Online Censorship of Health Information Is Authoritarianism

By A. Rahman Ford, PNN columnist

Critics of stem cell therapy have taken their censorship campaign to another frightening and paternalistic step up the authoritarian ladder. Not only does it threaten freedom of speech, freedom of association and freedom of health, but now it’s targeting poor people.

The campaign to stop people from accessing stem cell therapy (SCT) has been building for some time. First there was fearmongering to scare patients away from SCT, followed by a push to have regulatory agencies increase enforcement.  Then came a call for social media platforms like YouTube to censor patient testimonials about the benefits of SCT.

Now, in a disturbing turn, critics are pressuring fundraising platforms like GoFundMe to purge campaigns that seek to raise funds for SCT.

In a recent op/ed in the BBC’s Future, London-based neurologist Dr. Jules Montague argues that crowdfunding sites like GoFundMe need to crackdown on patients seeking to raise money for stem cell treatments. Montague says their testimonials omit the “unfounded hype” and potential risks associated with SCT. These “bad actors,” according to Montague, should be banned to “halt the spread of misinformation.”

To propose that crowdfunding sites be tasked with choosing winners and losers in the marketplace of ideas, and to impose quasi-criminal sanctions on poor patients is to enter a decidedly dictatorial dimension. “Bad actor” is a legal term of art, and should be left to the jurisdiction of a court of law or other legislatively-authorized tribunal. That’s how things work in a democracy.

On the other hand, authoritarian regimes censor whatever speech they see fit, arbitrarily and without explanation. As it pertains to crowdfunding sites, what we absolutely do not need is unelected and unappointed “experts’” selling misplaced fears.

The question that should be asked is why do the SCT critics fear the agency of the people? Is the notion that people can make their own medical decisions – and accept the risks of those decisions – without “expert” stewardship, consultation or approval such a terrifying prospect?

Ultimately, this “purge and censor” line of argument represents a slippery slope that is distinctly anti-democratic. And at the bottom of the slope, are piled the bodies of the sick, whose desperation is fueled by the abject failures of mainstream medicine.

Equally disturbing is the fact that stem cell censorship on fundraising platforms would be a clear and unmistakable attack on the poor. Poor people are the ones who need to raise money, not the wealthy. The average person doesn’t have the finances of a star athlete like Max Scherzer or a celebrity actress like Selma Blair to get stem cell treatment. Instead, they have to rely on the generosity of others, a generosity that crowdfunding sites facilitate. To censor SCT fundraising is to not only censor a voice, but a livelihood, and maybe even a life itself. Poor people should not be punished for being poor.

Does Dr. Montague really expect GoFundMe and other sites to establish their own internal ethics boards and become the online sentinels of poor people’s health? There is no defensible or rational justification for preventing chronically ill poor people from raising the money they need to save their own lives.

Online Censorship Increasing

Unfortunately, online censorship of alternative health information is not new. In fact, it’s increasing. Facebook recently deleted dozens of alternative health pages without any notice or explanation. Some, such as Natural Cures Not Medicine and Just Natural Medicine, had millions of followers.

GreenMedInfo was kicked off Pinterest for violating its “misinformation policy” which bans “false cures” for chronic illnesses. And who helps Pinterest determine what health advice is false?

“We rely on information from nationally and internationally recognized institutions, including the CDC and WHO, to help us determine if content violates these guidelines,” Pinterest explained in an email.

Recent changes to Google’s Broad Core Algorithms have also suppressed search results for alternative medical information. As a consequence, hundreds of health websites have experienced drastic drops in traffic, including Pain News Network. One website, owned by alternative health advocate Dr. Joseph Mercola, lost about 99% of its traffic.

“Big Tech has joined the movement, bringing in a global concentration of wealth to eliminate competition and critical voices,” Mercola warned. “This year, we’ve seen an unprecedented push to implement censorship across all online platforms, making it increasingly difficult to obtain and share crucial information about health topics.”

“We’ve seen an unprecedented push to implement censorship across all online platforms, making it increasingly difficult to obtain and share crucial information about health topics.”

— Dr. Joseph Mercola

Even Wikipedia, which relies on open source editing for its content, has succumbed to the “deletionism” of alternative health information.

“We believe that organised skeptic groups are actively targeting Wikipedia articles that promote natural, non-drug therapies with which they disagree,” says the Alliance for Natural Health. “The new trick of these editors is to rewrite or entirely remove pertinent information from such articles or, worse still, delete entire articles altogether.”

