40 years ago, there was a motion picture made called “Network.”  In the movie, there is a fantastic scene where an anchorman named Howard Beale becomes so frustrated and angry during a show that he shouts over and over, “I’m as mad as hell, and I’m not going to take this anymore!”

Then he encourages Americans across the country to open their windows and do the same. Millions do.

To my fellow patients, advocates, friends, doctors and other healthcare workers. It is time to write, call and communicate with your Senator and Congressmen.

Like Howard Beale, tell them you’re mad as hell and you’re not going to take it anymore.   

bigstock-Tell-Us-Your-Story-card-with-c-78557009.jpg

Fred Brown lives with degenerative disc disease, bone spurs, stenosis and other spinal problems. He is a patient advocate and volunteer with The Alliance for the Treatment of Intractable Pain (ATIP). 

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

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.

Are Rx Opioids Scapegoats for the Opioid Crisis?

By Dr. Lynn Webster, PNN Columnist

The Washington Post recently published a series of stories about the volume of opioid medication distributed over the past several years in the United States. Over 76 billion pills were distributed from 2002 through 2012.

That sounds like a huge amount, but it is difficult to know what the number means. What is clear is that the stories are meant to suggest the number of pills is excessive and responsible for the rise in opioid overdose deaths. 

This presumed correlation is one reason for the recent lawsuits that have been filed against opioid manufacturers and distributors. It has also spawned policies that appear to have worsened, not prevented, overdoses.

Though the situation has been framed largely as a prescribing problem, the reasons for the drug crisis are many. While overprescribing has certainly been a factor, it is probably less important than other factors, such as joblessness, homelessness and despair, which are more challenging to address.

Let’s look at the data about the relationship between opioid prescriptions and overdose death rates. The number of opioid prescriptions in the United States peaked in 2012 and began a steady decline. By 2017, they reached a 15-year low.

bigstock--200145217.jpg

Despite the decline in the number of opioids prescribed, overdoses from all opioids – both legal and illegal -- continued to increase. Overdoses involving prescription opioids represent only about 25% of the total number of drug overdoses.  

Obviously, something more than the supply of prescription opioids is driving overdoses higher.

No Correlation Between Opioid Prescriptions and Overdoses

After winning a year-long court battle with the Justice Department, the Post and HD Media, publisher of the Charleston Gazette-Mail in West Virginia, were able to access data from the DEA’s Automation of Reports and Consolidated Orders System (ARCOS).

The information in the database shows that, between 2006 and 2012, West Virginia received the largest per capita amount of prescription opioids. The state also experienced the highest opioid-related death rate during that period. Is there a correlation?

Kentucky also had a high number of pills and a high death rate, but as Jacob Sullum recently reported in Reason, Kentucky’s death rate in 2017 was actually lower than Maryland’s and Utah’s, where prescription rates are substantially lower. He also pointed out that although Oregon’s prescription rate was among the highest in the country, the rate of deaths involving pain pills in Oregon was just 3.5 per 100,000, lower than the rates in most states. 

Sullum further showed that Kentucky, Nevada, Oklahoma, Oregon, South Carolina and Tennessee were among the 10 states with the highest per capita prescribed pills during the 2006-2012 period. But they were not the states with the highest overdose rates. 

In a separate analysis, the CDC and Agency for Healthcare Research Quality found no correlation -- not even a weak one -- between opioid prescribing rates and overdoses when comparing data from each state. 

In addition, the rate of opioid prescribing is highest nationally for people 55 years and older, but that age group has the lowest rate.  

This lack of correlation between opioid overdoses and the volume of prescribed opioids is consistent internationally. In 2016, England prescribed the most opioids and saw the most overdose deaths in its history. However, the drug responsible for many of those deaths was heroin, not prescription opioids. 

There is a raging opioid crisis in West Africa where, despite a low prescription rate, the number of overdoses has surged

In 2018, Scotland's drug overdose rate exceeded that of the United States -- largely because of heroin. There is no evidence of an overall increase in opioid prescribing in Scotland. 

No Simple Answers to the Opioid Crisis

It is clear that the data does not support a simple answer to the opioid crisis. Focusing all of our efforts on decreasing the supply of prescriptions will not solve the problem and is already creating unintended consequences.

In fact, cocaine and methamphetamine were involved in more overdose deaths in the U.S. in 2018 than prescription opioids. As the supply of prescription opioids has decreased due to the policies of the last few years, people have moved from prescription opioids to other illicit drugs.

