I Would Not Be Alive Without Dr. Tennant

(Editor’s note: As PNN has reported, last week the DEA raided the home and offices of Dr. Forest Tennant, a prominent pain physician in California.  The DEA search warrant alleges that Dr. Tennant is part of a “drug trafficking organization” and prescribes excessive amounts of opioid pain medication. Dr. Tennant treats about 120 patients with intractable chronic pain, including many from out-of-state who can’t get effective treatment elsewhere. Kimberley Comfort is one of them.)  

By Kimberley Comfort, Guest Columnist

My Dad searched the country for help for me, as I have spent my life since September 2010 in 24/7 intractable pain. I ended up having two major surgeries trying to help. None helped with the severe intractable pain.

My Dad finally found Dr. Tennant and flew me on three plane seats, while he sat in another row, so I could remain laying down to reach California in January 2014.

Dr. Tennant saw me for over 12 hours in two hour sections in the morning and afternoon. He was essentially a charity. It was 12 hours of full one-on-one attention for $100. He did extensive examinations, blood tests, a genetic test, and trying out different very mild exercises once he diagnosed my adhesive arachnoiditis. He explained some treatments that might help if I ever had my spinal cord stimulator removed.

KIMBERLEY COMFORT

Dr. Tennant did prescribe me some additional opioid medication, while awaiting the results from genetic testing, along with vitamins, minerals, anti-inflammatory drugs, and a water reduction pill that mainly concentrated on the spine.

He agreed that I try a drug combination from a doctor in France that my Dad had researched and spoken with. Opioids were Dr. Tennant's last choice and high dose opioids were for those who metabolized the opioids much too fast.

Dr. Tennant thought I should return monthly, but we explained that the flight was just way too much for me to handle. So Dr. Tennant explained that palliative care was all that remained. He wrote letters to my pharmacy in Florida explaining my disease and why I was requiring such high amounts of opioids. He wrote my primary care provider and explained everything to him, offering to help in any way he could.

Dr. Tennant had recommended injectable Dilaudid, but my doctor would not give me that. Instead, it took him another 15 months and 4 different opioids to get me to a point where I was not in intractable pain 24/7.

I would not be alive today if it were not for Dr. Tennant. There is no way I could or would survive the pain I have without my high dosage of opioids. The genetic test showed I was a very fast metabolizer of opioids.

I have suffered with pain since I was a teenager.  Even back then, I was given opioids with Valium. My primary care provider still gives them to me today. If a doctor told me my liver was dying and they needed to cut back on my opioids, my answer would be the same now at age 52, as it was at 16.  I would much prefer a shortened life with manageable pain than to live a long torturous life with intractable pain. Frankly, I believe my heart would give out if I faced intractable pain again 24/7.

The opioid doses that the CDC recommends are far less then I have been on since the day adhesive arachnoiditis hit me like a Mack truck.

As for the money Dr. Tennant received from Insys Therapeutics, it is very little compared to some doctors. Doctors often get paid for speaking, get free lunches for the staff and themselves, and airfare to conferences where they will speak. Dr. Tennant is far from the only doctor to do this.

One can go online to ProPublica’s Dollars for Docs and see how much your internist, orthopedic surgeon, neurologist, etc. got from pharmaceutical and medical device companies. It shows that from 2013 to 2015, Dr. Tennant received $127,000.

Compare that to the highest paid doctor. Dr. Roger Jackson, an orthopedic spine surgeon, was paid $54,100,000 during that same time period.

DR. FOREST TENNANT

Dr. Tennant basically works for nothing. You should see how hard and long he works, speaks to educate doctors, and does research to help those of us who would very likely be dead if not for him. To me, Dr. Tennant is a saint!

The DEA should be going to Dr. Tennant, not to raid his offices, but to learn from him. My understanding of U.S. medicine is that a doctor had to be a Doctor of Public Health (DPH), as Dr. Tennant is, to have prescribed pain medication back in the 1960’s. Dr. Tennant was sent the worst of the worst pain patients back then, when “learning to live with it” was impossible for severely injured patients. Pain patients from all walks of life were referred to him for help that the other doctors could not give.

Dr. Tennant is far more educated than most any doctor left today, except perhaps other DPH doctors who have kept up with the times. In my Dad’s research, we found no other doctor specializing in intractable pain. Dr. Tennant has more than 35 years of prescribing pain medication under his belt. He knows what works and what doesn’t. He is the doctor the DEA and the Department of Justice should be calling as an expert witness in the treatment of pain, not going after.

This is nothing more than a smear campaign to try to ruin Dr. Tennant. All these government agencies, Physicians for Responsible Opioid Prescribing (PROP), and the news media have mixed up illicit drug use with needed intractable and chronic pain relief. They are mixing apples with oranges. Pain patients do NOT get a high from opioids. If we are lucky, we get some relief. Some get more relief than others and can go back to living a fairly normal life with opioids.

The crackdown on pain medication isn’t going to stop an addict from looking for that next high. Overdoses will continue even if the DEA, FDA, CDC and DOJ totally eliminate opioid medication. People will find something else to get high with and we will still have overdoses.

The intractable pain patient who has followed the law and their prescription directions will never get high and will, if they’re lucky, be able to have some semblance of a life. Take away their opioid medication and you will murder these people by forcing them to take their own life or waiting until their body fails from the extreme stress of the pain. Our blood will be forever on your hands.

You are trying so hard to take down any doctor who follows the Hippocratic Oath they took to render care to those who need it. You are too ignorant to not recognize the bad science used by the greedy doctors trying to get more money for rehabilitating illicit drug users. You fail to listen to the experts in the treatment of pain and instead only care about the treatment of addicts.

We, the intractable and chronic pain patients, need and depend on the assistance of the few remaining doctors willing to help. Let Dr. Tennant continue to be the highly educated pain doctor he is. Let him continue to help us stay alive and be with our loved ones.

We all are suffering, some worse than others. Without Dr. Tennant and those good doctors you have already tossed to the curb or worse, you will be responsible for our screams of pain and our forced intentional suicides. It will be murder by proxy.

Kimberly Comfort lives in Florida.

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.

Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

The FDA Got it Wrong on Stem Cells

By A. Rahman Ford, Columnist

In August, FDA Commissioner Scott Gottlieb, MD, signaled that his agency would move in the direction of enhanced regulation of stem cell therapies.  He said the action was justified because of “unscrupulous actors” who deceive patients with what he described as “dangerously dubious products.” 

Although the FDA referred to its prospective actions benignly as “enforcement” and “protection,” the likely impact seemed obvious – safe and effective therapies that have been healing patients for years would become less available and more expensive. 

Those concerns have now been made real.

This week the FDA released its final guidance on regenerative medicine and stem cell therapy, an approach that relies extensively on more regulation.

“We’re at the beginning of a paradigm change in medicine with the promise of being able to facilitate regeneration of parts of the human body, where cells and tissues can be engineered to grow healthy, functional organs to replace diseased ones; new genes can be introduced into the body to combat disease; and adult stem cells can generate replacements for cells that are lost to injury or disease,” Gottlieb said in a statement.

“We’re adopting a risk-based and science-based approach that builds upon existing regulations to support innovative product development while clarifying the FDA’s authorities and enforcement priorities. This will protect patients from products that pose potential significant risks, while accelerating access to safe and effective new therapies.”

Unfortunately, from both a patient and policy perspective, the FDA’s guidance is distinctly retrograde, drifting backward against a cosmic tide of scientific discovery that should be propelling post-modern medicine forward.  Not only are the FDA’s actions potentially detrimental to the health of Americans who suffer from chronic illnesses that could be treated or even cured by stem cells, they could cripple the entrepreneurship, ingenuity and cost-effectiveness of regenerative medicine. 

For the next 36 months, Gottlieb says FDA will adopt a “risk-based approach” in enforcement of the new rules, “taking into account how products are being administered as well as the diseases and conditions for which they are being used.”  While this grace period seems reasonable, the final guidance makes clear that the FDA will prioritize the oversight of clinics that deliver stem cells via intravenous infusion, in part because “use of these unapproved products may cause users to delay or discontinue medical treatments that have been found safe and effective.”

But intravenous stem cell administration has been safely used to treat patients suffering from painful autoimmune diseases like multiple sclerosis.  I have personally had intravenous stem cell therapy, and found it to be both safe and effective. 

‘Minimal Manipulation’ Test Tough to Pass

While well intended, the FDA’s guidance suffers from unduly restrictive definitions of “minimally manipulated” and “homologous use” -- key standards that will determine the availability of future stem cell therapies. 

Stated simply, stem cells that are “minimally manipulated” will not need to be approved by the FDA via clinical trial.  But that’s a tough test to pass and would seem to rule out mesenchymal stem cells, which help reduce inflammation in orthopedic and autoimmune conditions, conditions that cause unbearable pain for countless Americans.  The FDA’s conception of “minimally manipulated” is simply too limited.

