Should Johns Hopkins be Policing the Nanny State?

By Terri Lewis, Guest Columnist

I was copied a response to the recently issued document, "The Prescription Opioid Epidemic: An Evidence-Based Approach" published by Johns Hopkins Bloomberg School of Public Health. 

The 46-page document is full of pronouncements about what the proper course of action should be to rein in the abuse of opioids by people who experience unrelenting chronic pain on a daily basis.  The document is replete with terms like addict, addiction, surveillance, monitoring,  intervention, adherence, and conformance distributed across seven topical areas, all claiming to address the current evidence for the need to ramp up the nanny state:

#1: Prescribing Guidelines
#2: Prescription Drug Monitoring Programs
#3: Pharmacy Benefit Managers and Pharmacies
#4: Engineering Strategies
#5: Overdose Education and Naloxone Distribution
#6: Addiction Treatment
#7: Community-Based Prevention

Nowhere, does this document even remotely address the fact that the onset of chronic pain is often an iatrogenic event that occurs as the result of medical harm or insufficiently delivered medical care. 

Nowhere, does this document address the financial and practical impact of these pronouncements on the ability of persons who have lost everything to illness to conform to protocols that turn healthcare delivery into a policing activity.

Everywhere, these protocols engender the further victimization, the institutionalization of marginalization, and stigmatization of the chronically ill as unworthy, incapable of protecting themselves, and potentially harmful to themselves and others because of the characteristics of their illness imposed disabilities. 

Every dollar that is proposed for expenditure in this document should be going to research designed to prevent and minimize the impact of chronic pain -- not punish it.  But this document, from a major public health training institution, completely fails to address the prevention and reduction of chronic pain as a public health issue of significant importance, and is focused instead on counting adherence, conformance and compliance activities that will (a) not lead to improved personal outcomes for consumers who live with chronic pain and (b) rob consumers of precious resources with which to live. 

These pronouncements reflect an ignorance of astounding proportion in understanding who persons with chronic pain actually are and the conditions under which they are forced to live.  Who does this document serve?  Who are we trying to protect?  

I am outraged.

And then this.  Into my email came a response to this smug, sanctimonious document from a woman in California who suffers from interstitial cystitis -- acquired through medications she received after treatment for shoulder and spinal injuries at the hands of her medical provider.  It's too good not to share:

To the misguided folk at Johns Hopkins Bloomberg School of Public Health:

This is my contribution to your little Town Hall hand-wringing session.

So, I guess you are jumping on the anti-opiate frenzy bandwagon.  Just another organization that feels compelled to point at anyone who takes opiates, and call us all "addicts" and not even considering those of us who suffer from severe CHRONIC PAIN (the kind That Never Ends) due to circumstances totally beyond our control.  My pain is not caused by any flaw in my character.  People like myself who see our doctors religiously and always take our medication responsibly.  What, are you being financially rewarded by punishing us?  What did we ever do to you?  Or are you just trying to Thin the Herd?  I guess Chronic Pain Patients' Lives DON'T Matter.

I'm talking to you.  I'm one of those people, who suffer from illnesses and or injuries that have already stolen our quality of life away from us, and pain that causes as much, and sometimes more, pain than cancer.  People who suffer from pain that only opiate prescription medication can dull.  And people like you, whom I will never meet, want to take that away from me.  A patient who has NEVER EVER ABUSED HER MEDICATION.  Not ONCE.  I am a 60 year old lady who worked her entire adult life and never once did anything to invite nor cause the condition that causes me terrible TERRIBLE pain.

My pain saga started with chronic tears to both my rotator cuffs, and a herniated cervical spine.  All from a desk job involving typing and mousing and staring at a computer monitor for years and years and years.  This activity has destroyed the tendons in both my shoulders and neck and herniated my spine.  And while that pain was bad enough, I figured it would eventually end.  I never envisioned that the pain would remain after my shoulders were carved up and stitched back together.  It was during my recovery from this surgery, that I began to experience the horrors of an incurable illness known as Interstitial Cystitis.

On bad days it feels like someone is taking a blowtorch to my genitalia.   In fact, Interstitial Cystitis is considered the Third Worst Pain in all of medicine.  Imagine, if you will, the sensation of hot lava being blasted through your bladder, vagina, colon and pelvic parts.  All the time.  Having the urge to urinate every 15 minutes -- or more often than that -- on bad days.  I am basically chained to a toilet.  And because the pain is ALWAYS much worse at night, I suffer from severe insomnia.  It is impossible to fall asleep or stay asleep with pain this bad.  My urologist opined that I would be better off if I suffered from Bladder Cancer, because there is at least a chance of recovery from that illness.

The only FDA authorized treatment for this condition is Elmiron, and it doesn't work on every patient.  In fact, it only works on maybe 25% of patients who suffer from this horrible condition.  It did nothing to help me with any of my symptoms but cause my hair to fall out and raise my liver enzymes to a dangerous level.  That's all our modern medical machine could do for me medically.  They sure as hell cannot cure this illness yet.  The only thing that medicine CAN offer is pain relief.  The only chance in hell I have of ever having a life without this horrible, searing, burning, aching, stabbing pain is if The Good Lord decides to send me into remission.  All a doctor can really do for me to help me is provide me with pain relief.

The only medication I take that takes the edge off of this pain is Norco.  I tried the Fentanyl patch, but it caused me to develop an intestinal blockage.  For obvious reasons, I had to discontinue that medication.  And while I intensely dislike taking ANY medication, I dislike the awful pain worse.  I have NEVER abused my medication.  I never take more than I am prescribed.  I do everything and anything that is asked of me, whether it involves blood tests and/or pissing into a cup.

So why am I going to be punished?  Answer me that question.  I just found out that my pain medication is going to be cut drastically OR terminated at my next visit to my pain doctor, which is this Friday.  It is not being taken away because I have ever abused my medication, or lied, or deceived, or stolen, or sold it.  I can only assume that my pain doctor is just too afraid of the DEA and the paperwork headache.  It will be easier for him to just dump me as a patient, and limit his practice to injections which make him more money anyway.  Well, guess what?  Injections have never done a thing to help my pain, and I have had quite a few.  I have had TENS units, Physical Therapy, Massage and Ultrasound.  I have tried just about everything that exists to reduce the horrendous pain I experience 24/7.  The only medicine with the fewest side effects that helps reduce pain is Norco.

We are a vulnerable part of the population who are being deprived of compassionate and adequate care to help us live our lives with a semblance of normalcy.  We are being punished for the irresponsible actions of people who would be addicted whether or not it was via opioids or anything else.  All of this noise is just that:  NOISE.  Mark my words:  all this brouhaha will not make one iota of difference in the epidemic you speak of.  People who are addicts will always find a way to get high.  That is what addicts do.  However, what your actions WILL do is cause an increase in suicides of people suffering from terrible TERRIBLE pain, who can no longer get medication that enables them to have something resembling a quality of life, and be semi-productive citizens. 