It now appears that stem cell therapy is the next hooded subject to be escorted into the Star Chamber of deletionism. The call for fundraising censorship is distinctly ant-human, and denies the most essential and primordial of human instincts – to assist a fellow human being in their time of need.

It is not the place of GoFundMe or any other fundraising site to police people’s medical choices. GoFundMe, your core principles are turning “compassion into action” and the sharing of people’s stories “far and wide.” Please do not capitulate to the SCT bullies.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

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.

Government Grown Cannabis May Be Harming Research

By Roger Chriss, PNN Columnist

Physician researcher Sue Sisley, MD, has filed suit against the federal government over the quality of cannabis provided for her study on post-traumatic stress disorder. Sisley claims that the cannabis supplied by the DEA-sanctioned facility at the University of Mississippi is “suboptimal.”

Sisley told Green Entrepreneur that the DEA provided "standardized green powder that is just cannabis ground up.” She also said that the plants were moldy and contained sticks and seeds. 

Sisley is not the first researcher to say government cannabis intended for research is not the same as the cannabis available in dispensaries. This of course poses a key question: What is research cannabis?

Cannabis is a plant. Specifically, cannabis is the genus of a plant that includes the species C. sativa, C. indica, and C. ruderalis. There is still dispute if C. ruderalis should be included with C. sativa, or if all three species should be considered a single species, C. sativa. 

There is no precise pharmacological definition of medical cannabis. There is no agreed-upon level of THC, CBD, or other cannabinoids, and no accepted terpene profile. In dispensaries, cannabis comes in a large variety of strains used in a wide range of products. 

There is poor consistency among strains. Leafly recently attempted to measure the reliability of cannabis strains and found that even the most reliable ones were far from consistent at the levels necessary for clinical research.

Moreover, cannabis is a moving target. Because it is a commercial product often intended for nonmedical use, it is subject to a variety of market forces involving its various psychogenic effects. And new strains are introduced regularly. 

Further, cannabis products are consumed in many different ways, such as smoking, vaporizing, ingesting and through the skin . The bioavailability of cannabis varies significantly by route of consumption because of different absorption levels and metabolism. So whatever research cannabis is used would have to be specified by strain, amount and route of administration. 

For research purposes, that requires precise information. But as Genetic Engineering & Biotechnology News reported, medical cannabis comes in so many forms and has so many different uses that it presents a "unique challenge to cannabis testing laboratories." No existing test provides a good model on how to proceed.

In other words, there is no clear definition of research cannabis and there is no practical way to reliably test commercial strains with a consistency adequate for clinical studies. 

This means the definition of research cannabis is arbitrary. Researchers and advocates keep adjusting the definition or questioning the quality to explain away poor outcomes. According to Microscopes and Machines, when Dr. Sisley's PTSD study concluded, she unblinded the data and quickly came to realize the quality of cannabis provided by the University of Mississippi "had negatively affected the study’s efficacy data.”

But we cannot define research cannabis as the form of cannabis that only gives the results we were hoping for. This would be circular and self-justifying. It would also be self-defeating since we’d never know what, if anything, cannabis has to offer. 

Cannabis is a plant, not a laboratory-synthesized chemical being turned into a USP-grade pharmaceutical. As Jonathan Stea wrote in Scientific American,“it is best to conceptualize cannabis as a chemical soup with over 500 ingredients that can be served in countless different ways.”

This means that researchers will need to define their cannabis before starting a study. And the U.S. government will need to provide such cannabis. Fortunately, the National Institutes of Health is responding by producing more varieties of cannabis.

A more favorable legal landscape would also help. There may not be any “research cannabis” per se, but cannabis is certainly worth researching. 

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.

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.

Don’t Add to My Pain

By Mia Maysack, PNN Columnist

This month I celebrate the anniversary of finally getting a fibromyalgia diagnosis, after years of fighting to “earn” it. To my lifelong course of chronic migraine was added a heaping side dish of a nerve disorder.

Intractable pain is a constant state of being for me, whether I use essential oils, think positive, drink pickle juice for 40 days and nights, or even if someone belittles, disbelieves, mocks or minimizes it.    

People often say things like "I wouldn't be able to make it” if their head hurt like mine does every day. For many, there's no possible way to imagine what it is like, but I'm finding that those who cannot relate at all often have the most opinions about it.

Others wonder how I've been able to accomplish what I have while under the persistent weight of brain discomfort. The answer is simple: Because I've had no other choice!