The “homologous use” definition is likewise flawed.  Even if a stem cell product passes the “minimally manipulated” test, the cells used must “perform one or more of the same basic functions in the recipient as the cells or tissues performed in the donor.”  Under this definition, blood stem cells can be transplanted into a person with a disorder affecting their blood system, but cannot be used to repair damaged tissue, as in the case of a child’s cerebral palsy or a wounded veteran’s traumatic brain injury.

However, in a cruel twist, adipose (fatty) tissue used for cosmetic procedures like breast reconstruction and augmentation do satisfy the “homologous use” test and do not require a clinical trial.

Essentially, under these guidelines, the FDA strong-arms the child with cerebral palsy and the war veteran to the back of the medical bus, while giving breast augmentation the VIP treatment and ushering it to the front.  Sorry FDA, big breasts are not more important than curing diseases. 

FDA Should Respect Privacy Rights

Additionally, as I have written about previously, Americans have a constitutionally-protected privacy right in their own cells.  The FDA’s new rules completely ignore this right.  It is a basic right that emanates from established Supreme Court case law and fundamental principles of personal liberty and autonomy, and protections against undue intrusions upon bodily integrity. 

One’s body and one’s health are indeed intimate and personal matters that federal agencies must respect.  Instead of being overly preoccupied with a cell’s “same basic function,” the FDA needs to be concerned with a person’s “fundamental basic right” to use their own cells as they see fit.

In fact, one could easily argue that sufficient government regulation and patient protections already exist in federal and state law, as well as medical ethics boards.  The truth is that additional federal regulations are unnecessary, unduly burdensome, and infringe upon the sanctity of the physician-patient relationship and our right to control our own bodies. 

Commissioner Gottlieb’s declaration that patient safety is of paramount concern is a pleasure to hear.  However, in practice, the FDA’s regulatory efforts will likely serve to retard medical innovation and force Americans to travel abroad for life-saving stem cell therapies. They also preserve a “clinical trial” approach to treatment that, when applied to stem cells, has proven itself to be unduly burdensome, unreasonably slow, and unbelievably expensive.

Ultimately, what is abundantly clear is that the American people have spoken.  Their voices are filled with pain and they must be heard.  Retrograde stem cell policy is inimical to curing disease and is an affront to the elimination of pain. 

A. Rahman Ford, PhD, is a freelance researcher and writer on the issues of politics, policy and health. 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.

Fed Assault on Pain Patients Continues

By Jane Babin, Guest Columnist

The alphabet soup of federal agencies continues their full-frontal assault on pain patients and the opioid “epidemic.”

On Tuesday, the DEA raided the offices and home of Dr. Forest Tennant, an outspoken critic of federal efforts to regulate opioid prescribing.

Last week the DEA finalized plans for another 20 percent cut in the supply of opioid medication, apparently acting at the behest of 16 U.S. senators.

And this week FDA commissioner Scott Gottlieb declared a public health advisory over the increasing use of the herbal supplement kratom, telling people they should use FDA-approved medications instead. 

Well, Dr. Gottlieb, people don’t have access to the FDA-approved pain medications they need and it’s getting worse each day.  Fewer people might look for alternatives for their pain and/or addiction if they were treated adequately, with the dignity and respect they deserve, and without mistrust, denigration or a pound of flesh.   

I’ve never bought into the narrative that the opioid “epidemic” was caused by prescription drugs or that the inevitable consequence of opioid pain treatment is addiction. 

The problems are far too complex to assign blame to any one factor, person or group, and the simplistic solution of cutting opioid prescriptions flies in the face of not only my own experiences with opioids, but also that of millions of Americans with acute or chronic pain, and scores of respected pain specialists.

I was incredulous when the CDC proposed “voluntary” opioid prescribing guidelines in the dark, with a secret panel of wholly biased “experts,” most never having treated a patient for pain and perhaps never even being in the same room with one.  I was even more outraged when it assembled a new CDC-friendly review committee and utilized a puppet scientific advisory committee to rubber stamp their approval.  

After reports of fentanyl-related deaths appeared in the media, my reaction was two-fold: 

1. This explains the surprising surge in deaths of regular heroin users who are usually adept at managing their doses to avoid overdosing.
2. This couldn’t solely be due to the diversion of prescription fentanyl, because it’s not easy to steal large quantities of transdermal patches and redistribute the fentanyl to heroin and pills. 

Then, when carfentanil and other fentanyl analogues emerged, I thought the DEA, CDC and FDA would have to acknowledge that the “epidemic” wasn’t a prescription drug epidemic, because carfentanil isn’t prescribed to humans and is very tightly controlled.  I was wrong.

What is even more concerning is their dogged refusal to consider the complexities of opioid addiction and alternative explanations for many opioid overdoses.  If a person dies with a combination of alcohol, heroin, benzos, meth, and a trace of the Vicodin they took three days ago in their system, does that make it a prescription opioid death? 

Yes, according to CDC analyses.

Seeking Answers

I wanted to know how the CDC's distinguishes between a prescription opioid death and those caused by  incorrect coroner determinations, polypharmacy, counterfeit drugs, history of drug abuse, and even deaths from severe pain. 

So I wrote to Deborah Dowell, MD, co-author of the CDC guideline and lead author of a recent article published in JAMA, which analyzed underlying factors in drug overdose deaths. 

In that paper, Dowell acknowledges that “although increased heroin use and risk taking likely contribute, available data suggest contamination of the heroin supply with illicitly manufactured fentanyl as the overwhelming driver of the recent increases in opioid related overdose deaths.”

Which made me wonder what data was “available” and why they would need to qualify their conclusions.

deborah dowell, md

“There are limited data about the effectiveness of interventions to prevent overdoses related to illicitly manufactured fentanyl,” Dowell explained. “However, interventions that reduce opioid use disorder and opioid overdoses are likely to reduce overdoses related to illicitly manufactured fentanyl. Unnecessary exposure to prescription opioids must be reduced to prevent development of opioid use disorder in the first place.”

Ah ha! So fentanyl is bad and they aren’t sure if they can save people from overdosing on fentanyl, so they want to target prescription opioids instead. Because, of course, all pain patients who take opioids inevitably develop opioid use disorder (at least they do after the American Psychiatric Association rewrote the definition of addiction.  

I emailed Dowell and asked the following questions about her analysis of opioid deaths:

• How many different drugs did the decedents have in their bodies at death? What was the numerical range and average number? If other drugs were found, what were they?
• How many had a verifiable diagnosis or history of addiction? How many had a history of receiving opioid prescriptions for pain and for how long?
• Do prescription records validate a conclusion that the drug causing or contributing to death was a prescribed opioid?  
• Were all causes of death considered, or was a death concurrent with detection of opioids presumed to be an overdose?
• In how many cases were police or coroner's findings considered and found consistent with the cause of death reported on the death certificate?

The response I received was astonishing.  Less than 8 hours after emailing Dowell, I received a message from CDC’s Office of General Counsel.  I had struck a nerve! They saw I was a lawyer and thought I was preparing for litigation.

After clearing my questions with CDC’s legal team, Dowell replied a week later.  Her response should send a shiver down the spine of any pain patient who has been denied opioids, titrated down, or dismissed by his or her physician: 

“The reality is that many of the answers to these highly specific and technical questions cannot be answered in a definitive manner based on available data.” 

The bottom line is CDC does not have a grip on what’s really happening. CDC is targeting pain patients who are increasingly tortured by a medical profession scared silly by investigations and law enforcement. Yet they press on, with very little effect, continuing to blame prescription opioids and pain patients as the root cause of the opioid “epidemic” they aren’t responsible for.

The failure of the federal government’s efforts, particularly since the CDC guideline was issued, creates a justification to double down – no opioids for chronic pain and fewer opioids for acute pain -- all because pain never killed anyone and so there is no harm in forcing patients to suck it up.

The reality is that they can’t fix a problem they won’t acknowledge or attempt to understand, and they don’t have the data to understand it.  They can’t manipulate data to support an agenda and then expect solutions based on faulty conclusions to ever reach a desired end. 

Until they acknowledge what the real problems are, they will never solve them.

Jane Babin, PhD, is a molecular biologist and a biotechnology patent attorney in southern California. Jane has worked as a consultant for the American Kratom Association, a pro-kratom consumer group.

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.

The Death of Pain Management

By Janice Reynolds, Columnist

The art and science of pain management is more than just opioids.  It is knowing what pain is and how pain works, the harmful effects of pain, different reasons for pain, how individuals react differently to pain, which medications may work and how they work, what non-pharmacological interventions may be appropriate, the difference between “acute” and “chronic” pain, understanding that guidelines are not written in stone, and the importance of listening to the patient and treating the whole patient.