Yes.  The pain of illnesses like mine can and does drive good people to commit suicide if they can't get pain relief.  Or maybe these same people turn to other drugs they would never EVER consider if they received the compassionate care we are all entitled to.  That is what you will see start to happen.  I am sure that some of this surge in heroin use is by people who are in such terrible pain that they are desperate, and their doctors will not help them because of fear of the DEA and organizations like yours.  And then what will happen?  More "meetings" and "studies" and "head-scratching" about the spike in suicides?  How can you be so obtuse?

No one is speaking up about us. No one is helping us.  Chronic pain patients are being marginalized and treated like addicts, when we are not.  We can barely function because pain robs us of the ability to function, and we are already exhausted from this daily fight.  I guess we are easy targets.  Few of us possess the strength to march on numbers in Washington or anywhere else.  I know I couldn't.  I am so ill that I can barely leave my house.

I know what happens to me when I don't take my pain medication:  I experience much more severe pain.  I don't drool, or hallucinate, or stumble, or vomit, or shiver, or do anything but just cry buckets and buckets of tears, and huddle in a corner of my bed in the fetal position with bags of ice stuffed into my underwear to try and numb the horrible, searing pain of this illness.  And I guarantee that if any of you people making these horribly unjust decisions suffered from the condition I suffer from, that you would be begging for drugs to take the pain away.  I'm willing to stake what few dollars I still possess on that fact, because guess what?  This illness has also rendered me destitute and incapable of working at my job.  I can't even sit in a chair very long because of the pain.

So, in summary, what you are doing is KILLING US.  You, and 60 Minutes, and the CDC and the DEA and every other soulless agency that is carping about this.  If I weren't so sick from this horrible illness, and what it has done to my life, I would be laughing because of the incredible stupidity being displayed by a bunch of suits I will never meet.  Dumping every single person who takes opiates into a category you call "addiction" and shoving us off in the same leaky boat.  Yes.  You are killing us.

Name withheld to protect her privacy

For the record, this person also found out last week that her beloved husband of 20 years is in the throes of stage 4 kidney failure as a result of 5 years of treatment from a physician for arthritis -- resulting in an unidentified drug-drug interaction that has, unbeknownst to the physician, destroyed his patient's kidneys because he failed to monitor his patient or pay attention to known drug-drug interactions.

So who needs to be monitoring and surveilling here?  Who?  Does the public really need protection from persons with chronic pain who can barely leave their homes?  Or do persons in pain need protection from the public purveyors of unsound, impractical, and misguided policies? 

God spare us from the nanny state.

Terri Lewis, PhD, is a specialist in Rehabilitation practice and teaches in the field of Allied Health.  She is the daughter and mother of persons who have lived with chronic pain.

This column was reprinted with permission from the author.

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.

CDC Accused of ‘Blatant Violations’ of Federal Law

By Pat Anson, Editor

A pro-business legal foundation with a history of taking government agencies to court is asking the Centers for Disease Control and Prevention (CDC) to withdraw plans to release new guidelines for the prescribing of opioid pain medications.

In a letter to CDC Director Tom Frieden, the Washington Legal Foundation accused the agency of “blatant violations” of the Federal Advisory Committee Act (FACA), which requires federal agencies to identify members of advisory committees and hold committee meetings in public. As Pain News Network has reported, the CDC has refused to publicly disclose the identities of the “Core Expert Group” that initially drafted the guidelines.

“The overly secretive manner in which CDC has been developing the Guideline serves the interests of neither the healthcare community nor consumers,” wrote Washington Legal Foundation (WLF) chief counsel Richard Samp in his letter to Frieden.

“More importantly, CDC’s repeated violations of the Federal Advisory Committee Act call into question the viability of the entire enterprise and dictate that any guidelines adopted as a result of the current administration process could not withstand judicial scrutiny. We call on CDC to withdraw the Draft Guideline and to generate reliable data on ways to ensure adequate treatment of patients while preventing opioid abuse before renewing efforts to write a guideline.”

The CDC’s draft guidelines for primary care physicians recommend “non-pharmacological therapy” as the preferred treatment for chronic non-cancer pain. Smaller doses and quantities of opioids are recommended when the drugs are prescribed for acute or chronic pain. Many pain sufferers fear they will lose access to opioids when the CDC plans to adopt the guidelines in January 2016. A complete list of the guidelines can be found here.

The identities of the CDC’s Core Expert Group (CEG) were leaked soon after the draft guidelines were released in September.  The group includes Jane Ballantyne, MD, President of Physicians for Responsible Opioid Prescribing (PROP), an advocacy group that seeks to end the overprescribing of opioids. PROP Vice President Gary Franklin, MD, is also part of CEG. Critics say Ballantyne, Franklin and several others who advised the CDC have a conflict of interest and never should have served as consultants on the guidelines.

The CDC says it withheld the identities of the Core Expert Group so its members could “provide honest and independent comment and feedback.” The agency also maintains that CEG does not qualify as a FACA advisory committee.

“CDC’s secrecy, and its apparent indifference to conflicts of interest by those likely to support news restrictions on opioids, have led many to conclude that CDC is uninterested in conducting administrative proceedings that give all interested stakeholders an equal opportunity to attempt to influence the agency’s decision making. If CDC is to overcome its tarnished image, it must immediately eliminate its culture of secrecy and apply its conflict-of-interest rules in an even handed manner,” Ramp wrote in his letter to Frieden and Debra Houry, director of the CDC’s National Center for Injury Prevention and Control, which oversaw development of the guidelines.

A spokesman for the Washington Legal Foundation told Pain News Network the CDC had not yet responded to the group’s complaint. He also declined to say how the foundation would respond if the guidelines were not withdrawn.

WLF describes itself as a public interest law firm “that regularly litigates to ensure that federal administrative agencies comply with statutes designed to ensure procedural fairness.”  The non-profit foundation generally supports business groups and companies in litigation against  government agencies, and has represented or acted in behalf of pharmaceutical companies such as Johnson & Johnson and Purdue Pharma, the maker of OxyContin. 

"We’re long-standing supporters of WLF, in addition to several other business and legal organizations. We’ve provided them with unrestricted grants," a spokesman for Purdue Pharma told Pain News Network.

WLF does not disclose the names of its donors. According to Greenpeace, WLF has accepted over $1 million in donations from foundations representing Charles and David Koch, two billionaire brothers who actively support conservative causes.

Senators Support CDC

With the CDC under fire from pain patients and advocacy groups, eight U.S. Senators have written a letter to Frieden expressing their support for the CDC’s guidelines.

“We are committed to doing everything in our power to bring this (opioid) epidemic under control because our communities are hurting. The problem will only grow worse if we fail to act,” the letter says. “We applaud the CDC for developing prescribing guidelines and for your efforts in the fight to end prescription drug abuse. We strongly urge you to maintain this commonsense approach when you release the final guidelines early next year.”

The letter is signed by Sens. Joe Manchin (WVa), Ed Markey (Mass), Tammy Baldwin (Wisc), Dianne Feinstein (Calif),  Jeanne Shaheen (NH), Bill Nelson (Fla), Richard Blumenthal (Conn) and Angus King (Maine).

Study Calls for End to ‘Permissive’ Opioid Prescribing

By Pat Anson, Editor

A major study released by the Johns Hopkins Bloomberg School of Public Health is calling for new guidelines in the prescribing of opioid pain medication, including the repeal of “permissive and lax prescription laws and rules.”