When not entirely incapacitated, head pain for me has been managed with a grateful attitude and a mind over matter approach. Unfortunately, when navigating matters of the physical body, more restrictions apply.  Neither deep breaths nor the tapping of my ruby red slippers will get me up or down the stairs when I'm unable to walk. 

Many around me have taken all of this personally, because the extent of the hardships I face have left me trapped behind closed doors more than ever. 

Instead of stopping by or reaching out to check in, entire relationships have changed -- primarily because my ailments have yet to be acknowledged, let alone respected.

Only recently did others finally begin to grasp the concept of my migraine and cluster headaches.

But wrapping their minds around something else? Especially when I lack the energy and desire to continually attempt to justify or explain? Forget about it. 

One thing about me is that I rarely ever complain. I'm known to seek out silver linings and hand the light I find over to the next person in need. I count my blessings on a regular basis and never lose sight as to how much worse things could be or how they can change in the blink of an eye.

So, when attempting to bare my soul while being met with judgment, doubt, questioning or just flat out disregarded, I wonder if those who respond that way ever stop to reflect. Shifting blame toward me or my conditions for our lack of fellowship or communication doesn’t help the relationship.   

Not long ago I was out at a dinner, constantly having to shift in the chair or get up to stand, while repeatedly being reminded what we're conversing about due to brain fog. All the while my head is banging and I can barely eat because the nausea from attempting to ignore everything else was heightening.   

The dear one I'm out with mentions another friend who endures similar circumstances. He proceeds to explain how he's had to carry this person out of places and into their home due to the extent of their fatigue. Hearing this tears me up because I can literally feel for them.  

But instead of using this opportunity to bond, my emotion was met with ridicule: "You are SO sensitive! I cannot talk about ANYTHING with you!"  

It felt like insult to injury, that they'd demonstrate compassion for another but then put me down.   

Before that, someone else I love labeled my chronic pain as a "placebo effect." More recently, even after discussing my disability hearing, a friend wondered if I had a gym membership because they didn’t want to work out alone.  

Not that it is blasphemous to bring up the topic of exercise, but it showed a lack of empathy. If I am in need of using a cane, not always able to drive, experience muscle failure and soreness to the touch, what about that signifies my readiness to lift weights or hop on a treadmill?

I used to go out dancing regularly, but the last time was about 24 months ago for an ex co-worker's bachelorette party -- whose actual wedding I ended up missing because of all this. Another homie of mine hasn't replied to me since I'd been forced to cancel attending her kid’s birthday party at the last minute.  

Quite honestly, if I keep in contact with just about anyone, it's because I initiate the connection. Many have flat out stopped talking to me altogether because my consistent need for self-care is an inconvenience for them.  

What they don't know is that all of this is so real. The other day, I purposefully went outside in the rain to pre-shower, because with Mother Nature's help the chore felt slightly less daunting. 

Having been dealt this hand and then being left to cope on your own has a way of demonstrating the extent of one’s strength they may not have realized they had. I am thankful for everything that broke me because that’s what I am made of.

I now declare unapologetically that all of this has forced me to change. Nothing is welcome in my life that adds more hurt or disrupts my peace. My hope is that everyone reading this reaches the same conclusion and thereby a level of freedom.    

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.

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

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.   

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.

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.

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.

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 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.  

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 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.

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 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

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.

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. 

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.

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.

Medical Cannabis Won’t Solve the Opioid Crisis

By Roger Chriss, PNN Columnist

Medical cannabis legalization isn’t helping reduce opioid overdoses. Two major studies have closely examined over a decade’s worth of data, finding no support for the idea that legalizing medical cannabis reduces prescription opioid use, overdose or mortality.

In June, Stanford researchers led by Chelsea Shover, PhD, published a study in PNAS using the same methodology as a 2014 JAMA study that found a positive association between cannabis legalization and lower opioid mortality from 1999 to 2010. But Shover and colleagues included more recent data and states with legalized medical cannabis.

“Our expanded analysis does not support the interpretation that broader access to cannabis is associated with lower opioid overdose mortality,” they concluded.

The 2014 study was very cautious in its findings, but cannabis advocates and industry representatives used it to support legalization efforts.

“It’s become such a pervasive idea,” Shover told STAT News. “It would be amazing if it was this simple, but the evidence is telling us now that it’s not.”

Early this month, Columbia University’s Mailman School of Public Health published a new study in JAMA Network Open that looked at whether people use cannabis in place of prescription opioids.  Researchers looked at data from 627,000 people aged 12 years and older who took the National Survey on Drug Use and Health from 2004 to 2014.