While many physicians, nurses and pharmacists may not know all of this, they should be willing to research it or ask for help from someone who is knowledgeable.  Above all, it requires compassion, belief and faith in the patient.  It’s complicated, but that is why I call it an art and a science.

There have always been those who are bigoted against people in pain, do not believe pain is all that important, and that people need to gut it out. They’d rather 1,000 people suffer in pain than be fooled by one. They see pain management as a money-making endeavor.

Others take the values of beneficence (doing good), non-maleficence (not doing harm), veracity (truth telling), and equable justice (all are treated fairly) seriously, and don’t try to warp these ethical values to support their own beliefs.

Unfortunately, the tide has turned against pain sufferers and pain management providers, and they are being overwhelmed with falsifications and even hate. Some would cite the so-called “opioid epidemic” as the cause, and while it has certainly acerbated the problem, the seeds were planted long ago.

What this “crisis” has done is escalate the terrorism of the DEA by driving providers out of pain management or punishing those who still treat pain. There has been a lack of due process, with providers found guilty until they can prove themselves innocent, damned by innuendo, and with no thought or care for the collateral damage to their patients.

The media and anti-opioid zealots have also made claims that pain management experts are all tools of the pharmaceutical industry and anyone who advocates for appropriate pain management is spreading lies.

The crisis in pain management can be traced back, in part, to the Joint Commission’s accreditation standards for pain.  Healthcare organizations were first held accountable to them in 2001.  My friend, Dr. June Dahl (a professor of pharmacology) and Dr. Patricia Berry (a nurse) wrote the initial standards.  Our belief was these standards would “make pain visible” and pain would no longer be ignored.

The standards essentially said that healthcare organizations should have a plan to assess the presence of pain, that pain should be treated, and that providers should be educated on pain and pain management. This turned out to be wishful thinking.  Negative comments we heard included variations of “If you ask them about pain they will have it” or “People will only exaggerate their pain.” My favorite one (asked by an emergency room doctor) was “Do you really think this pain thing is all that important?”

Dr. Andrew Kolodny and Physicians for Responsible Opioid Prescribing (PROP) have also had a huge impact on pain management. Seldom mentioned is the fact that PROP is a small group with only a handful of practicing physicians. Many, like Kolodny, have links to addiction treatment centers.

When the FDA wouldn’t go along with a PROP petition to change opioid warning labels, PROP found a home at the Centers for Disease Control and Prevention, where they helped draft the CDC’s opioid prescribing guideline. The guideline has severely damaged pain management by forcing providers to essentially ignore pain and commit malpractice. PROP has done more to murder pain management than any other entity.

Another large contributor to the death of pain management is the use of McCarthyism to spread fear and innuendo.  Doctors are afraid to provide appropriate pain management either because of the CDC guideline or a realistic fear of the DEA.  Providers are abandoning pain management or leaving practices entirely. Nor can they be faulted, as there is little support for them by politicians, the government or the media.  Even professional medical organizations, such as the American Pain Society, American Society of Anesthesiologists and American Academy of Neurology, have abandoned them.

Now we are seeing a bastardization of pain education, as well as a debasing of pain management itself. Education in medical schools and continuing education for providers should center on pain syndromes, pharmaceutical interventions, non-pharmaceutical therapy, and the consequences of poorly managed pain.  It should be evidence based, as well as ethical, and should not include the CDC guideline, which is neither. It should not just focus on addiction or the evils of opioids. 

There are now efforts to standardize pain management through the development of “best practices.”  President Trump’s opioid commission, the VA, Medicare, and other government agencies are creating them with input from addiction treatment advocates and insurance payers, without input from pain management experts or people in pain.

Will the art and science of pain management survive these assaults? I certainly want it to. But it will be difficult to re-educate providers and bring back into practice those who have been persecuted by the DEA and the media.

The narrative needs to change. We need to refocus on the harmful effects of inadequate pain management, the maltreatment of people in pain, and what forces are behind this butchery of adequate pain management.

Pain management, according to the World Health Organization, is a human right.  What kind of world and country do we live in when this right is blatantly ignored and the health of many placed in jeopardy by the death of pain management?  

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on pain management, and is co-author of several articles in peer reviewed medical journals. Janice has lived with persistent post craniotomy pain since 2009. 

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.

Managing Emotions While Living with Chronic Pain

By Barby Ingle, Columnist

Before navigating through the minefield of the healthcare system, we need to get our own lives in order first.

It is important to learn the tools to manage chronic pain in a biological, psychological, social and spiritual approach. This can be quite tricky to do, if you don’t put effort into each area.

The one area most skipped over is the psychological challenge that comes with living in chronic pain. One of the things that negatively affected my healthcare was not having my emotions under control when going into a doctor’s office. I would go in expecting them to fix me and answer in broad sweeping terms that did not help them help me. I would typically cry, because I was in so much pain and trying to get someone else to understand was quite a challenge.

There were five major areas psychologically that I worked on: managing my conditions, avoiding peer pressure, figuring out tools that I was comfortable with, respecting the roles of everyone involved in my care, and setting expectations with my family and friends.

Once I became my own best advocate and learned to present my symptoms in ways that helped them understand, I finally started down the path to a team approach to managing my pain.

The first step was getting my emotions under control and taking responsibility for what happens between appointments. That meant making sure that I was organized, learned about my diseases and treatment options, and understood how my insurance worked. Getting organized really helped me get my emotions under control, let go of anxieties, and focus on maximizing my care and energy.

I also learned each provider has their own way of treating pain, and if that provider was not on board with me, I’d find a new one who was willing and able to help me accomplish my goals.

Avoid Peer Pressure

You may face some peer pressure from others in the pain community to try whatever they are doing. Remember to research and only do what you are ready to do for yourself. If it’s not right for you, then it’s not right for you. The stress of allowing others to pressure you into trying a treatment that you are not comfortable with can create a bad situation for you.

Don’t be misguided by the pressure to fit in with others who have the same disease as you. Be sure to stand up for yourself and the care you deserve.

Take Responsibility

We are taught from childhood that doctors fix sick people. Providers and parents make decisions for us about our medications and treatments. But as we age, it is important to learn that we are responsible for our own care, and to think through and develop our own solutions. This is an essential life skill for everyone, but when you are chronically ill it is even more important to develop.

Respect that pain takes a toll on us physically and emotionally, and that we must devote time, effort and energy to improve our living situation and be as mentally healthy as possible. So many times, I wanted to scream or have a tantrum. Can’t they hear me? Can’t they help me? Can’t they do something for me?

Finding more positive ways to say what I was going through and productive ways to communicate helped me get the best care possible in the worst of situations. No one helped me when I let my negative emotions lead me. I have learned to respect myself and others to get the care I need, know when to walk away, and when to find a better way.

Set Expectations Early

Most of my family understood that I was living with chronic pain and that it was not by choice. But not all of my husband’s family understood, and took the word of a nurse who said that I was acting up, looking for attention and nothing was wrong with me. Over the years most of them have come around, after I learned to be patient and stay consistent in my drive and determination.

I have only had to cut a few people out of my life and most of that happened because I was unable to set expectations. Now it is something I have learned to do at the start of any relationship. There is so much less frustration when I have to say sorry I can’t make it because of a pain flare or seizure. They know I want to be there, there just are times that my body doesn’t allow it.

Having chronic pain will challenge you in ways that you never imagined. Preparing for daily activities and pain flares becomes a must. So does searching for small ways to boost your own self-confidence.

Managing the emotional side of chronic pain can be done -- it just takes understanding, effort, and learning to choose your battles.

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.

Panic! At the Toilet: Dealing With a Panic Attack

By Crystal Lindell, Columnist

When I read the notes from the paramedics, I couldn’t help but laugh.

“Pt. was sitting on toilet. Began to hyperventilate,” they wrote.

I finally found a title for my future autobiography! Hey, it’s my panic attack. I can make jokes if I want to.

The whole thing happened about a week ago and, as you can tell by the notes from the EMTs, it happened while I was going to the bathroom. There aren’t a lot of good places to have a panic attack, but I can tell you from experience that the toilet is an especially bad one.

Nothing brought it on. I had literally just woken up. And I was in the middle of a text conversation with my best friend about how insanely expensive humidifiers are when it hit.

It’s not as though I was contemplating the meaning of life or freaking out about the idea of being single forever, or even thinking about our current president any more than usual. I was literally just trying to find the best way to wake up without dry sinuses.

For the lucky ones out there who aren’t aware of what happens during a panic attack, let me explain.

The first thing to know is that the whole thing is scary as hell. If you don’t know what’s happening, you might think you’re dying. As in, this is it. This is how it all ends. On the toilet. Like Elvis.