The report also calls for sweeping changes in the way opioid prescriptions are dispensed and monitored, and would encourage insurance companies to provide information to federal regulators about “suspicious” pharmacies, prescribers and patients.

The Johns Hopkins report (which can be seen here) grew out of discussions that began last year at a town hall meeting on prescription opioid abuse hosted by the Bloomberg School and the Clinton Foundation. It was prepared primarily by a group of public health researchers, physicians, law enforcement officials and addiction treatment specialists.  

“A public health response to this crisis must focus on preventing new cases of opioid addiction, early identification of opioid-addicted individuals, and ensuring access to effective opioid addiction treatment, while at the same time continuing to safely meet the needs of patients experiencing pain,” wrote G. Caleb Alexander, MD, co-director of the Johns Hopkins Center for Drug Safety and Effectiveness at the Bloomberg School.

“It is widely recognized that a multi-pronged approach is needed to address the prescription opioid epidemic. A successful response to this problem will target the points along the spectrum of prescription drug production, distribution, prescribing, dispensing, use and treatment that can contribute to abuse; and offer opportunities to intervene for the purpose of preventing and treating misuse, abuse and overdose.”

The report calls on federal and state agencies, state medical boards and medical societies to require "mandatory tracking of pain, mood and function" at every patient visit, as well as patient contracts and urine drug tests.  Patients prescribed high doses of opioids would be required to consult with a pain management specialist.

“It sounds like an aggressive government intrusion into the practice of medicine and is punitive towards providers willing to help people in pain. It certainly is a threat.  Every physician in America should be concerned if these recommendations are adopted,” said Lynn Webster, MD, past President of the American Academy of Pain Medicine.

“I am amazed that one of our finest educational institutions in America failed to address the source of the prescription drug abuse problem in their report.  Not once did the report discuss the lack of safe effective treatments for pain.  They almost totally ignored the needs of people in pain.  Yet it is number one public health problem in America. Their focus was myopic and represents a narrow and prejudicial view of people in pain.”

One of the more controversial recommendations in the report would expand access to prescription drug monitoring programs (PDMPs) to private insurance companies and pharmacy benefit managers (PBMs). Access to those databases, which track prescriptions for opioids and other controlled substances, are currently restricted to regulators, law enforcement and physicians.

"It is a very bad idea to allow law enforcement or even payers to have access to PDMPs without a cause approved by a judge.  This is personal medical information that should be protected," said Webster in an email to Pain News Network.  

Under the Johns Hopkins plan, insurers would be encouraged to report suspicious prescribing activity to federal regulators and the Center for Medicare and Medicaid Services (CMS).

“Allowing managed care plans and PBMs access to PDMP data will improve upon their current controlled substances interventions that have been shown to positively influence controlled substances utilization,” the report states. “All PBMs should provide a list of suspicious pharmacies, prescribers and beneficiaries to the National Benefit Integrity Medicare Drug Integrity Contractor (MEDICs). Using the actionable PBM data they are receiving, MEDICs should be reporting potential providers for removal to the CMS.” 

The report also calls for mandatory use of PDMPs by prescribers and pharmacies, more training for medical students in pain management, expanded federal funding of addiction treatment, and greater access to naloxone, a drug that can reverse the effect of an opioid overdose.

“What’s important about these recommendations is that they cover the entire supply chain, from training doctors to working with pharmacies and the pharmaceuticals themselves, as well as reducing demand by mobilizing communities and treating people addicted to opioids,” said Andrea Gielen, director of the Johns Hopkins Center for Injury Research and Policy at the Bloomberg School and one of the report’s signatories.

“Not only are the recommendations comprehensive, they were developed with input from a wide range of stakeholders, and wherever possible draw from evidence-based research.”

One of the ”stakeholders” and a signatory of the Johns Hopkins report is Andrew Kolodny, MD, founder of Physicians for Responsible Opioid Prescribing (PROP), an advocacy group that seeks to end the overprescribing of opioids. Kolodny, who has collaborated with Dr. Alexander on other prescribing studies, is chief medical officer of Phoenix House, a non-profit that operates a chain of addiction treatment centers. According to a note on PROP's website, "PROP is a program of Phoenix House Foundation."

Kolodny has referred to opioid pain medication as “heroin pills” and has called for expanded access to buprenorphine, a weaker opioid widely used to treat both addiction and pain.

The Johns Hopkins report would greatly expand the use of buprenorphine by ending the 100 patient limit on the number of people that DEA licensed physicians can treat with buprenorphine at any one time. It would also require federally funded addiction treatment programs, such as those offered by Phoenix House, to allow patients access to buprenorphine.

Although praised by Kolodny and many addiction treatment specialists as a tool to wean addicts off opioids, some are fearful buprenorphine is already overprescribed and misused. Addicts have learned they can use buprenorphine to ease their withdrawal symptoms and some consider it more valuable than heroin as a street drug.

"The 100 patient limit is going to be lifted. It is going to create buprenorphine pill mills and increase the abuse of heroin. You will have more doctors getting the DEA exemption as they would not be subject to visit by DEA inspectors checking on the patient limit," said Percy Menzes, president of Assisted Recovery Centers of America, which operates four addiction treatment clinics in the St. Louis, Missouri area.

Over three million Americans with opioid addiction have been treated with buprenorphine. According to one estimate, about half of the buprenorphine obtained through legitimate prescriptions is either being diverted or used illicitly.

Hospitals Accountable for Joint Replacement Surgeries

By Pat Anson, Editor

Hospitals will be held accountable for the cost and quality of care given to Medicare patients who undergo hip and knee replacement surgery under a pilot program by the Center for Medicare and Medicaid Services (CMS).

Hip and knee replacements are the most common inpatient surgery for Medicare beneficiaries. In 2014, there were more than 400,000 such procedures, costing Medicare more than $7 billion for hospitalizations alone. Post-surgery complications such as pain and infection often lead to hospital readmissions and extended recovery periods.

Under the Comprehensive Care for Joint Replacement (CJR) model, the hospital where the surgery takes place will be accountable for all services from the time of the surgery through 90 days after hospital discharge. This “bundling” of payments for hospitals, physicians, physical therapists and other health providers is meant to encourage them to work together to deliver more effective and efficient care.

Depending on the hospital’s quality and cost performance, the hospital will either earn a financial reward or be required to refund Medicare for a portion of the cost.

The quality and cost of care for hip and knee replacement surgeries can vary greatly. Currently the average Medicare expenditure for surgery, hospitalization, and recovery ranges from $16,500 to $33,000 across geographic areas. The rate of complications from infections or implant failures can be more than three times higher at some facilities than others.

“Incentives to coordinate the whole episode of care – from surgery to recovery – are not strong enough, and a patient’s health may suffer as a result,” CMS said in a statement. “When approaching care without seeing the big picture, there is a risk of missing crucial information or not coordinating across different care settings. This approach leads to more complications after surgery, higher readmission rates, protracted rehabilitative care, and variable costs. These are not the health outcomes patients want.”