The results showed that enactment of medical marijuana laws was not associated with a reduction in prescription opioid abuse, contradicting the hypothesis that people would substitute marijuana for prescription opioids.

“We tested this relationship and found no evidence that the passage of medical marijuana laws — even in states with dispensaries — was associated with a decrease in individual opioid use of prescription opioids for nonmedical purposes," said senior author Silvia Martins, MD, PhD, an associate professor of epidemiology at Columbia.

The Shover-PNAS study also made the important point that medical cannabis users comprise only about 2.5% of the U.S. population. The vast majority of cannabis use is recreational. The Washington State Liquor Control and Cannabis Board estimates that only about 20% of so-called medical users are really using cannabis for medical reasons.

In other words, there aren’t enough medical cannabis users to impact nationwide overdose trends. And in state-level analysis, there is no evidence of any substantial effect, positive or negative, from medical cannabis legalization.

There are concerns that cannabis could actually make the opioid crisis worse. A 2018 study published in the American Journal of Psychiatry found that “cannabis use appears to increase rather than decrease the risk of developing nonmedical prescription opioid use and opioid use disorder.”

“Scientific evidence does not support claims that marijuana helps people kick opioids.”

— Dr. Nora Volkow, NIDA Director

"My main concern is by basically misinforming potential patients about the supposedly beneficial effects of cannabis, they may forgo a treatment that is lifesaving," NIDA director Nora Volkow, MD, told USA Today. “Scientific evidence does not support claims that marijuana helps people kick opioids.”

The FDA is taking note, warning a large cannabis operator last week to stop making unsubstantiated claims that its products can treat chronic pain, cancer, opioid withdrawal and other medical conditions.

Medical cannabis has uses, of course, but taking it for conditions it is not proven to help may lead to harms. Perhaps a way can be found to incorporate cannabis in addiction treatment, but that is quite different from expecting medical cannabis legalization to be an exit ramp for the opioid crisis.

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.

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.

Addiction and the 2020 Presidential Race

By Dr. Lynn Webster, PNN Columnist

I found the recent story about Hunter Biden's drug and alcohol problems disturbing, not because he has an addiction — there's no shame in that — but because of the way the media tiptoes around the problem.

There seems be some reluctance to discuss Hunter's problem because of the way it may affect his father – former Vice President Joe Biden – and Biden’s bid for the presidency in 2020. To me, this illustrates a serious barrier to addressing the terrible disease of addiction.

Drugs, Politicians and Their Families

Marijuana is not considered a hard drug today, but it was considered a serious drug of abuse 27 years ago, when President Bill Clinton admitted he had used it. The stigma attached to using marijuana at the time was such that he disingenuously claimed he didn't inhale.

Of course, Clinton wasn't the only president who used or abused chemicals. Nor was he the only president whose reputation took a hit when his drug use was exposed to the public:

President Richard Nixon was reported to have an alcohol problem that worsened as his presidency neared its end.

President George W. Bush reportedly used cocaine in his youth and admitted “drinking too much.” ABC News even polled voters to find out whether his cocaine use might affect their willingness to vote for him.

President Barack Obama admitted that he used marijuana and cocaine. He was also a cigarette smoker with a nicotine addiction, and dealt with media inquiries about his attempts to quit throughout his presidency.

Hunter Biden is not the only family member of a presidential candidate with addiction.

Jeb Bush's daughter, Noelle Bush, had a drug problem. New York City Mayor Bill de Blasio’s daughter, Chiara de Blasio, abused alcohol and drugs while dealing with depression. Sen. Amy Klobuchar's father has struggled with alcohol his whole life. And President Trump’s brother, Fred Trump, Jr., died of complications related to alcoholism, which contributes to an estimated 88,000 deaths per year.

What Do Candidates Know?

Clearly, the endemic nature of addiction in our culture means that we should be interested in how the candidates deal with the presence of drugs in their lives. Are they able to talk openly about drug use instead of letting it remain a dark and shameful secret? Are they compassionate and supportive of family members who struggle?

To what extent do they personally use drugs and alcohol in daily life? And by extension, how well do they cope with stress? These are relevant, appropriate questions for candidates auditioning for a job that impacts the entire world.

It would be inappropriate to vote for a candidate solely on the basis of whether or not their loved ones struggle with addiction. But one criteria we can use for voting is a candidate’s positions on the critical issue of addiction in America. Here is how I would evaluate a candidate:

1) How much awareness do they demonstrate on the basic issues, including:

• Do they know the difference in the prevalence of prescription opioid vs. illicit opioid abuse?