It starts with this weird urge to hyperventilate. For no reason. Literally. No. Reason. That, in turn, causes chaos.

I started screaming. Then, sweat suddenly drenched my entire body. And soon after that, things started to shut down, as my body rushed blood to the most important areas, like my heart, assuming extremities were expendable. So, my feet and then my calves went numb and then they started cramping. My hands curled under and stopped functioning. And eventually my tongue also went numb.  

Saying it’s really effing scary is an understatement. 

Thankfully, my brothers were both home and heard me screaming. When they came to check on me, I mumbled with my non-functioning tongue that I needed them to call 911. I live two doors down from the fire department, so the paramedics got to my house pretty quickly. That was helpful. 

And, I have to say, they were insanely good at dealing with the situation. 

One of them rushed in and knelt down in front of me, grabbed my hands, looked me in the eye and said, “Crystal, what’s happening to you is completely normal. I need you to try to breathe with me.” And then he guided my breaths while another paramedic got some oxygen ready. Once they put that on me, I was able to regain function in my limbs again. My hands slowly started to uncurl and I was able to kind of calm down. 

That’s about when I also regained the wherewithal to really understand exactly what was happening. Three young paramedic guys, in my bathroom, helping me breathe, while I sat on the toilet, in a T-shirt and hot pink underwear wrapped around my ankles. 

I’ve had better moments. 

I declined to go the hospital mostly because I knew that I would be ok after I calmed down. But it’s likely I had such a severe reaction because I was dehydrated, and IV fluids probably wouldn’t have hurt. Instead, I just drank some Gatorade.

Afterward, I was completely drained of energy and ended sleeping the rest of the day. I can tell you that I also have spent every day since genuinely concerned that I would have another panic attack any time I went to the bathroom. So that’s fun. 

And honestly, I have been struggling to process the emotional trauma of losing control of my body. Just writing this column, and remembering everything that happened, has been enough to make my heart race with fear. But I am seeing my psychiatrist in a couple days to talk about future coping strategies, so hopefully that will help.

I know this is the “Pain" News Network, and I struggled with whether I should write about a panic attack in this space. But panic attacks are really painful in lots of ways, and many people living with chronic pain also deal with anxiety. 

And I while I had one 7 years ago, I didn’t actually know that it had been a panic attack until I heard one of favorite YouTuber beauty bloggers describe something similar happening to her. I was like, “Oh, wow. That’s exactly what happened to me!”

And I can tell you that the most important thing to realize during a panic attack is that it is just that: a panic attack. Because a stroke or heart attack seem pretty similar. And thinking you’re going to die doesn’t help calm you down. So maybe this article will help someone else who unexpectedly finds themselves hyperventilating on the toilet someday. If nothing else, it’s a good reason to clean your bathroom. 

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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.

A Pained Life: Help Us Help America

By Carol Levy, Columnist

I had a friend who was diagnosed with lung cancer. We were all afraid for her. Not only because we feared for her life, but because of all the horrors we hear surrounding treatment for cancer.

She had surgery and a part of one lung was removed. When I spoke with her after surgery, I hesitantly flirted around the edges of the question: chemotherapy, radiation, how awful will it be for you?

My worries were unwarranted. Her answer was completely unexpected.

"I don't need anything else,” was her reply. “My doctor said, ‘You had cancer. Now you don't.’”

Wow. What strides they have made against this horrendous disease.

There is no question how feared cancer is, how dreadful the disease is and the possible repercussions -- from the cancer itself or as a result of the terrible treatments used against it.

The federal government throws huge amounts of money at cancer research and new treatments. As they must. Cancer scares everyone. It must be eradicated, if at all possible.

Cancer also costs the economy. Treating cancer in the United States cost nearly $125 billion in 2010 and is projected to reach $156 billion in 2020. The government would be accused of malpractice if they ignored this life and money devouring monster. And they don't. That is one reason my friend had it and then she didn't.

 What is the economic impact of pain? Between $261 and $300 billion annually in healthcare costs alone. Add in lost works days and productivity, and the tab reaches $635 billion.

Estimates vary, but according to the American Academy of Pain Medicine, 76.2 million Americans have chronic pain, compared to 20.8 million with diabetes, 18.7 million with coronary heart disease and stroke, and 1.4 million with cancer. In other words, chronic pain affects more Americans than diabetes, heart disease, stroke and cancer combined.

So why is chronic pain ignored? Why do we continually have to fight for the dollars to fund research and development of new treatments? The National Pain Care Act languished in the U.S. Senate for many years with no action taken. Under the Affordable Care Act (Obamacare), it was finally incorporated as an amendment that calls for more pain education of physicians, and more dollars for pain research and the development of new treatments.

So where are the dollars? Where is the research? Where are the new treatments?

So far, they seem nonexistent. Instead, the one option that many pain sufferers have – opioid medication -- is being taken away. We are the whipping boys of the “opioid epidemic.”

Many of us have been helped by opioid medication. Some are less disabled by pain. Some are helped enough to continue working and pay taxes, reducing our drain on the economy.

This should be celebrated and expanded, by giving us access to medications that provably help, at least until other treatments become available. But instead of assisting us in improving our lives, the government is giving us policies and “guidelines” antithetical to helping the chronic pain community. The consequences of these dreadful policies – higher healthcare costs, more disability, lost quality of life, and suicide -- are being ignored.

Is that because it makes for better headlines when politicians scream about the so-called opioid epidemic?

There is no doubt there is a big problem with the overuse, abuse and illegal use of narcotics. But we are not the bogeyman in this fight. Less than one percent of opioid medication that is legally prescribed falls into the wrong hands.

If they truly wanted to help the country, they would look seriously at the consequences of making us the bad guys. Many of us who were doing better as a result of opioids have been forced to reduce our dose or are no longer able to get a prescription. It’s not saving lives and it’s not preventing addiction. Look at how the overdose numbers keep rising. This is a benefit to no one. Not for us as individuals or to the country as a whole.

Our pain is invisible, but so too are cancer, diabetes, heart disease and many other conditions. Insulin is okay. Statins are okay. Chemotherapy is okay. Opioids are the devil.

The devil, as they say, is in the details. And the details are very clear. Opioids help pain patients. They allow us to help the country. We keep looking for a way in, to make our voices heard. Maybe we should make patriotism our rallying cry. When you hurt us, you hurt the country. Help us help America.

Until the government, DEA, CDC and politicians can find other ways to reduce or even eradicate chronic pain, take us off your list of opiate abusers.

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.

I Am a Casualty of the War on Drugs

By Lorelei Bryan, Guest Columnist

I am a 51 year old wife, mother, grandmother and businesswoman, among other things.  Along with all of those other titles and roles, I am a person who lives with chronic pain.

I do not like the label “chronic pain patient,” as it carries with it more stigma and derogatory implications than ever. 

In 2010, I began to experience extreme pain near my left ear.  Suspecting an ear infection, I went to my primary care physician. After examining me and asking a lot of questions, he said I had no infection and that he suspected this was related to the temporomandibular joint (TMJ) in my jaw. Like most people, I had heard of TMJ and thought it was the result of grinding or clenching my teeth. A visit to my dentist confirmed that there was no evidence of grinding or clenching.  He was at a loss. 

Thus began my two year journey of one oral surgeon after another, one therapy after another, and one failed surgery after another, trying to get this condition resolved. All the while, I battled between the primary care doctor and the surgeons on which of them was going to write the pain medication prescriptions I needed to keep functioning throughout this ordeal.

Finally, after two years and seven surgeries of various types, I was referred to an oral surgeon who specialized in TMJ patients with advanced and rare conditions.  A cat scan revealed that arthritis had destroyed almost all of the bone structure in my jaw.  I had to have two more major surgeries; one to remove what was left of the diseased bone and the second to install custom made titanium jaw parts.  

LORELEI BRYAN

The surgeon warned me that the procedures would restore function to my jaw (I could not open my mouth more than a few millimeters), but that I may be left with chronic pain.  He was right on both counts. The combination of the multiple surgeries, scar tissue, damage to the surrounding structure, and permanent nerve damage left me with severe chronic pain from trigeminal neuralgia that will never improve. 

During the final two surgeries, I was working with a pain management specialist who knew my surgeon.  All was well, as they communicated regularly and I was receiving pain medication that allowed me to manage my pain to the point of having a relatively normal life, although not completely pain free. 

In 2014, 18 months post replacement surgery. I received a letter from my pain management doctor explaining that he was no longer treating pain patients. No additional prescriptions would be given to any patient and no referrals to other doctors or pain clinics would be provided.  Just like that, everyone he treated for pain was dropped. Of course, I panicked, as I’m sure many of his other patients did. Being dropped by a doctor for no reason and with no support for transitioning to another provider feels like betrayal.