The CJR model is being tested in 67 metropolitan areas throughout the country, and nearly all hospitals in those areas are required to participate. Patients will still be able to choose their doctor, hospital, nursing facility, home health service, and other providers. A list of all 67 areas can be found here.

The aging of the U.S. population is causing a surge in hip and knee replacement surgeries. Over a million joint replacement surgeries are currently performed annually – a number expected to surpass four million by 2030. 

Joint replacement surgery is generally conducted on the elderly to relieve pain from osteoarthritis, a painful and disabling condition caused by a loss of cartilage and the degradation of joints. Twenty-seven million Americans suffer from osteoarthritis.

Recent studies have questioned whether many of the surgeries are appropriate. A five year study of 175 knee replacement patients by the National Institutes of Health found that over a third of the surgeries were inappropriate, according to researchers who found that many patients had pain and other symptoms that were too mild to justify having their knees replaced.  Less than half (44%) of the knee replacement surgeries were classified as appropriate, with 22% rated inconclusive and 34% deemed inappropriate.

Opioids Saved My Life

By Rebecca “Becky” McCandless, Guest Columnist

My new life of chronic pain started in May of 2005. After being diagnosed with degenerative disc disease, I was given a series of 3 epidural steroid injections with a corticosteroid made by Pfizer called Depo-Medrol.

I had no relief from the first two injections, but my doctor insisted that I try a third one. He struggled to get the needle into the epidural space, probably because of scar tissue in my back caused by a prior back surgery, a laminectomy.

After the 3rd steroid injection, I had a severe, instant headache, which was relieved somewhat when I laid down. The doctor had punctured my dura, the outer lining of the spinal cord, which caused a spinal leak.

He was defensive when I told him about my headache pain, saying, “No way, there was no fluid in my syringe.”

After an unsuccessful blood patch, I ended up in the ER a week later with the worst, throbbing headache I ever suffered. Every time I lifted my head I vomited violently.

The doctor ordered numerous tests and he finally diagnosed me with too much STRESS! I knew something had gone wrong during the epidural steroid injection, yet my doctor blamed me for the harm he did to my spine. My pain worsened over time and it became so intense that I thought about suicide.

Luckily, I found a doctor who prescribed opioids for my intractable pain or I would not be here. Opioids saved my life.

rebecca roberts

I tried many other drugs, including Lyrica, which is much more expensive, made me tired and affected my thinking abilities.  Opioids allow me to do my grocery shopping and care for myself.  If I don't have access to my pain meds, I have no quality of life. Opioids keep my pain at tolerable levels. It does not get rid of my pain totally, nothing ever will.

Opioids are often blamed for accidental overdoses, but I know better as I have arachnoiditis friends who committed suicide because their pain was so bad.  Some families deny it was suicide because insurance companies will not pay if a family member commits suicide.

Eventually I found a doctor who diagnosed me with arachnoiditis. There is no cure for this pain condition. It is mainly iatrogenic, which means it is caused by a medical procedure.

I also found out arachnoiditis is caused by Depo-Medrol. Pfizer warns against the use of this drug in epidurals in Australia and New Zealand. The New Zealand datasheet states that Depo-Medrol must not be used in epidurals and on page 18 it says it can cause arachnoiditis.  Patients need to read the datasheet for themselves before they agree to allow a doctor to do an injection near their spinal cord.

Three months after my epidurals, I could no longer work and had to leave my quality control job at a manufacturing plant, making transmission parts for Honda, which I had done successfully for four years. I loved my job and worked 60 to 70 hours per week.  Now I rely on Social Security disability. 

Luckily, my disability was quickly approved. Many of my arachnoiditis friends struggled for years to get their diagnosis.  Some never do.  According to one estimate, there are 11,000 new cases of arachnoiditis each year, but I think it is much more than that because doctors will not admit to harm.

My medical injury was 10 years ago.  I have been on a high stable dose of opioids with no increases. Now there is so much talk with the Centers for Disease Control Prevention creating guidelines to control opioid prescribing.

The CDC is clueless because they are recommending a cap on the daily dosages. How can they estimate a person’s pain levels? Everyone is different, and there are genetic differences and high metabolizers who need higher doses to control their pain. If that happens, my pain will be uncontrolled again, and I worry about my future. 

Is this fair to the thousands or even millions of pain patients who may suffer from arachnoiditis, who have been harmed by the medical community and incompetence of the Food and Drug Administration? Even though the FDA issued a warning on steroids used for back pain, doctors are ignoring it and not telling their patients. We were harmed and now we suffer because doctors are turning us away.

Thank you to producer Gerri Constant and KCBS-TV in Los Angeles for reporting on the dangers of epidural injections.  We agree with Dr. Forest Tennant that this pain condition is no longer rare.

Rebecca Roberts lives in Indiana. She is a member and supporter of the Arachnoiditis Society for Awareness and Prevention (ASAP)  and the Facebook group Arachnoiditis Together We Fight.

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 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: We Are Survivors

By Carol Levy, Columnist

So many shows on TV celebrate "survivors" -- survivors of cancer and abuse are the most recent examples I have seen.

But those of us with chronic pain are never celebrated. Instead we are ignored, or worse, excoriated as being the cause of the "painkiller epidemic.”

60 Minutes recently did a story entitled "Heroin in the Heartland." In it, those who are prescribed opioid pain medications and their doctors are portrayed as pied pipers to the world of heroin.

The story was not about those who legitimately need, are prescribed, and sensibly use narcotic medications to tame their pain. Even a cursory sentence to negate the stereotype would have been gladly received.

We who live in chronic pain most often seem to be the “fall guy” for the ills of the world, at least when it comes to the use of opiates, both legal and illegal. To the media and maybe the world, we are not survivors, not under their definition: someone who overcomes a serious illness or situation.

After all, we have not “overcome.” We can't overcome, because our struggle is ongoing, every day, for some of us, every minute, every hour; fighting pain and often disability. Even on a good day, for many of us the fight is ever present; the fear of when it will return being in the forefront of all we do and think.

This is how the Merriam-Webster dictionary defines survivor:

1:  to remain alive after the death of : <he is survived by his wife>

2:  to continue to exist or live after : <survived the earthquake>

3:  to continue to function or prosper despite :  <they survived many hardships>

How does that not define us?

We continue every single day, doggedly putting one foot in front of the other. The more able among us continue to work, raise a family, and be an integral part of the community, despite being in severe pain. The amount of stamina, perseverance and strength that takes would take many an ordinary person down and out.

Others of us have pain so severe, so debilitating, that merely being able to go outside, to get to the store, for some even being able to get out of bed, is a Herculean task. And yet, we do it.

It can be hard for us to see and acknowledge this monumental task we succeed at each and every day, merely by getting through each day. We work so hard at the struggle and it becomes so second nature, that it is often invisible to us, just as our pain is invisible to the world. After all, if no one sees the pain, how can they see or understand the struggle?

So how do you define a survivor?

It is easy. Just look in the mirror.

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.

Meditation Changes Brain Activity to Reduce Pain

By Pat Anson, Editor

Mindfulness meditation significantly reduces both physical and emotional pain, according to a new placebo controlled study that used MRI imaging to document changes in the brain that occur during meditation.