• Do they know that addiction is not determined by the drug, but by genetic and environmental factors?

• Do they know that the volume of pills prescribed to people in various parts of the country does not determine the number of overdose deaths?

• Do they know that the prevalence of overdose deaths correlates with the loss of jobs and lack of income opportunity?

2) Will they de-stigmatize the disease of addiction by:

• Decriminalizing the use of drugs?

• Acknowledging addiction is a disease?

• Understanding that babies cannot be born addicted?

• Educating people that physical dependence and withdrawal can occur without addiction?

3) Do they favor access to substance abuse treatment in a timely fashion for everyone who needs it, regardless of their ability to pay?

4) Will they advocate for people in pain to receive opioid therapy when appropriate at the dose determined by their provider, rather than by the government?

5) Will they acknowledge the unintended consequences of the CDC opioid prescribing guideline?

Shining a Light on Addiction

The ideal candidate should recognize the tragedies associated with all addictions, not just with prescription opioids. He or she must recognize that addiction is part of being human, and that some people are more vulnerable to addiction than others, just as some people are more vulnerable to developing cancer or heart disease.

Whoever becomes or remains our president must shine the light of information on addiction, rather than hide it in the darkness of misinformation, shame and denial. 

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.”

You can find him 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.

Finding Safe Shores From Suicidal Thoughts

By Mia Maysack, PNN columnist

When you have lost or almost lost loved ones to suicide, it changes you.  

My first experience with this happened at a young age and I took it very personally, even though it was an intimate, personal decision that didn't involve me. I guess that is one of the things that hurt most about it.  

Time passed, life was experienced and as my health conditions worsened, I found myself on the stone-cold ground of rock bottom -- which granted me a bittersweet comprehension of the temptations to end never-ending pain.

Years later, someone I cared for took her own life, after secretly enduring the late stages of terminal cancer. I’d witnessed that kind of suffering before during my days working in hospice care. This further reshaped my mind around the concept.

Of course, none of us want to lose anyone, especially in a way such as this, but the question does remain.  Which could be considered more “selfish” -- someone eliminating their life or someone else not wanting them to?

“I want to leave this earth because I feel as though I just can't do it anymore. It truly has nothing to do with anyone else. I am solely human and have reached my absolute breaking point.  Ultimately, I make my own decisions -- though it’s impossible to comprehend the ripple effect my actions will have on others.”

“I don't want you to leave this earth because I care so much about you. I know you feel as though you cannot do this anymore, but I am here for you and have a difficult time understanding why that isn't enough. I would do anything to ease your suffering. There are others who care and need you, so stick around for their sake.”   

The dialogue may as well be night and day, two entirely different realities.  Both lack consideration for the other on either end of the spectrum.  

Some pain sufferers may not have even one support person in their lives who they can turn to when the going gets tough, yet many seem to think the best way to deal with suicide is by not talking about it. They fear that by discussing it and making it real, somehow that will trigger chaos and we'll begin dropping like flies once the seed has been planted. 

The intent of this article is the exact opposite.

Recently I took part in a class where this topic was discussed in a small group session. To my left was a person who had been in pain their entire life. They were over it, pun fully intended, literally in the process of orchestrating a move to someplace where assisted suicide is legal. 

To my right was someone also in pain, who was squeamish about the subject and could not begin to relate to it.

Then there was me, a splash of irony right there in the middle.

Not too long ago, I took a mental health day at a local beach along Lake Michigan. When I am able to swim, my skills are strong. But as I approached my targeted distance, weather conditions shifted and I was both pulled under and pushed back. It was as though I'd been swept into a riptide and under current at the same time.  

At this point, I was exhausted and in low temperature water far longer than anticipated. Swirling thoughts crashed into my mind, much like the waves that had begun to cover my face. If I'm not able to move into shore I will die.

I've made it through worse, and there's no way this is how it's going to end-- not without a fight. So I powered through the water at full force until I felt as I could no longer – which is when the tip of my toes could finally touch the sand bar.  With a touch of hypothermia and major shock to the system, I made it.     

This is everyday life with chronic pain and illness. The emotions can submerge and escort us to the very edge of sanity, a tsunami that can swallow us whole and leave us fighting for every breath. Sometimes these ailments are much like anchors on our feet, shackling us to inevitable trenches of darkness and gloom.    