I sought help from my primary care provider and, fortunately, he said he could treat my pain himself. I was very relieved and grateful to him.  For three years he and I worked together to manage my chronic pain, including the trigeminal neuralgia that the surgeries caused. We were able to use a combination of Tegretol and oxycodone that reduced my need for oxycodone by 20mg per day, as compared to the dose I was on with the pain management specialist.

Never before had my pain been managed to the point it was.  He and my pharmacist know each other well, and the three of us worked together to manage my pain.   

The War on Drugs Targets the Wrong People

Fast forward to June 2017.  I go in for my every other month appointment with my primary care provider. He does his exam, we talk about my other medical issues, and then he gets a grave look on his face.  “I can’t write the oxycodone for you anymore,” he says. 

I am thrown.  He explains that the state has instituted strict limits on who can be prescribed narcotic pain medication and very strict limits on the amounts. I couldn’t breathe. Thoughts of what life would be like without having my pain effectively managed ran through my head -- reduced job performance, reduced job attendance, possible job loss, checking out of the lives of my children and grandchildren, suffering and crying all day like I used to. 

When I gained a little composure, I said, “We are talking about my quality of life here. I know why this is happening. This so called ‘war on drugs’ is creating a war on the wrong people.” 

My doctor agreed that I am a model pain management patient, a “poster child” for the appropriate use of narcotic pain medication. I see only him. I use only one pharmacy and he knows the pharmacist personally. I take the medication according to directions. I do not doctor shop. I do not ask for early refills.  I follow all the rules and still I have to suffer, so that a bunch of bureaucrats who have no right getting involved in what my healthcare provider deems appropriate for me, so they can pat each other on the back and congratulate each other for “striking a blow in the opioid crisis.”  

When I put it that way, the doctor agreed that I was a prime example of a responsible patient who needs this medication and is not a high risk. He agreed to continue writing the narcotic pain medication prescriptions, but explained that new state laws meant we had to almost cut my dose in half. 

I am now trying to manage on much less medication. The increased pain level makes it difficult to concentrate at work. It has made me withdraw from my husband. And it has impacted my ability to be the mother and grandmother I should be.

These bureaucrats and politicians are causing needless suffering for thousands of people in pain, while doing virtually nothing to stem the heroin overdoses that are the prevailing reason for the opioid crisis in the first place.

Is there a serious issue with abuse and addiction to narcotic pain medication?  Of course there is, and something should absolutely be done to address it.  But taking away medication needed by people in chronic pain is not the answer.  Limiting or denying medication to legitimate patients who need it to live and function with any quality of life only creates another crisis. More and more people turn to illegal drugs or, worse yet, commit suicide because their medication has been taken from them and they cannot endure without it.

My question is this: where is our voice?  For all of the politicians and celebrities speaking out on the war on drugs, who is speaking out on the other side of this?  If someone of consequence and influence does not speak out for people in pain, these new laws and limits will create just another silent epidemic and the war on drugs will take more lives than ever.

Lorelei Bryan lives in Virginia.

The Virginia Board of Medicine recently adopted emergency regulations that require doctors who prescribe more than 120mg morphine equivalent (MME/day) to a patient to document the justification for the dose or to refer or consult with a pain management specialist. It does not expressly forbid doctors from prescribing more than 120 MME/day.

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.

Can Marijuana Improve Your Sex Life?

By Roger Chriss, Columnist

A new study by researchers at Stanford University, published in the Journal of Sexual Medicine, shows that marijuana use is associated with greater sexual frequency in both men and women. There has been a lot of enthusiasm about the findings, but relatively little understanding of what the research actually says.

Marijuana has intriguing medical potential, from symptom relief in terminal cancer patients to pain management in chronic conditions. And the possibility that it may improve sexual function is enticing in particular for people with health problems. Thus, it’s important to understand what any new results are really saying. So let’s use this paper as a case study on how to read a research paper.

We start with the study methodology. Because the gold-standard of a double-blind placebo-controlled randomized prospective trial is not possible with marijuana, the authors had to engage in data mining, the process of using an existing data set to ask new questions.

For a data source, the study uses the National Survey of Family Growth (NSFG), a large database assembled by the CDC. The study results were drawn from an analysis of 28,176 women (average age = 29.9 years) and 22,943 men (average age = 29.5).

It is important not to be impressed by these large numbers. Increasing a sample size beyond a certain point offers no additional reliability, and it may create more problems with confounding variables and hidden biases. Because the authors did not assemble this data themselves, there was no way for them to address these issues.

A sanity check of the data is the next step. This study looks at sexual frequency at various levels of marijuana use. A check of the International Encyclopedia of Human Sexuality shows that “on average, men and women engage in sexual intercourse approximately six times per month.”

This is consistent with the Stanford study findings, but with a caveat: recall of the previous month’s sexual activity or marijuana use may be imperfect. Some researchers try to get around this problem by having participants keep written logs or by using apps, but this study did not.

It is also important to keep in mind that the study variable of sexual frequency is an imperfect number. You cannot have sex 0.73 times!  Any change in sexual frequency has to occur in increments of one per unit time. In this study, the unit time is a 4-week period. The increase reported in the study represents the smallest possible increase, or one additional sexual event. The authors found that regular marijuana use was associated with one more sexual event every four weeks.

The study mentions the use of the NSFG data as a limitation. The authors note that “survey responses were self-reported and represent participants only at a specific point in time.” But there is a deeper issue here. As noted above, the data set may contain flaws, biases, or other issues beyond the control or even the awareness of the authors. Formally speaking, randomness is lost. In election polls, for instance, pollsters follow strict protocols to ensure randomness because doing so makes for more reliable results.

In practice, large data sets often contain many associations because life is complicated and even seemingly simple activities like sex are subject to a variety of influences. So posing questions to large data sets requires caution, or as statisticians sometimes say, “give me a large enough data set and I can prove anything.”

The Stanford study’s conclusion is that a “positive association between marijuana use and sexual frequency is seen in men and women across all demographic groups.”

But in an interview with The Washington Post, the authors qualify that by noting that the study “doesn't say if you smoke more marijuana, you'll have more sex,” appropriately warning that correlation is not causation.

Spurious Correlations

But the mantra of “correlation does not imply causation” is simplistic. In reality, association does not even imply direction. It is equally reasonable here to say that greater sexual frequency is associated with increased marijuana use. But changing the word order alters the implication.

The second problem is that the association may be meaningless, an artifact of our data-rich world. Such spurious correlations can even be a source of entertainment. For instance, coital frequency may be correlated with living in an even-numbered zip code or marijuana use may be associated with banana slug activity.

Not to make light of overdoses, but there is even a spurious correlation between deaths caused by opioids and the price of potato chips:

SOURCE: TYLERVIGEN.COM

These associations could be tested, but a positive result would probably not get the kind of media attention the Stanford study is receiving.

Moreover, sexual activity is influenced by a wide range of factors. It is possible that regular marijuana users have a lifestyle more conducive to sex, making lifestyle a lurking variable that affects both sexual frequency and marijuana use. Or it may be that daily marijuana users have more disposable income, more time to enjoy the effects of marijuana, and a more drug-tolerant work situation. In this case, marijuana use would act as a proxy for other potentially causal factors that influence coital frequency.

Because these issues are always found in large data sets, the potential for finding meaningless associations is ever-present. Or as statisticians say, “if you torture the data enough, you can get it to confess to anything.”

Thus, a study of this nature has inherent limitations that mean its results must be interpreted with caution. As the authors note in their conclusion, “the effects of marijuana use on sexual function warrant further study.”

So our final task is to consider what would constitute further study. Obviously, this result needs to be confirmed, ideally with a prospective study that controls for confounders. If the result is reproduced, then the hard work of identifying the causes begins. Once identified and confirmed through human testing, then and only then can we say that marijuana increases sexual frequency. For now the best we can do is read such studies with care and caution.

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.

How Rx Opioids Helped Me Work Again

By Kate Nicholson, Guest Columnist

I recently told 2,200 intimate listeners during a TED Talk how a surgical error left me in severe pain, unable to sit or stand, and largely bedridden for almost twenty years.

I also explained that with appropriate pain management, including treatment with opioids, I continued working as a high-level federal civil rights prosecutor despite my physical limitations. I won important arguments in federal court, arguing from a folding lawn chair. I drafted the current regulations under the Americans with Disabilities Act (ADA), coordinated with the White House, and supervised thousands of cases by hundreds of attorneys across the country from a computer screen and well-camouflaged bed.

And when my pain finally improved, I stopped taking opioids.

A part of me was not eager to go public as someone who used opioids, for the same reasons that I was initially reluctant to take opioids for pain. Opioids carry a stigma, one that is only increasing today in an era of opioid abuse.