"We were completely surprised by the findings. While we thought that there would be some overlap in brain regions between meditation and placebo, the findings from this study provide novel and objective evidence that mindfulness meditation reduces pain in a unique fashion," said Fadel Zeidan, PhD, assistant professor of neurobiology and anatomy at Wake Forest Baptist Medical Center in Winston-Salem, NC.

Zeidan and his colleagues enrolled 75 healthy volunteers in the study and used a thermal heat probe on their skin to test their reaction to pain. The probe was heated to 120 degrees Fahrenheit (49 degrees Centigrade) – a level most people find painful. Participants were then asked to rate the pain intensity (physical sensation) and pain unpleasantness (emotional response).

Those who had undergone mindfulness meditation reported their physical pain was reduced by 27 percent and the unpleasantness by 44 percent.

In contrast, volunteers who had used a placebo analgesic cream before the heat probe test said their physical pain was reduced by 11 percent and their emotional pain by 13 percent.

The participants' brains were also scanned with magnetic resonance imaging (MRI) before and after the heat probe experiment.  

"The MRI scans showed for the first time that mindfulness meditation produced patterns of brain activity that are different than those produced by the placebo cream," said Zeidan.

Mindfulness meditation activated brain regions (orbitofrontal and anterior cingulate cortex) associated with the self-control of pain; while the placebo cream lowered pain levels by reducing brain activity in pain-processing areas (secondary somatosensory cortex).

Another brain region, the thalamus, was deactivated during mindfulness meditation. The thalamus serves as a gateway that determines if sensory information is allowed to reach other parts of the brain. By deactivating this area, researchers say, mindfulness meditation may cause signals about pain to simply fade away.

Mindfulness meditation also was significantly better at reducing pain intensity and pain unpleasantness than a placebo sham meditation. The placebo-meditation group had relatively small decreases in pain intensity (9%) and pain unpleasantness (24%).

"This study is the first to show that mindfulness meditation is mechanistically distinct and produces pain relief above and beyond the analgesic effects seen with either placebo cream or sham meditation," Zeidan said. "Based on our findings, we believe that as little as four 20-minute daily sessions of mindfulness meditation could enhance pain treatment in a clinical setting. However, given that the present study examined healthy, pain-free volunteers, we cannot generalize our findings to chronic pain patients at this time."

The Wake Forest study is published in the Journal of Neuroscience,

In addition to relieving pain, there is increasing evidence that meditation and mindfulness cognitive therapy are effective in treating a broad range of mental health issues, including anxiety, depression and stress.

One study, published in the British Medical Journal, found that online mindfulness courses were often just as effective as face-to-face meetings with a therapist.

You can sample a relaxing online pain management meditation at Meditainment.com (click here to see it). The initial course is free.

Surviving the Hurricane of Chronic Pain

By Crystal Lindell, Columnist

I have recently started feeling better these last few months — a string of good days, I like to say — and it’s given me a chance to catch my breath and reflect on some of the crap I’ve endured over the last couple years.

For me, waking up one day with stabbing rib pain was like swimming along the river of life, only to be picked up by a hurricane, hurled back about 100 miles, and left to fight the raging current in water that was barely above freezing.

And yeah, it made about as much as sense as a hurricane in a river.

It was like everything I had accomplished had been taken from me, and instead of swimming forward, or swimming at all, I was literally gasping for air, about to drown every single day.

And people would come along and say, “Oh, I’ll pray for you!” And I’d be like, “Umm, I’m literally drowning! And there’s a hurricane! In a river! HELP ME!”

And they would say, “Well, if you really want to survive, you’ll give up gluten.” And I’d be like, “Umm, I just need a life raft! Giving up gluten isn’t going to help me!”

And they would say, “Well, if you were a horse, we would have let you drown by now.” And then they would laugh. And I’d be in the river, trying to survive the winds and waves and the rain.

And then someone with the best of intentions would come up to me and say, “Well, everything happens for a reason. I’m sure there’s some larger reason why you’re drowning.” And then they would walk away. On the land.

I spent almost six months on the verge of drowning. And eventually I just got so tired that I wanted nothing more than to close my eyes, fall back into the water, and let it all go. Let the pain go. Let the depression go. Let the daily battle to stay above water, go.

I spent every day wanting to let go. Planning ways to let go. Convincing myself that if my family really loved me, they would just let me go.

I also started stripping away everything I could so that I could stay above water. I got rid of my part-time job as a church youth leader. I threw my independence over board and moved in with my mom. And eventually, heartbreakingly, I even let go of my boyfriend’s hand. I let it all slip away so I could focus all of my energy, every day, on breathing in air instead of filling my lungs with water.

And I tried to see every doctor I could find, looking for a lifeguard. But they would say things like, “Well, you don’t look like you’re drowning.” Or, “Well, I mean, you’re drowning. But we can’t see the hurricane, so there’s not really anything we can do about it.”

And then, finally, a rescuer came along. We will call him, Dr. M, for Miracle. I literally tear up when I think about meeting Dr. M. 

He couldn’t see the hurricane either, but he believed me when I said there was one. And he understood the one thing I needed more than anything was a life raft. So he threw me one. Dr. M put me on a large dose of opioids, and it was the best thing that could have ever happened to me. It was like someone calmed the winds and the storm started dying down. The water finally got still for the first time in a long time.

He was the first doctor to actually take my pain seriously. I imagine that he’s either had chronic pain himself, or loves someone who had it because that’s the only way I can explain how compassionate he was — how amazing he was about believing that I was truly drowning.

It’s true that the best thing you can say to someone who is sick is, “I believe you.”

It was because of Dr. M that I finally got on a drug regimen that allowed me to float in the water every once in a while and rest my arms. To let the life raft do some of the work. And when I told him that the medication wasn’t lasting me all month — that, near the end of the 30 days, I was starting to drown again — he believed me, and gave me enough to get through all four weeks.

But even with the drugs, the only thing I could really do was float. I couldn’t swim forward or even get to shore. I just stayed still, trying to survive all the times the winds picked up, or the water got below freezing, or the waves got too big. I did my best to endure the side effects from the medication, the pain flares, and the ER visits.

There’s a saying, “You’ve got what it takes, but it will take everything you’ve got.” And surviving this has taken everything I ever had in my soul.

For the last two years though, I’ve just been happy to still be alive. Happy that I had a life raft and some calmer waters. I started planning how to live my life where I was. It was 100 miles behind where I’d been, but I started to realize that the trees in that area were actually kind of pretty. And that there were some other people floating around that I would have never met if there had never been a hurricane. I started to think that perhaps I could set up a life there.

But then, something happened. Something I never thought would ever happen, actually happened. I started swimming forward again.

I had tried every day that I could to swim forward, only to be pushed back. I would wake up and try to shower, go for a walk, drive, or do anything that would help me go forward again. But every time, I ended being tossed right back to where I was — sometimes even further back.

One day though, I swam forward and I stayed there. And then the next day, I swam forward a little more, and I stayed there too. And then again, again and again.

I had started taking vitamin D, after realizing that I was tragically deficient in what should more accurately be referred to as hormone D. When I started getting my levels back up it was like I suddenly had the strength to move forward again. My whole body could swim again.