Many who can relate to these experiences are traumatized by judgmental stigma, so it's important that we acknowledge it is not only understandable but also normal to feel defeated. 

Observing these feelings as opposed to just absorbing them is a way of co-existence. The relationship with oneself is critical. At some of our lowest points, it is within us to choose the direction of our sails and head to safer shores.   

When navigating the treachery of these waters, our pursuit of quality of life against all odds presents itself as proof that we can make it through this and that we're in it together. We just gotta Keep Our Heads Up!  

If you or someone you know is contemplating suicide, PLEASE REACH OUT 

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.

A Survival Guide for Opioid Withdrawal

By Crystal Lindell, PNN Columnist

Maybe your doctor cut off from your medications. Maybe you had a pain flare and ran out of pills a week before your next scheduled refill. Maybe you just don’t want to deal with opioids anymore because they’re harder to get than Beyonce tickets.

Whatever your reason for going off opioids, it’s likely you’ll have to deal with physical withdrawal — especially if you’ve been taking them for a while. But there are ways to minimize the symptoms.

I also would be remiss if I didn’t mention that my boyfriend, Chris — who also has chronic pain and gone through opioid withdrawal more than once — helped me compile and write this list.

So from two people who’ve gone through it more than a few times, here is our opioid withdrawal survival guide:

1. Talk to a doctor first

If you have access to a doctor, and you feel comfortable doing so, talk to her about it. I’m not a doctor, I’m just a patient, so please keep that in mind with everything else I say.

2. Be aware of what the symptoms are

Know thy enemy, as they say. There are a lot of symptoms caused by opioid withdrawal that you may not be expecting — especially if your only reference point is pop culture. I like to say that opioids sort of shut down your systems, and withdrawal turns everything back on at full volume.

You’ll probably experience some or all the following, and they’ll likely start kicking in within about 24-48 hours.

• Diarrhea

• Nausea and vomiting

• Sneezing and runny nose

• Anxiety and panic attacks

• Fatigue (Your natural instinct may be to reach for caffeine or other stimulants, but be careful. They likely will just make your anxiety worse and it won’t touch your fatigue)

• Insomnia

• Sweating

• Yawning and watery eyes

• Restless legs (Your legs move on their own while you’re sitting or lying down. I know, I thought it was fake too, but it is very real and difficult to deal with).

• Muscle aches

• Goosebumps

• Dilated pupils

• Hyper-libido and increased sex drive (Remember, opioids turned off everything and withdrawal turns it back on)

• Increased fertility (Being on opioids can make it difficult to get pregnant and withdrawal will have the opposite effect. If you want to avoid pregnancy, make sure to use birth control)

• Thrill-seeking behavior and mood swings (As the ups of your day give way to the lows, you may find yourself seeking out risky behavior as a way to improve your mood and receive the adrenaline that you so desperately crave).

3. Suicidal thoughts

I wanted to pull this one out separately from the other symptoms because it’s potentially so dangerous.

There are a lot of news reports about opioid users who kill themselves after they get clean. Reporters often frame it as though the person got off opioids, took a look around and decided that what’s left of their life just wasn’t worth living. That’s not usually the case though. Withdrawal itself will make you suicidal.

The good news? Knowing it’s being caused by withdrawal and not by crappy life circumstances may make it easier to push through it.

The best way to combat this symptom is to know it might happen and have a plan in place to deal with it if does. I once went seven days without any opioids when I had a full-on, hours long anxiety attack and planned to kill myself. I eventually gave in and took just one small hydrocodone, and within an hour my mind and spirit had calmed.

Which brings me to my next piece of advice.

4. Taper, Taper, Taper

Popular culture has perpetuated the idea that quitting opioids is all about will power. That’s a bunch of B.S.

Most relapses occur because people don’t properly taper their dose. Regardless of why you take opioids, your body has likely gotten accustomed to having them, just like it would have gotten used to a heart medication.

The best and safest way to successfully get unaccustomed to opioids is to taper off them as slowly as possible.

What does that look like? Well, if you take five pills a day, go to four for a couple weeks (yes, weeks), then three, then two, then one, and then even half. I personally noticed a lot of symptoms even going from one pill a day to zero — so if you can split a pill in half, do that.

If you are using drugs illegally, tapering might look a little different. One thing you can do to taper is switch to a weaker drug. Another important step would be changing how you take it. So if you’re snorting it, switch to taking it orally as part of the tapering process. If you’re injecting, try taking it in any other fashion that will allow you to bridge the gap.