The increase in prosecutions and the oversight of physicians, and the difficulty people in pain today experience in getting appropriate pain medication motivated me to tell my story.   

My story of pain began 23 years ago. I was working at my desk in the Civil Rights Division of the U.S. Justice Department, putting the finishing touches on a document due to court, when my back started to burn. It felt like acid eating my spine. My muscles seized and threw me from my chair.  As I curled on the floor, my body seared with pain.

Over the coming days and weeks, the pain only intensified. Any postural compression on my spine caused electrical and burning sensations to escalate like an alarm that grows louder and louder.

At the age of 30, just a few years out of Harvard law school, I could barely stand and sitting was impossible. So, I began to conduct my life lying down. For a while, I was able to commute, lying across the backseat of a car to work from a futon on the floor of my office, using a walker to get from place to place. Then for many, many years, I was entirely bedridden.

Two things allowed me to maintain a life under these circumstances. The first is that I happened to be working in one of the few jobs that would accommodate me. When my pain began, I was enforcing the ADA, a civil rights law that protects the rights of individuals with everything from multiple sclerosis to cancer to HIV disease.

The second and more critical factor was my access to good medical care. My pain began in the 1990s, when the pendulum on pain swung decidedly in the opposite direction of where it is today.  I had access to the best doctors and to treatment at a pain management clinic. My physicians tried all sorts of treatments, from lidocaine infusions and directed injections, to nerve ablations and a surgery to separate nerves from adhesions. Nothing restored my mobility or diminished the pain.

Early on, I refused to take opioids.  I was worried about addiction and stigma.  When my doctors initially approached me about taking opioids for pain, I was, at first, devastated. I felt like they were giving up, that I was being put out to pasture.  But I had exhausted my available treatment options, so I relented and underwent psychological screening to determine if opioids were appropriate. 

As soon as I took opioids, I improved. I wasn’t foggy or especially euphoric. In fact, the opposite happened, space opened in my mind and I could work again.  I also never developed a tolerance, requiring more medication for the same level of pain relief. 

Opioids did not heal me. Integrative treatment over a long period of time did.  But opioids gave me a life until I could find my way to healing. Importantly, they allowed me to continue to work.  

I understand that opioids are complicated. People are different. I also recognize that as a public health matter, the interests of treatment must be balanced against the potential for abuse.  But today we have no such balance: our media attention and public policy focus singularly on abuse.

Serious physical pain needs to figure into the conversation, especially since severe or persistent pain affects 25 times more Americans than opioid abuse.

I worry that we are throwing out the baby with the bath water. By focusing on a single substance, we are not addressing the root causes of addiction.  By placing undue pressure on physicians and the doctor-patient relationship we abandon people in severe pain, many of whom could contribute and lead productive lives, to their suffering.

Kate Nicholson lives in Colorado. She served in the Civil Rights Division of the U.S. Department of Justice for more than 20 years, practicing health-related civil rights law and securing powerful victories including in the U.S. Supreme Court. 

Kate is currently writing a book about her personal experiences with severe chronic pain. She can be reached through her website at www.katemnicholson.com. 

You can watch Kate's TED Talk below:

Should You Tell an Employer About Your Chronic Pain?

By Lana Barhum, Columnist

Telling your boss or a potential employer about your chronic pain condition can be slippery slope. 

If you disclose it, you may wind up dealing with judgments and misguided attitudes from supervisors and coworkers about the extent of your chronic pain. On the other hand, if you don’t disclose it, you may miss out on accommodations you need and are entitled to.

There is always going to be risk when you disclose. And it is hard to know whether an employer will be accommodating or treat you unfairly.   

You do have rights as an employee and a person living with chronic pain. You should know what they are before you decide whether to disclose.

You Do Not Have to Be Visibly Disabled

Many people who live with chronic pain don’t consider themselves “disabled.”  Even so, they may still qualify for accommodations under the federal Americans with Disabilities Act (ADA).

The ADA defines a person with disability as someone who has “a physical or mental impairment” that significantly alters one or more major life activities. You may have trouble sitting, standing or walking, for example. The key is whether the limitation is substantial

It is important to note the ADA’s definition is a legal one, not medical. And because it is a legal definition, the meaning of disability is different than it would be under other laws. The ADA doesn’t list all the covered conditions, which gives some flexibility to people living with  non-specific chronic pain; which is pain that lasts longer than three months, but has no specific medical cause.

For example, you could have joint pain from rheumatoid arthritis, while someone else’s back pain may not be related to a specific event or health condition. It doesn’t make the other person’s pain any less valid than yours or diminish their need for job accommodations. Back pain would still be considered an impairment.

You Do Not Have to Disclose When Job Hunting

The ADA does not require you to disclose your medical conditions when interviewing and applying for jobs.  However, the employer is allowed to ask questions about whether there is anything that could prevent you from doing the job required. 

They may inquire about medical conditions and request a medical exam, but only if they are doing this with all their new hires and being in good physical health is a requirement to perform the job.

You Do Not Have Disclose When You Start a New Job

If you didn’t disclose your condition while interviewing or when you started the job, you can still ask for accommodations later.  You have the right to ask when the need arises.

If you request an accommodation, an employer is allowed to ask for a reasonable corroboration of your need for one,  such as a doctor’s letter. You can disclose what you want about your medical condition and it doesn’t have to be everything.

You Can Disclose on Your Own Timetable

You are under no legal obligation to tell anybody at your job about your chronic pain.  Your employer also does not have any legal right to request this information from you; unless it involves health and safety obligations they are required to meet.  

It is your decision when and if you want to tell your employer, ask for accommodations and/or share with your co-workers.  You never have to let anyone know if you don’t want to.

Should You Disclose?

If you believe chronic pain affects your ability to do your job, think about the ways it does and what solutions there might be.  For example, are you leaving work often for medical appointments? Would a flexible schedule or working from home one day a week help your situation?

Or could you benefit from other tools that make it easier to work, such as an ergonomic workstation?  Keyboards, mice, office chairs, standing desks and other ergonomically designed tools are increasingly being used in the workplace because they reduce the risk of back pain and other musculoskeletal disorders. 

A good resource where you can find examples of accommodations for specific medical conditions is the Job Accommodation Network.

Things May Not Go as You Plan

If you choose to disclose, you may not get the response you want. Your employer is prohibited by law from terminating you based on your need for accommodation.  However, they might find other ways to get rid of you or retaliate, such as changing your work schedule or denying you a promotion.

They’re taking a big risk if they do. Any form of retaliation when someone asserts their rights is illegal under the ADA. The question will be -- can you prove it? Always keep good records and notes about your communications with an employer about your medical conditions.

Your employer can deny your request for a specific accommodation, provided they are willing to accommodate you in other ways.  For example, if your office space is cold and your joints hurt more in that environment, they could deny your request for a space heater due to fire concerns, but offer to move you to a warmer section of the office as an alternative.

The good news is that your employer cannot flat out deny your request for accommodation. They are required to make a good faith effort to accommodate you in ways that make it easier to do your job with chronic pain.

Good Employers Want to Keep Good Employees

There are no easy answers as to whether you should or shouldn’t disclose your chronic pain to your employer. You should do what works best for you and your workplace. A good employer will be motivated to keep you and will do everything to accommodate you. Others may not.

Make sure you are continually updating your resume and your skill-set should you need to look for a new job.

I have been fortunate to work for companies that have accommodated my needs as a person with chronic pain.  They have understood my need for a flexible work schedule, an ergonomic workstation, and to be able to leave work early or show up late after medical appointments. They’ve made it easier for me to be successful at my job.

I know the idea of disclosure can make you nervous, but it may help you get the support necessary to be a better employee.  From my experience, most employers are accommodating and want to keep valuable employees. They know that the best employees are found in comfortable workplaces.

Lana Barhum is a medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, 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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why We Should Keep Those Letters Coming

By Janice Reynolds, Guest Columnist

I have been a pain management and oncology nurse for over 20 years, and have long been a patient advocate.

Eight years ago, I joined the ranks of those living with a chronic pain syndrome (persistent post craniotomy pain), and in the last year spent an ungodly amount of time in acute pain.

As a patient advocate, I have written emails and letters for over 15 years to politicians, newspapers and online media, columnists, and book authors -- usually with poor results. But it is that one letter out of a dozen that makes it worthwhile.

My hometown newspaper, the Portland Press Herald, has refused to print any of my letters or editorials for several years now. I know they had good results when they did, because I would receive letters and calls from individuals thanking me or asking me questions.

Letters to the editor that were published by the Press Herald in response to my letters tended to be on the malicious side. Politicians were defensive or accused me of being wrong. 