And for the first time in a long time, I experienced things I had almost forgotten existed. The perfect pleasure of going for a long walk on a crisp fall day. The heart-stopping independence of being able to get in car, drive myself to the mall, and do the one thing I used to love most of all — shop. The joy of being able to take a shower and immediately blow dry my hair without needing an hour-long break in between the two.

There were so many things that I couldn’t do because I couldn’t swim forward for so long. So many things I had to give up. Like folding my own towels in my own special way. And waking up to the sunrise and being happy to see the morning light without having to worry about the pull of fatigue from my medications.

And even, especially, turning over and laying on my right side. I had not laid on my right side in over two years.

So now, here I am, finally swimming forward again for the first time in a long time. For now, it feels like maybe the hurricane has finally passed. But I still wake up every day worried that there will be another storm. I worry that the winds will pick up and I’ll be hurled backward, and I won’t have a life raft and I’ll start to drown again.

But now, at least, I know that if that does happen, I have it in me to survive.

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.

Marijuana No ‘Magic Bullet’ for Pain in Minnesota

By Pat Anson, Editor

Minnesota may be one of 23 U.S. states where medical marijuana is legal, but getting a prescription for cannabis there is difficult – especially for chronic pain patients.

Since Minnesota enacted one of the nation’s strictest medical marijuana laws last year, less than 700 people have enrolled in the state’s cannabis registry. Only nine health conditions qualify for a marijuana prescription in Minnesota – and chronic pain isn’t one of them – a status that appears unlikely to change after an advisory panel voted 5-3 not to allow pain patients into the cannabis registry.

The reason? Medical marijuana is “not a magic bullet” and there’s not enough evidence that it can treat pain.

“Panel members expressed concern that patients eligible to use medical cannabis for pain have expectations that it would provide total relief and that such a perception may leave patients to abandon other proven pain-management methods, such as physical therapy,” the recommendation said.

“Panel members cited the recent opioid crisis, where good medications were demonized because prescribers used it to treat pain without knowing its proper uses. Even after studying the information available on medical cannabis, panel members said providers do not feel prepared to certify patients for its use.”

The panel recommended that marijuana not be prescribed to anyone with a history of substance abuse or patients with mental health problems. If marijuana is allowed for intractable chronic pain, the panel suggested that patients should be disqualified if they are under 21, have a history of psychosis, are pregnant or breast feeding.

The final decision is in the hands of Minnesota’s Health Commissioner, who has until the end of the year to decide if medical marijuana should be allowed for intractable pain.

The nine conditions that qualify for medical marijuana in Minnesota are cancer, glaucoma, HIV/AIDS, Tourette Syndrome, Amyotrophic Lateral Sclerosis (ALS), seizures, severe muscle spasms, Crohn’s Disease and terminal illness.

Terminally ill cancer patients – many of whom are in pain – are allowed to use medical marijuana. And many say they’ve been able to reduce their use of opioids since they started taking marijuana, according to the Minneapolis StarTribune.

“What are we going to do about patients? What do we tell patients who we know we can help, but we currently can’t help them? That’s the remarkably frustrating thing about this process that gets to me,” said Manny Munson-Regala, CEO of LeafLine Labs, one of the state’s two medical marijuana producers.

In addition to limits on the conditions it can be prescribed for, medical marijuana is not available in leaf form and cannot legally be smoked in Minnesota.  It is only legal in a pill, vapor or liquid form.

Miss Understood: Vibrant Trial

(Editor’s note:  Several weeks ago we were contacted by a sales representative for Neurovative Technologies, a Canadian manufacturer of medical devices that use vibration to relieve chronic pain. These “Vibrant” devices sell for about $300 each and, we were told, “have been able to decrease pain and stiffness and increase range of motion in 95% of our OA, RA and Fibromyalgia patients.” The company was invited and agreed to provide a Vibrant device for back pain at no cost to PNN columnist Arlene Grau for a test run. Arlene suffers from fibromylagia and rheumatoid arthritis.)

By Arlene Grau, Columnist

There are many people who suffer the same pain day in and day out with little to no relief from medication, acupuncture, medical devices, etc. My pain begins in my back and spreads throughout my body. Recently, I was asked to give a drug free and non-invasive device called Vibrant a try to see if it helped with some of the pain I was suffering from. I received the device that is designed for back pain management.

During my time using the device, which was about two weeks, I have found that there is no change in my pain level or relief for my back pain.

The device is recommended for use in 16 minute sessions.  It can be used as many times as you'd like during the day, however it is not recommended that anyone use it for an extended period of time all at once.

It is extremely easy to use. You just push the “on” button and it does all the work. It also comes with a charger and backpack for storing or carrying, which I thought was pretty neat.

The Vibrant device reminded me of a massage chair, but I kept wanting to raise the level of intensity and couldn't because it doesn't come with that feature.

It did however help relieve minor aches and pains related to everyday life. My husband even tried it and said that he found it to be relaxing.

I also have a TENS unit which was prescribed by my pain management doctor and I feel like I get a lot more relief from that than the Vibrant device. As far as being able to target my pain and getting deep down into the problem areas, I feel like the Vibrant device fell short.

It's possible that it's meant for smaller aches and pains, but as far as rheumatoid arthritis and fibromyalgia patients go, there really are no minor pains related to our diseases.

Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

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.

Wireless LED Device Could Block Pain Signals

By Pat Anson, Editor

Researchers say a new type of implantable wireless device could revolutionize the treatment of chronic pain by using light to block pain signals before they reach the brain.

In animal studies at Washington University School of Medicine and the University of Illinois at Urbana-Champaign, researchers used implanted microLED devices to “light up” peripheral nerve cells in mice. Their study is published online in the journal Nature Biotechnology.

"Our eventual goal is to use this technology to treat pain in very specific locations by providing a kind of 'switch' to turn off the pain signals long before they reach the brain," said co-senior investigator Robert Gereau IV, PhD, a Professor of Anesthesiology and director of the Washington University Pain Center.

Unlike spinal cord stimulators, which also mask pain signals to the brain, the new devices are  soft and stretchable, and can be implanted in parts of the body that move. Spinal cord stimulators have to be anchored to bone.

"When we're studying neurons in the spinal cord or in other areas outside of the central nervous system, we need stretchable implants that don't require anchoring," said Gereau.

image courtesy gereau lab/washington university

Gereau and his colleagues are experimenting with mice that are genetically engineered to have light-sensitive proteins on some of their nerve cells. The wireless implants contain microLED lights that use “optogenetics” to activate specific nerve cells. The devices are thin, flexible, and minimally invasive because they can be implanted in soft tissue.

Earlier versions of the device used remote lighting and fiber optic delivery systems that were tethered to power sources and could not be fully implanted.

Because the new devices are small, flexible and can be held in place with sutures, they have potential uses in or around the bladder, stomach, intestines, heart or other organs, according to John Rogers, PhD, a professor of materials science and engineering at the University of Illinois.

"They provide unique, biocompatible platforms for wireless delivery of light to virtually any targeted organ in the body," said Rogers.

Rogers and Gereau designed the implants with an eye toward mass production of the devices so they could be available to other researchers. They’ve formed a company called NeuroLux to aid in that goal.