The solution to the opioid crisis must be multi-pronged. Overprescribing played a role in causing the crisis, but sociological factors appear to have driven the demand. We must consider what prompts people to turn to drugs in despair. A recent study published in SSM-Population shows job loss bears a significant correlation to opioid-caused deaths.

In addition, in the Proceedings of the National Academy of Sciences, Princeton University economists Anne Case and Angus Deaton (recipient of the 2015 Nobel prize in economics) showed mortality from substance use was linked to declining economic opportunity and financial insecurity.

Solving the drug crisis will not be easy. However, the disenfranchised members of our most impoverished communities deserve viable solutions to their problems. It is crucial to understand the degree to which job loss and hopelessness contribute to the drug problem.

Reputable data proves that the volume of opioids prescribed is not solely, or even primarily, responsible for the opioid crisis. Let’s focus on what is responsible.

_DSC8561.jpg

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth” and co-producer of the documentary, “It Hurts Until You Die.”

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.

Advocating for Your Disabled Child at Public Schools

By Barby Ingle, PNN Columnist

With school starting in the coming weeks, I have been thinking about the special assistance I recieved as a child and how hard my mom and family had to fight for the help I needed. As a child, I was diagnosed with a severe learning disability and had to take special education classes through middle school and have special provisions and testing in high school and college.

According to the U.S. Department of Education, about 5.5 million children with disabilities receive special education and related services, and are protected through the Individuals with Disabilities Act (IDEA). Some kids with special needs do not qualify under IDEA, but are served under Section 504 of the Rehabilitation Act of 1973.

If you are a parent with a disabled child, you may need to inform school administrators that IDEA and the Americans With Disabilities Act (ADA) establish a legal premise that ensures that children with invisible disabilities are afforded the same rights and access to services as children with other disabilities.

Being a part of this system has given me some insight as to how it works. For instance, my parents had to fight for my right to special education teachers and sessions. It should have been much easier for me to get that assistance, but in the 1970’s schools often didn’t want to help.

children-306607_640.jpg

Federal law prohibits discrimination based upon disability. I eventually got the care I needed, but had to switch from private school to a public school, and my parents had to file and win a lawsuit for the special needs program to start at my elementary school. Their activism not only helped me, but all of the disabled kids that also needed assistance.

What Section 504 Requires

Section 504 is now commonly used across the country for children with learning disabilities, but I still hear of cases where a child has a chronic illness and their parents have to fight for access to a special needs program.

Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled. It’s purpose is to give children the tools they need to prepare them to be adults who can participate in society through employment and independent living.

A child with a pain disease, disorder, syndrome or condition is protected under Section 504 if they have a physical or mental impairment that substantially limits one or more major life activities. Special assistance should be individualized to your child’s specific needs. This includes deciding how many days they go to special sessions, if they are in the main classroom full-time or part-time, if they get to take their tests in private rooms or have someone read to them the questions, and being allowed to respond verbally if writing is difficult for them.

Many children with chronic pain match the legal definition of a disability, which qualifies them to be protected by federal laws in school and in society as a whole. Even though the pain can’t be seen by others and is subjective, these kids are protected under the law.

How to Help Your Child

A child with chronic pain or an invisible disabling illness will experience physical, social and emotional challenges. You can help educate administrators, teachers and classroom aides about your child’s condition by giving them a list of symptoms and special needs. Be sure to include invisible symptoms and how the child learns best. For instance, they may need a quiet area where the lights are lowered during testing to help them concentrate. Or a child may need to wear sunglasses if they experience migraines.

A parent can also list their child’s strengths, aspirations, likes and dislikes. You should be prepared with medical documentation to educate staff about your child’s conditions and be prepared to appeal decisions made by the school if they are not providing what it takes to assist your child.

Know which kind of special accommodations are needed and should be available. Does your child need adjusted class schedules or grading, behavior management support, extended time on tests and assignments, modified textbooks or audio-video materials, reduced homework or classwork, verbal or visual testing, or technology aids?

Some children may also need help making the transition between homeschooling, special classes and regular classes. It is your responsibility as a parent to stay on top of this and keeping all involved in the loop. Remember, you are the voice of your child and can speak up at any time throughout the year.

Unlike when I was a child who started in private school and had to switch to public schools to get the assistance I needed, today students with disabilities who attend charter schools have the same Section 504 rights as those who attend public schools.

My final tip is to keep a positive attitude when facing challenges and use your right to appeal school decisions when appropriate. Keep track of your child’s progress and advocate for additional services or changes when needed. These needs may change over time. I needed more assistance and help up until 9th grade, and as I learned and grew my plan changed.