I have had responses from two authors. One actually thanked me and said his source was obviously misinformed.  The other was on the nasty side. Her son is an orthopedic surgeon in the Army, and she said he knows what he is talking about – that our military and veterans are nearly all becoming addicts because of their pain treatment! She was a little more conciliatory when I wrote her back, but still didn’t understand why what she wrote was misleading and dangerous, which I found even more scary.

I still owe Stephen King a letter for the misinformation he presented on pain management, addiction and how opioids work in “Under the Dome,” which I recently re-read. Even though the book is fiction, people will believe what they read.

It was my latest email which brings me to writing this. Recently there was a political cartoon which really upset me.  It showed a bottle labeled “opioids” pouring pills onto the U.S. Capitol and nearly covering it.

The cartoon is based on a recent story by 60 Minutes and The Washington Post that was critical of a law that limited the ability of the DEA to go after pharmaceutical distributors.

I looked up the cartoonist – R.J. Matson -- on the Internet and sent him an email.  It basically told the other side of the story and how the current situation is harming not only people in pain but those in the future as well. 

I did use the term “witch hunt” and my analogy of the four pillars of the so-called opioid epidemic: McCarthyism, Fear-mongering, Yellow Journalism, and Bigotry towards People in Pain with a foundation built on Opiophobia.

I received a reply back almost immediately.

“Far from a witch hunt, the United States Congress, at the behest of lobbyists for the pharmaceutical industry, passed legislation preventing the DEA from monitoring opioid abuse in the medical profession and taking action against that abuse,” Matson wrote to me. “The prevention of responsible oversight of the pharmaceutical industry and doctors who profit from overprescribing pain medication is the subject here.

“Do you applaud the Congress taking away the ability of the DEA to do its job?”

Actually, if this happens, I do applaud Congress.  The DEA’s job is to prevent the illicit use of drugs, not to harass providers and patients or make medical decisions for them.

One of the key words in Matson’s response is “overprescribing.” There is no evidence to support this word and anyone who uses it should be deeply ashamed.  You are saying the provider should only prescribe “X” amount to patients and any amount more than that is too much.  If you mean they are prescribing inappropriately, then you should also be ashamed. This is a judgment call between the patient and provider. What knowledge or expertise do you have to say otherwise?

As for the reasons for the law, I seriously doubt it was “at the behest of lobbyists for the pharmaceutical industry.” Pharmaceutical companies are responsible for many wrongs -- like direct to consumer advertising -- but pushing addiction is not one of them.  If Pharma was trying to "behest" anything, it has more to do with the prevention of widespread terrorism the DEA has inflicted on physicians and their patients. 

This is why I believe it is tremendously important to write letters. You may get a response like mine, but at least you got a dialogue going. Here are other reasons: 

• Telling “our” story may help weaken the stance of non-compassion.
• Review facts we know are wrong and point out why.
• Review facts we know are true and why we know this.
• Explain why opioid addiction is a fictional epidemic or has little relationship to prescribed opioids.
• Call people on the use of fictional terminology like “overprescribing." I once read an AP story where the reporter actually wrote, “everyone knows people become addicted by taking opioids for pain.”
• Remind everyone they are only one accident, one surgery, one illness or one disease away from severe acute pain that may become chronic if not treated correctly.  
• Remind everyone of the ethical and moral issues raised by ignoring and undertreating pain.  Medical professionals are required to know them. Should media and politicians be held to lesser standards?

A single letter may cause someone to think and put a crack in the wall of propaganda.  Many more letters may be powerful enough to break that wall down. 

Letters and emails are our strength and hope.  Changing the current situation may seem overwhelming, but to borrow a phrase from a famous World War II poster: “We Can Do It.” 

Janice Reynolds is a retired nurse who specialized in pain management, oncology and palliative care. She has lectured across the country on pain and co-authored several articles in peer reviewed medical journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them.

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.

4 Infusions That Can Help Relieve Chronic Pain

By Barby Ingle, Columnist

I am so excited to finally be to my favorite letter – "I" -- in my series on alternative pain treatments. The “I” stands for infusions.

There are many different types of infusions, but the four I will cover are ketamine, immunoglobulins, lidocaine and stem cells. I have done 3 of the 4, and one of my good friends has done the fourth with great success. So I feel comfortable sharing what I know about infusions based on my personal health journey.

Ketamine

I was afraid of ketamine when I first heard about it. Ketamine was created in 1962, when it was first synthesized by scientist Calvin Stevens at the Parke Davis Laboratories. Ketamine is a potent anesthetic that blocks pain by acting as a N-methyl-D-aspartate (NMDA) receptor antagonist. It can also reset glia nerve cells in the spine and brain.

Ketamine is not appropriate for everyone. For me, I saw it as a chance to reverse the Reflex Sympathetic Dystrophy (RSD) that I had been living with since 2002.  My excitement was great, along with my family’s. My regular treating doctors were not so optimistic about ketamine, but were not discouraging it either.

I began receiving ketamine infusions in 2009. They put me into remission and I continue with booster therapy as needed. I still have flares, but ketamine got me through the biggest challenges of living with RSD. Here is a video of me after my initial infusion treatments, which many find motivational.

Before I started getting ketamine infusions, they wanted me off opioids completely so that my nervous system would reboot better. Research showed that ketamine patients on opioids were not getting the same good results as people who stopped taking them. Since then, I have also learned that opioids also set off glia cells, which is not a good thing for nerve pain patients.

Immunoglobulins

Intravenous Immunoglobulin – known as IVIg --  is used to treat various autoimmune, infectious and idiopathic diseases. One of my best friends, who has multifocal motor neuropathy, uses it to stay functional.

I have not had IVIg yet, but if ketamine didn’t work for me, I would give it a try, insurance permitting. The cost per treatment is between $5,000 and $10,000, so for many it is not an option.

If you have the cash, the FDA has approved IVIg for graft disease and idiopathic thrombocytopenic purpura (ITP). It is also used to treat patients with Kawasaki disease, Guillain-Barre syndrome, and polymyositis/dermatomyositis. I know a number of people who have used it for RSD.

One of the complaints I have heard from friends who use IVIg is that it takes time before your feel any benefits – sometimes days or weeks. If it is a viable treatment for you, there should be some changes in your symptoms and pain levels within 4 weeks.

However, some people do not respond to IVIg and it is very expensive to try just to see what happens. The cost is high because immunoglobulin products come from the pooled human plasma of a thousand or more blood donors, who have to go through an extraction process themselves before it can be processed and ready for use in infusions.

Stem Cells

Stem cell research could pave the way for an entirely new approach to chronic pain that reduces the current reliance on opioids and other analgesics.

I tried two rounds of stem cell infusions for gastroparesis, intestinal ischemia, heart valve dysfunction, cardiac ischemia, and temporomandibular joint disorder (TMJD).

The infusions reversed my gastrointestinal issues within 24 hours and my heart issues in 7 days, but it took longer for my TMJD to feel any relief. I did get some, just not as much as the other areas of my body. I also got improved function in my ovaries, with an increase in estrogen production I did not have before stem cell therapy.

The providers I worked with said it would take 6 to 8 rounds of stem cell infusions to help my nerve pain. I don’t have the money for that, so I stopped after two treatments.

Stem cell studies I have seen show great promise for multiple sclerosis patients, and I will be watching closely to see if it works for RSD and other neuro-autoimmune diseases. Stem cells could also be used as a tool to reverse opioid tolerance and opioid-induced hyperalgesia, two problematic side effects of opioid therapy.

Lidocaine

Although my providers told me that lidocaine infusions are practically pain free, I can tell you they are not. The lidocaine infusions I was given were in conjunction with my stem cell therapy. I felt everything and came away feeling that lidocaine was not a good option for me.

My step sister did have good results from her 7-day infusions of lidocaine, so it goes to show that you have to check to see what works best for you.

Lidocaine is an amide anesthetic and has a wide range of mechanisms of action. Research has shown that lidocaine, when given in a low dose intravenous infusion, has successfully provided pain relief for several chronic pain conditions that have failed other treatment modalities. A recent study in Pain Medicine found that lidocaine provided pain relief to 41 percent of patients, most of whom had neuropathic pain. 

According to providers at Stanford University, the success of lidocaine infusion is dependent on the specific cause of your pain. Some patients report immediate and long lasting pain relief, while others say relief came slowly and only lasted while the medication is being infused. Some patients also report unpleasant side effects.

The only adverse reaction I had – besides the fact it didn’t work for me – is that the infusion itself was extremely painful. Physicians have no way of knowing how you’ll react until you try it. By the time I was begging for help during the infusion, it was too late.

PNN columnist Crystal Lindell has been getting lidocaine infusions and they’ve helped Crystal reduce her use of painkillers. A recent study in Pain Medicine found that lidocaine provided long-lasting pain relief in 41 percent of patients, most of whom had neuropathic pain. 