According to iData Research, the spinal cord stimulator (SCS) market was valued at $1.3 billion in 2014. The company estimates that less than 10% of potential patients are being treated with an SCS device.

Stimulators are often considered the treatment of last resort after opioid pain medication, physical therapy, steroid shots and other types of treatment fail. Many patients are reluctant to get SCS devices because the surgery is so invasive.

How I Use Exercise to Manage Chronic Pain

By Fred Kaeser, Guest Columnist

My dilemma may not be yours. I can only speak for myself. But when my intermittent severe pain became everyday severe pain, I felt I had a choice to make. Find a doctor that would prescribe me enough opioids everyday so that my horrible pain could be reduced considerably… or…decide that the risks of using opioids on a regular, constant basis outweigh the benefits.

When making this risk-benefit analysis, I needed to explore as best I could the empirical evidence on both sides of the opioid debate. Just as important, I needed to look at the evidence concerning alternative pain management strategies such as exercise, physical therapy, nutrition, yoga, mindfulness visualizations, and the like.

I am 63 years old and am in severe pain on an everyday basis. I have severe cervical spinal stenosis, multiple osteophytes impinging on my thecal cord, severe spondylosis, and multiple discs that have been severely compromised. I have osteoarthritis throughout my body. My hips have been replaced and one will need revision surgery fairly soon. My knees are shot. My lumbar spine is not as bad as my cervical, but multiple discs are herniated, the stenosis is in the moderate range.

I have crawled around on the floor many times for days and even weeks at a time since I was 25. I also have intermittent, but infrequent bouts of intercostal neuralgia, where it feels like the left side of my ribs are on fire. But without question, my cervical spine is the worst of them all.

      fred kaeser

I was determined to be an educated consumer in my quest to relieve pain, but time was of the essence. It’s brutal being in constant severe pain. It not only hurts, it’s exhausting. Fighting the hurt, trying to stay positive, trying to do your daily stuff, trying to be friendly, just trying to smile becomes harder and harder. .

I had done enough periodic trials of opioids to know several things. They work. But then at a certain point they don’t work as well. Even upping the dosage works for only so long. I can take an opioid for breakthrough pain or an extended release opioid, but the weird haze I’d get, the strange cloudy, foggy feelings I have, I never felt normal doing them.

I mean, is that what I want to feel like for years to come? I hate the pain, but the opioid cloud from any extended use I hate also. And the risks: tolerance, dependence, respiratory distress, sexual disruption, and constipation. That last one can be a bitch. I didn’t want to live in pain. but I didn’t want the risks and that overall crap feeling that opioids presented me. So the search for alternative pain therapies was on.

Let me first say I had to have the right attitude. “Stinkin-thinkin” is out, or as my meditation expert friend says, “If you “awful-ize” regularly you will feel awful.” I cannot emphasize enough the benefit of staying upbeat. I’m not stupid, I get it. You feel horrible, you feel like crap, you want to crawl out of your skin. But I have a choice; get swallowed up in negative thoughts and that is where I’ll stay, or stay as positive as I can and that is where I’ll stay. Not easy by any means, but it is the only means for me.

I was always athletic but I smoked. Smoked from 24 years of age to 56. That had to stop. When I had my second hip replacement I said I would quit right as I entered the hospital. I did and I could write a book on that fun trip.

I knew my diet would have to change. Didn’t want anymore extra weight and I knew I needed to increase my intake of foods that reduce inflammation. I love hot peppers, love those oily fish, those greens like spinach, kale, collard greens, those whole grains, and those almonds (but gotta watch the calories).

It took hard work to stop smoking and change my diet. And there was still a whole bunch more to come. I wanted to exercise more, I wanted to do my physical therapy exercises and stretches regularly, I wanted to give basic yoga posturing a try, I wanted to do some sort of meditation/positive visualizing practice.

I had read about all the benefits these could offer and I also knew it wouldn’t come quick. THIS IS THE HARD PART. I knew I would have to stick with it. I know too many people who say they’re going to make changes in their health status and do not stick with it. They’re in abundance after all those New Year’s resolutions every January, right? I’ve been one of them any number of times! It’s much easier to stop all the hard work and a whole lot easier to just take the pills.

But not this time. I knew that if my chosen alternative pain strategies were to work, I would have to be loyal to them and I would have to give them time. A lot of time, like 3-6 months of everyday, regular time. I have a family, I was working, I had all the stuff that comes with life, and now I had to fit a bunch more things in. I had to get up earlier than before, I had to spend an hour and half to two hours at night after work doing things I hadn’t before, and I had to fit these things into my weekends as well.

My Exercise Regimen

I had a YMCA membership and it’s amazing how many free or very low cost add-ons they provide. Yoga was free. Fairly low cost trainer sessions. My insurance covered a certain amount of physical therapy. A colleague-friend at work was a meditation expert. I get a lot of free senior citizen exercise and healthy activity benefits from the town I live in.

I started an exercise regimen that included cardiopulmonary exercise, weight training, and core exercise. I do an hour and half a day, 6 days a week. The myriad PT exercises and stretches I learned had to be done every day, 7 days a week as well. I don’t do all I know every time, but I usually spend about 20 minutes to a half hour on these.

The meditation/visualization I do is a form of guided imagery. Real easy to learn and real calming to do. I conjure peaceful, beautiful images for a 15 minute period in the morning and before bed I do 15 minutes of a mindfulness type experience where I am aware of positive thoughts, feelings, and images. I try to put my pain into a corner and focus on just the other things.

The yoga may give me the most benefits. I just do poses and stretches. I incorporate most of them in my daily workout routine and at times combine them with my PT work. All nothing real fancy, or too in-depth, but just enough of the basics to really help.

I lost count how many times I would bitch and complain in the beginning. How many times did I feel all this stuff was a waste? How many times would I curse them? How many times my pain hurt when I did them? How many times was my pain worse right after them? How many times did I want to give up? How many times did I want to just take the opioids? The answers: MANY!

A month went by…two months…three months…and I started to actually feel better. My pain was being mitigated. Six months and they worked even better. And now, almost 7 years later, they work better than ever. And my opioids? I am prescribed oxycodone, but I only take it every other day or every two days. I try to allocate myself no more than 10 pills a week.

Do I still have pain? Yep. Do the opioids help? Yep. In fact, when I take them they work as effectively as the first day I started taking them. I know I could easily do more and, considering the level of pain I have, they are easily warranted. But my pain is mitigated by my alternative pain management and my opioid use is minimized.

Just as important, there has been another benefit. The cervical spine surgery that I should be eligible for I don’t have to do because my functioning is normal. You don’t do this surgery unless your functionality suffers considerably.  Removing 2-3 discs, shaving down multiple osteophytes, and fusing 3-4 vertebras pose considerable post-op risks and perhaps even more pain. I’ve been told that my function is so good because of all the exercises I do, so no surgery for now.

Like I said, I can only speak for myself. But I have found a very effective balance to mitigating my pain through alternative pain management and the limited use of opioids. I still have pain every day but I manage it with a lot of hard work.