From kindergarten through college, keep an eye out for when changes are needed or when services need to upgrade or downgrade, and whether something your child needs is being neglected. For more information and assistance, contact the National Education Association.

Barby Ingle.jpg

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 FoundationShe is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.  

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.

A Survey for Canadian Pain Patients

By Ann Marie Gaudon, PNN Columnist

The last few years have been very difficult for pain patients in Canada. If you are one of the severely pained, you well know that government officials, in a misguided attempt to deal with the problems of addiction and overdose deaths, decided that doctors have been over-prescribing opioid medications and that pain patients taking opioid therapy were the cause of the problems.

The Chronic Pain Association of Canada (CPAC) knows this was never true.

Given the fact that overdose deaths continue to increase as opioid prescriptions have been drastically reduced, government policy has been a total failure while causing tremendous harm to innocent victims.

As a volunteer for CPAC, I want to let you know that our goal is to educate the public, people in medicine, regulatory bodies, and Health Canada on the nature and severity of chronic pain and its treatment. We are working hard behind the scenes to spread awareness with the correct information. No hype, no hysteria – just the facts.

CPAC has created an anonymous survey for Canadians needing opioid medication for pain treatment. We are running out of time and need your help.

The survey is designed to gain a snapshot of how your medical care has unfolded over the past couple of years and how this has affected your overall health. It will take approximately 5 to 10 minutes to complete.

If you are a Canadian pain patient in need of opioid medicines or a caretaker of same, this survey is for you. Please share it widely.

This survey is anonymous: we will not collect personal information, your email address or your computer's IP address.

Once we have collected the data, it will be shared with Health Canada, other government health officials, the media, and all of our allies. If you are not on our emailing list, please join us here.

The time is NOW for your valuable input. Take and/or share the survey by clicking clicking here.

Thank you for helping Canada’s only national advocate for pain patients. We can’t do it without you!

Ann Marie Gaudon.jpg

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.

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.

A Pained Life: We Need More Than Opioids

By Carol Levy, PNN Columnist

There is no question we need to be active and stay on top of what the CDC and other federal agencies are doing that impedes our ability to get opioid medication.  For many chronic pain patients, opioids are the only effective pain reliever.

I wonder though: In focusing almost all of our energies on the issue of opioids, are we ignoring another front that needs to be addressed?

Cancer seems like the best analogy to me, maybe the only one. There are many forms of cancer but at the end of the day they all involve the excessive growth of cells that spread into surrounding tissue. All cancers, to my knowledge, start from that one errant misfire.

bigstock-New-Pills-Smart-Experienced-P-230554117.jpg

In recent years we have seen cancer treatments change and become more specific -- this combination of chemotherapy for lung cancer, a different type of chemo for sarcoma or leukemia, and so on. But ultimately, they are all some form of chemotherapy.

Unlike cancer, we can’t put all of our eggs into one basket. There is no universal type of “chronic pain.” We need to have different treatments and regimens for each pain disorder.

Trigeminal neuralgia and other cranial neuropathies have a different cause and mechanism than rheumatoid arthritis and other autoimmune diseases. So do multiple sclerosis and arachnoiditis.  Conditions like fibromyalgia and Chronic Regional Pain Syndrome (CRPS) are still poorly understood and difficult to treat.

Unlike cancer, we need to have multiple approaches to chronic pain syndromes. No one has come up with anything better than opioids for pain control and relief – at least not yet -- so this choice must remain accessible. But we must also not lose sight of the need for better treatments and possibly even cures for every pain condition.

We have to let it be known that we need opioids, not because they make us high, but because there is nothing else out there to take their place.  It is well past time for the government to understand, if they want to end the use of opioids, they must first ensure that there are other viable options out there.

Carol Levy250.jpg

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.

Empathy Must Be Included in Pain Management Education

By Dr. Lynn Webster, PNN Columnist

The National Institutes for Health (NIH) is seeking input on how to improve medical education in the fields of pain management and the treatment of opioid use disorder.

Although the NIH is primarily asking healthcare professionals and researchers to weigh in, comments from the general public are also welcome. The information will be used to update the NIH’s Centers for Excellence in Pain Education, which is developing pain management curriculum for medical, dental, nursing and pharmacy schools to improve how students are taught about pain and its treatment.

If you are a person in pain, or love someone who is, your input is what all healthcare providers should hear. You can see the Request for Information (RFI) by clicking here. The link includes an email address to use to contribute your thoughts.