5. Consider using kratom

Of course, tapering only works if you still have access to pills or drugs. If you don’t — there’s still help available. Kratom is your new best friend. It will drastically reduce your withdrawal symptoms.

Personally, I think kratom is also a good long-term solution for chronic pain and is a lot milder than pharmaceutical-grade opioids. Assuming it’s legal in your state, kratom is much easier to get than opioids and does not require a prescription. You can get kratom online, at most smoke shops, and even some gas stations.

For the record, the FDA has not approved kratom for any medical condition — including addiction treatment. And some researchers say kratom is a public health threat because it is unregulated.

6. Consider using marijuana

If you can’t get kratom for whatever reason, marijuana will also help you taper down. Edibles in particular will help with insomnia, anxiety, muscle aches, and restless legs.

But beware, if you haven’t taken edibles before, even a very small dose may knock you out for a few hours.

7. OTC medications

There are some over-the-counter medications that will help reduce symptoms:

• Imodium (to help with diarrhea and nausea)

• Benadryl (to help with the sneezing and insomnia)

• Tylenol (to help with aches and pains)

• B1, B12, multivitamins and potassium (to help replenish what your body loses from the sweating and diarrhea, which is a huge step toward feeling better)

8. Avoid alcohol

You may be tempted to reach for a glass of wine or a shot of vodka to ease your symptoms — but trust me, they will just come roaring back even stronger after it quickly wears off. Try all other options before you resort to a stiff drink.

9. Consider Suboxone and methadone

Depending on what you were taking and for how long, you may not be able to get through withdrawal without medication assistance treatment.

Suboxone (buprenorphine) and methadone are two opioid medications that can help you through withdrawal, and they are medically proven to be effective. You’ll have to get both from a doctor, and they may not be covered by insurance. But they may also be your best shot at getting off opioids long-term.

10. Don’t go back to your old dose

You start off strong. You tell yourself you’ll never take even one more hydrocodone again. But seven days later, the hell of withdrawal has finally beaten you down enough that you decide it’s just not worth it.

It’s okay. It happens. It doesn’t mean you’re a bad person.

BUT DO NOT TAKE YOUR OLD DOSE!

I can’t be clear enough about this. In just one short week, your body’s tolerance levels have already shifted. And your old dose is going to hit you like a freight train. It may even be strong enough to kill you.

Sadly, this is how a lot of opioid users die. They assume their bodies can handle the same fentanyl patch they were using just a short seven days ago, and it’s suddenly way too strong. This can also happen when someone goes through a formal rehab program, gets out and goes right back to their old dose. It’s enough to stop their breathing.

You may have heard of this phenomenon when it comes to celebrity deaths, like Cory Monteith from Glee. As it explains on Monteith’s Wikipedia page: “After a period of cessation from opioid drug use, a previously tolerated drug concentration level may become toxic and fatal.”

In other words, he was just clean enough for the opioids to kill him.

Even if you’re used to a small dose, like 60mg of hydrocodone a day, once you’ve gone through a couple days of withdrawal, those 60mg are going to hit you incredibly hard.

11. Have Narcan on hand

Along those same lines, I highly recommend you have Narcan (naloxone) on hand just in case, as it can reverse the symptoms of an overdose and potentially save your life. In many states you can even it get it over-the-counter, without a prescription.

Narcan is one of those things you think you’ll never need until you need it. I keep a dose in my house because I regularly take prescription opioids and I want to be as safe as possible. Even if you don’t personally need it, you never know if a child or someone else might find your medications. And you’ll want to have it on hand if that happens.

12. Remember it’s a marathon

In the movies, withdrawal is like three days and then you’re healed. Even though most of the physical symptoms will be gone in about a week, you can still have withdrawal symptoms for up to two years.

It’s called Post-Acute Withdrawal Syndrome (PAWS) and it can include things like panic attacks, insomnia, restless legs, anxiety, risk taking behavior and suicidal thoughts.

13. Get help from family and friends

It’s so important to have a least a couple friends or family members around to help you through it. My best friend and my boyfriend are my go-to because I know they won’t judge me and they’ll be supportive.

If you have the option to be around another person as much as possible, definitely do that. They can help take your mind off the physical symptoms and help you cope with the long-term psychological ones you may experience. Anxiety is a lot easier to deal with when you’re hanging out with your best friend.