I would be glad to share more of my experiences with infusions for anyone who has questions from the patient perspective. I would also love to hear your stories about infusions and whether they worked for you. 

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.

Opioid Limits: Means, Medians or Madness?

By Roger Chriss, Columnist

CVS recently announced it would impose a 7-day limit on opioid prescriptions for short-term acute pain for customers in its pharmacy benefit management program.  A pharmaceutical industry trade group also supports a 7-day limit and so does the U.S. Pain Foundation, a patient advocacy group.

Maine, New Jersey, Massachusetts and other states are also limiting prescriptions to a week or less, justifying the time frame by saying that’s what patients need on average.

But this represents a misunderstanding of how statistics work and ignores emerging research about opioid analgesia in the world of acute pain care.

In statistics, we have three values of fundamental importance: the mean, median, and variance.

The mean, also known as the “arithmetic mean,” is the sum of a collection of numbers divided by the number of numbers in the collection. The average height or weight of a group of people is the mean.

The median is the “middle value” of a data set that is ordered from lowest to highest. The mean is found in “median income” or “median price of a new home.” Importantly, the mean and median are not necessarily the same. In the set of numbers 2, 3, 3, 5, 7, 17 and 313, the median value is 5, but the mean value is 50.

The variance is the tendency of a set of numbers to cluster around the mean, or how spread out the numbers are. We know from experience that the height of adults is closely clustered around average height: Most people are over five feet tall and under seven feet tall. No one is 2 inches or 20 feet tall. But variance can also be significant, as is the case with annual income, home prices or family size.

The significance of these three values cannot be understated. In his essay “The Mean Isn’t the Message,” biologist Stephan J. Gould explains that a “median mortality of eight months” does not mean that a person will probably be dead in eight months. Some people, including Gould himself, live many times more than the median survival time for a disease. 

So when talking about opioid analgesia for acute pain, we cannot rely on just an “average” value. Physicians know this, but legislators, corporations and even some patient advocates do not seem to.

JAMA Surgery recently reported on the post-surgical acute pain needs of over 200,000 patients who had one of eight common surgical procedures. The results showed median values from 4 days for an appendectomy or gallbladder surgery to 7 days for a discectomy.  

The authors then used these values and the variance to calculate the range of time a patient would typically need opioids for acute pain after surgery:

• 4 to 9 days for general surgery procedures
• 4 to 13 days for women's health procedures
• 6 to 15 days for musculoskeletal procedures

In other words, there is substantial variance, with the optimal length extending to as much as two weeks. And there is no way to know ahead of time where in this range an individual will fall.

To address this uncertainty, the Opioid Prescribing Recommendations for Surgery were developed at the University of Michigan. They list the recommended numbers of tablets of hydrocodone, codeine, tramadol, or oxycodone for a range of common surgical procedures, including laparoscopic cholecystectomy, open colectomy, and several types of biopsy.

This resource gives amounts that “represent the actual maximum opioid use reported by three-quarters of actual surgery patients.” Those amounts range from 10 to 40 pills, depending on the procedure, noting that “prescribers are encouraged to use their best judgment.”

The Opioid Prescribing Recommendations for Surgery also advise recovering unused pills to reduce the risk of diversion, which is a much more sensible policy than forcing people recovering from trauma or surgery to seek refills if they happen not to fit a mandated average.

In sum, the medical profession is offering evidence-based recommendations for pain management that include not just a simplistic mean, but the real-world variance found in individuals. This approach is likely to provide better results than blanket policies geared toward a statistical mean that does not capture vital features of medical care.

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.

Why Human Suffering Should Bother You

By Margaret Aranda, MD, Columnist

Patients go to doctors when they have pain and doctors can give them opioid medication to relieve that pain. That should not bother you, because it is a decision made between the physician and the patient.

No doctor has the right to strip a patient of dignity by minimizing or downplaying their pain. We can't become indifferent to the denial of pain, because pain is real. Pain hurts.

A recent column in The Conversation by Dr. Andrew Kolodny bothers me because of two sentences:

"They (opioids) are also helpful when used for a couple of days after major surgery or a serious accident. Unfortunately, the bulk of the opioid prescriptions in the U.S. are for common conditions, like back pain," wrote Kolodny, who is a psychiatrist, not a pain management doctor.

Let’s look at the different ways that Dr. Kolodny is minimizing pain:

Postoperative Pain: A large study recently found that long-term opioid use after surgery is rare. Yet some patients are now being denied opioids after major surgery because of fears they might become addicted. Patients should ask questions about how their postop pain will be treated before surgery and get another surgeon if no opioids are to be offered. Patients do not have to allow a surgeon to minimize their pain.

Trauma:  Serious accidents cause severe trauma. Severe trauma can take months, years or decades to alleviate, leaving patients with chronic pain through no fault of their own. Many are burned, disfigured, scarred, disabled, have a pain syndrome, use a wheelchair, and go on disability or Medicare. 

We cannot allow ourselves to minimize any degree of pain that leads to suffering, less zest for living, and lower quality of life.

Back Pain: Millions of people have low back pain and the added mental health stress that often comes with it, which costs the U.S. economy $100-200 billion in lost workdays and productivity annually. Don't minimize their pain, either!

Treating Pain:  No doctor who witnesses a patient suffering in an emergency room, operating room or intensive care unit should minimize their pain. I've worked in all three as a board certified anesthesiologist and intensive care unit doctor, and am a witness to how an Ivy League university, private clinic, free clinic, county hospital, women's hospital, and Veterans Administration hospitals treat severe pain that may never, ever get better. I'm also a witness as a rebel patient who was offered acetaminophen and ibuprofen for my postop pain.

Physician judgment: Many patients with chronic pain are disabled and legally protected from discrimination. They have failed other therapies and deserve opioid medication for quality of life. They are not bad people, and they have not done anything wrong. Nevertheless, they are often treated like "today's lepers," as Dr. Thomas Kline says. So don't minimize their pain.

Patient Perspective: While on opioids, many chronic pain patients can get out of bed, work a job and keep their families together. They aren't addicts, do not sell their pills, steal money from others to get more, are not estranged from their families for a “drug problem,” and have never had naloxone used on them.

If they are lucky enough to still get an opioid prescription, many are being treated like criminals with rigors that do not stand on evidence-based medicine. They are forced to sign pain contracts, undergo drug tests, and then deal with pharmacy restrictions. Even with pills in hand, it is often not enough. There is an epidemic of undertreated chronic pain, so don't minimize the patient.

Patient Outcome: Unilateral withdrawal or sudden tapering of opioid therapy leads to patient suffering, sleep loss and decreased quality of life. A patient can become bedridden, depressed, and some have committed suicide! It all starts with non-validation of pain.

The Doctor's Oath

No doctor has a right to label, stigmatize, minimize or abandon a patient, much less a patient in pain. To stay clear of this, every medical student is taught to preserve patient dignity and autonomy. Nevertheless, patients are being withdrawn from opioid therapy all over America today, and it is being done by doctors who minimize pain, break the physician-patient bond, and dishonor the Hippocratic Oath.

We've known for over 150 years that doctors commit suicide twice as often as other professions. I think the current situation truly bothers most compassionate doctors, who will be struggling even more in the years to come with physician burnout syndrome. We could see even more suicides by medical students and physicians. 

Doctors are supposed to save lives, and it is just as important to save quality of life. Without quality of life, it is entirely human to have moments when death seems to be the only option out of a life of suffering. Doctors need to keep patients away from having suicidal thoughts, especially if their illness is something that modern medicine can take care of and is severely undertreated, like pain.

It is important to the public in general, and to patients who are disabled in particular, that everyone understands that there are doctors who work night and day for patients who are in pain. We are passionate about it because doctors are healers and no one is ever going to change the meaning of being a real doctor.

I was reminded of this recently when I saw the revised version of the Hippocratic Oath by the World Medical Association. Two important sentences depict how doctors should be responding to pain and their patients:

“I WILL RESPECT the autonomy and dignity of my patient."

"I WILL NOT USE my medical knowledge to violate human rights and civil liberties, even under threat."

When we minimize pain, we minimize the patient. When we minimize the patient, the patient dies.

So go ahead and let human suffering bother you. It proves that you still have empathy and compassion. 

Dr. Margaret Aranda is a Stanford and Keck USC alumni in anesthesiology and critical care. She has dysautonomia and postural orthostatic tachycardia syndrome (POTS) after a car accident left her with traumatic brain injuries that changed her path in life to patient advocacy.

Margaret is a board member of the Invisible Disabilities Association. She has authored six books, the most recent is The Rebel Patient: Fight for Your Diagnosis. You can follow Margaret’s expert social media advice on Twitter, Google +, Blogspot, Wordpress. and LinkedIn.

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.