This is an opportunity to tell the NIH what you would like to see included in pain education, or what needs to be taught regarding opioid misuse or abuse. People often want to be heard. This is the time to let the NIH know what you believe is important to teach all healthcare providers.

Potential educational topics could include:

  • What should be the primary goal of pain treatment

  • The role of empathy, rather than animus, in treating people with pain

  • The power of trust, rather than suspicion and disbelief, in the therapeutic relationship

  • Techniques to reduce the stigma of pain, disability and opioid use disorder

bigstock-Bad-News-50387084.jpg

Therapies of the Heart

My comments to the NIH will include some of my strongly-held beliefs, including:

Pain therapy must include compassion. A therapeutic relationship may not be considered mainstream medical treatment, but it is crucial to pain management. It includes acceptance, compassion, listening, respect, encouragement, trust, kindness, patience, and being fully present.

I call these the therapies of the heart. They are simple, yet vital, components of a broad-based approach to treating the whole person.

Too often, people in pain are abandoned by health care professionals, family members, and friends. They need to be supported by all the key people in their lives and treated by medical professionals who are adequately trained.

Education should convey that pain isn't just biological. It is psychological, social, and spiritual. A healthcare professional who treats pain must internalize this concept to provide the most humanistic treatment possible.

The fact that withdrawal does not mean addiction is a concept too few people in healthcare understand. Any education that discusses opioids must make clear the differences between addiction and withdrawal. Providers also must learn that a person who experiences withdrawal is not necessarily addicted.

I will recommend to the NIH that their program require all participants watch Travis Rieder’s TED Talk on opioid withdrawal:

I will also ask that pain management curriculum make it clear that babies cannot be born addicted. The fact that the media commonly uses the phrase "addicted babies" in place of "babies with neonatal abstinence syndrome" only reinforces the misunderstanding of what clinical withdrawal means.

Additionally, education should address misconceptions about people in pain, and how chronic pain affects families and other relationships. Educational content should include a discussion of the losses that accompany chronic pain -- to the person in pain and also to their family members.

Providers need to be trained to understand that pain is personal and individualized; therefore, treatment must be individualized, too. What works for one person may not work for another.

_DSC8561.jpg

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth” and co-producer of the documentary, “It Hurts Until You Die.”

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.

Pain Is Not a Competition

By Mia Maysack, PNN Columnist

Recently I chose to step away from one of the last support group forums I belonged to because it continually felt less than supportive.  

“Pain is pain” may be the motto of our community, yet there are persistent comparisons that consistently belittle someone’s reality in some shape or form.  It’s like a competition to see who has the most pain.

To serve as one example, “cluster migraine” is not a scientific term, though it is a phrase I use to convey the type of pain that I feel -- an inclusion of multiple beasts (chronic migraine, cluster headache and fibromyalgia) that are not to be confused as the same or even similar, but co-exist within me nonetheless.

There's no doubt that cluster headache is one of the most excruciating conditions known to humankind. If you haven’t gone through it -- there is no possible way to fully comprehend it.  This does not mean that migraine is any less valid or any less painful.

We all seek validation in having our perception understood and it is frustrating that we consistently battle general stigma and then turn around and cast the same judgment onto each other. Cluster or migraine aside, it’s like a whole new attack.   

One person could say migraine is worse because it can literally be never-ending, whereas cluster headache episodes are considerably shorter in length. 

The next person states that it doesn't get any more terrible than cluster headache as they're called suicide headaches for good reason. 

upset-3079062_640.jpg

Then someone else shares they have lost someone to migraine as well. Point is, there's a spectrum.  

By eliminating the unnecessary tone of competition (that no one should want to “win” anyway), we make room for discovering the similarities we all share. One being that whichever way this sh*t pie gets sliced, it stinks!

Nobody wants or deserves to be shunned just because their truth is different. And no one gets to degrade how someone else views the world. Whether or not we agree, there should be a sense of camaraderie throughout our planet that is severely lacking. It most certainly shouldn't be among us Spoonies.  

Fixating on how an individual thinks does not benefit our cause. That same focused energy on the bigger picture could create lasting change -- like how the word “headache” isn't an accurate depiction of any brain disease or disorder to begin with. And if it were, aspirin would have cured it long ago, right? 

It’s imperative we avoid contributing to the very issue we want to solve by joining forces and declaring that we are more than just suffering patients. We are actual people living with the disability inflicted by these conditions.

And since we’re already in the fight for our lives, let's make sure it’s together and not against one another.

img1539183317715.jpg

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

The 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.