14. Find a therapist you trust

If you were getting opioids with a legitimate prescription from a legitimate doctor, you may not think you need long-term addiction treatment. But you still have a medical condition that warranted a long-term opioid prescription. That means you probably would benefit from having a therapist to talk to about how you’re coping with all of that.

Your doctor may be able to refer you to someone, and Psychology Today also has a decent directory. These days, you can even do it all online, with sites like Better Help, which offers access to counselors via phone and text.

I also personally found a low-dose SSRI helpful for dealing with the long-term anxiety and panic attacks, so you may want to talk to your doctor about an antidepressant or anti-anxiety medication.

15. Don’t be too hard on yourself

You’re doing better than you think you’re doing, I promise.

And we’re all rooting for you. You’ve got this.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. Crystal has hypermobile Ehlers-Danlos syndrome. 

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.

When I Call Myself Disabled

By Barby Ingle, PNN Columnist

Recently an interesting hashtag started trending on Twitter: #WhenICallMyselfDisabled.

Cassie, a friend who also has chronic pain, sent me a message to make sure that I had seen it. I am so glad she did because it sparked something in me that I didn’t even know I had an opinion about.

There are so many people in the chronic pain community and we all have different disabilities, diseases, genetics, treatments, healthcare, etc. Even people with the same diseases and conditions can have different levels of disability.

There are many legal and governmental definitions of disability. For example, to qualify for Social Security disability, a person must have a physical or mental impairment that has lasted or is expected to last at least 12 months and which prevents them from doing a "substantial” amount of work.  

The American with Disabilities Act broadly defines disability as a physical or mental condition that substantially limits one or more major life activity.

Often healthy people have a tough time understanding what we live with or the challenges we face on a daily basis. That’s where #WhenICallMyselfDisabled comes in. It can help us explain our own personal definitions of disability and how being disabled impacts our lives.  

The first time I pulled up the hashtag on Twittter, I didn’t plan on sharing it. I was just reading through various tweets when my personal lightbulb went off. When did I start considering myself disabled? How do I define it?

Here’s how I responded on Twitter:

#WhenICallMyselfDisabled its because I do not know when I will be able 2 physically attend an event or have to leave early due to lights, noise, fatigue, having a seizure, a pain flare that no 1 can see but levels me, having an asthma attack from walking or smoke... I could go on pic.twitter.com/aEzxgKJZKH

— Barby Ingle 📣 (@BarbyIngle) July 5, 2019

Here's how some people responded to my Tweet:

 It's a life of pure hell isn't it? This is called living???😟😟😥

Oh, I can so relate hun. 💟

Me three. I’m tired & in constant pain. Don’t make me wait in lines, stand at counters, walk stairs, etc. It’s not cuz I’m lazy I gd walked 4,000 miles once! But of course, everyone assumes it’s cuz I’m unmotivated & they hope that pushing my limits is tough love lesson I need.  

I later went to Facebook and shared a longer version of my Twitter message:

#WhenICallMyselfDisabled it’s because I do not know when I will be able to physically attend an event or have to leave early due to lights, noise, fatigue, having a seizure, a pain flare that no 1 can see but levels me, migraine, having an asthma attack from walking or smoke... I could go on, when was the last time I slept, when is the last time I vomited from the pain, is my hand working or is the dystonia attacking today. I could go on and on!

I call myself disabled because I can’t sing, dance and cheer the way I used to. I could go on and on... Despite being disabled, I do my best to be my best and be the best me I can be. Being disabled just means it takes me longer, I have to find another way to accomplish things in life, I still have value and worth.

I didn’t know if my Facebook message would resonate or not.  I just had a feeling how powerful this hashtag could be in helping others understand we may look normal and fully functioning, but don’t take our looks for granted. Here are a few tweets I saw after my post on Facebook.

#WhenICallMyselfDisabled I am acknowledging that my body is different but normal.

#WhenICallMyselfDisabled I feel like I finally really understand my body and mind and can accept them as they are. I have so much more confidence moving through the world, and acceptance (from myself) that the accommodations I need aren't laziness or selfishness.  

My Facebook message received more than 80 likes, comments and shares, so I know it resonated with my pain friends and “non-disabled” friends. It was an outpouring of support and helped lift stigmas that society often puts on people who need some extra help, assistance or time.  

Knowing that no matter what disability I have that I still have value and worth makes me feel so much better. I’m glad the hashtag trended. It could have been a pity hashtag, but I found it to be socially educational and meaningful. I am glad so many others joined in before and after me. A message like this can go a long way to change how we are viewed.  

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.  

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.