I know there are many people out there that must take opioids every day. And they should be provided with them. But I felt that I would be cheating myself if I didn’t do my best to mitigate my pain through alternative means.

I always have to be honest with myself. Am I doing all I can to ease my pain other than by taking opioid medication?

Fred Kaeser, Ed.D, is the former Director of Health for the NYC Public Schools. He taught at New York University and is the author of "What Your Child Needs to Know About Sex (and When): A Straight Talking Guide for Parents." Fred enjoys exercising, perennial gardens, and fishing.

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

Women More Likely to Get Addicted to Pain Meds

Pat Anson, Editor

Over half the women being treated for addiction at methadone clinics in Canada say their first experience with opioids was a pain medication prescribed by a doctor, according to a new study.

Researchers at McMaster University in Hamilton recruited over 500 men and women being treated for opioid dependence at 13 clinics in Ontario. The aim of the study, which is published online in the journal Biology of Sex Differences, was to identify any significant gender differences between men and women attending the clinics. Participants provided researchers with detailed information about their health and lifestyle, as well as urine tests to measure their use of illicit and legal drugs.

Compared to men, women were found to have more physical and psychological health problems, more childcare responsibilities, and were more likely to have a family history of psychiatric illness.

While over half the women (52%) and about a third (38%) of the men reported doctor-prescribed painkillers as their first contact with opioids, only 35% of participants said they suffered from chronic pain during the study period.

"It's not clear why women are disproportionately affected by opioid dependence originating from prescription painkillers - it could be because they're prescribed painkillers more often due to a lower pain threshold, or it might simply be because they're more likely than men to seek medical care,” said lead author Monica Bawor of McMaster University.

“Whatever the reasons, it's clear that this is a growing problem in Canada and in other countries, such as the U.S., and addiction treatment programmes need to adapt to the changing profile of opioid addiction."

Only about a third (36%) of the study participants were employed or had completed a high school education (28%).

Men were more likely than women to be employed, and were more likely to smoke cigarettes. Men were also more likely to report having smoked marijuana, although rates of marijuana use were relatively high among both men and women, Nearly half (47%) said they had used marijuana in the month prior to the study.

"Most of what we currently know about methadone treatment is based on studies that included few or no women at all. Our results show that men and women who are addicted to opioids have very different demographics and health needs, and we need to better reflect this in the treatment options that are available,” Bawor said.

"A rising number of women are seeking treatment for opioid addiction in Canada and other countries yet, in many cases, treatment is still geared towards a patient profile that is decades out of date - predominantly young, male injecting heroin, and with few family or employment responsibilities."

Compared to studies from the 1990s, the average age of patients being treated for opioid addiction is older (38 vs. 25 years of age), and patients also started using opioids at a later age (25 vs. 21 years). There was a 30% increase in the number of patients becoming addicted to opioids through doctor-prescribed painkillers.

The number of opioid painkiller prescriptions has doubled in Canada over the last two decades. According to the World Health Organization, Canada consumes more opioid painkillers per capita than any other country.

Are Opioids or Economics Killing White Americans?

By Pat Anson, Editor

Opinions are all over the map about a recent study by two Princeton University researchers, who estimate that nearly half a million white Americans died in the last 15 years due to a quiet epidemic of pain, suicide, alcohol abuse and opioid overdoses.

The husband and wife research team of Angus Deaton and Anne Case were careful not to point a finger at any one cause, but speculated that financial stress caused by unemployment and stagnant incomes may be behind the rising mortality of middle-aged whites. The deaths were concentrated in baby boomers with a high school education or less.

But some were quick to blame the “opioid epidemic.”

“An opioid overdose epidemic is at the heart of this rise in white middle-age mortality,” wrote psychiatrist Richard Friedman, MD, in an editorial that appeared in the New York Times under the headline “How Doctors Helped Drive the Addiction Crisis.”

“Driving this opioid epidemic, in large part, is a disturbing change in the attitude within the medical profession about the use of these drugs to treat pain,” said Friedman. “It is physicians who, in large part, unleashed the current opioid epidemic with their promiscuous use of these drugs; we have a large responsibility to end it.”

And what should doctors do to end the epidemic?

Friedman said there was “strong evidence” that Motrin, Tylenol and other nonsteroidal anti-inflammatory drugs (NSAIDS) were “safer and more effective for many painful conditions than opioid painkillers.”

The Fresno Bee took a more nuanced view of what it called “the epidemic of pain and heartbreak.”

“If ever a set of numbers cried out for deeper examination, it is this one. Human frailty may be epidemic, but surely it is also no surprise that a generation raised with the expectation of a secure future might sink into depression, hostility, illness, anguish and rage when that future fails to transpire,” The Bee said in an editorial. “Whether the solution is better jobs, cheaper schools, more mental health care or less reliance on painkillers, the distress of America’s white working class has become a public health crisis.”

“White Americans who used to be able to support a family are now struggling even in dual income households, and there's a corresponding loss in stature and self-esteem. They are turning to prescription opioids in greater numbers than minorities,” said the Baltimore Sun. “The transition to a 21st (century) economy is literally killing some people, and the United States can ill afford to ignore this disturbing development.”

Overseas news outlets also tended to blame the rising death rate on a “ruthless economy.”

“These people are dying because history has unexpectedly thrown them on the scrapheap,” said The Guardian. “White baby boomers had high expectations of the future, yet many of them have lived to discover that they will be worse off than their parents.”

“(The) findings should awaken Americans to the price we pay for pursuing economic policies that enrich the few at the expense of the many,” said David Cay Johnston in a column for Al Jezeera America. “The harsh reality is that our economy is in many ways stuck in 1998 and that for poorly educated Americans, the economy has become a living nightmare with no expectation of a brighter tomorrow. The rise in drug and alcohol poisonings as well as the rising tide of suicides should not surprise. But these trends should disturb.”

What do you think? Is the economy to blame for the increasing number of deaths? Or is it opioids?

Exercise Improves Pain and Mobility of Seniors

By Pat Anson, Editor

A low-impact exercise program can significantly reduce pain and improve mobility for older adults with arthritis and other musculoskeletal conditions, according to the Hospital for Special Surgery (HHS) in New York City.

For several years HHS has offered exercise programs at senior centers in Chinatown, Flushing, and Queens – and tracked the health of those who participated. The hospital’s most recent findings are being presented at the annual meeting of the American College of Rheumatology/Association of Rheumatology Health Professionals in San Francisco.

"Getting seniors to be active in any way will generally improve their quality of life and help them function better in their everyday activities," said Linda Russell, MD, a rheumatologist and chair of the Public and Patient Education Advisory Committee at HHS. "People believe that if you have arthritis you shouldn't exercise, but appropriate exercises actually help decrease pain."

The eight-week exercise programs began in 2011 and are held once a week. They were originally developed for Asian seniors 65 and older, many of whom lived in poverty and suffered from musculoskeletal conditions.

The low-impact exercises included pilates, yoga, yoga-lates (a combination of yoga and pilates), t’ai chi and dance, and were led by certified instructors.

In surveys of over 200 participants, most reported that they experienced less pain and were better able to perform activities of daily living. Muscle and joint pain were reduced by nearly a third and mobility improved dramatically:

• 88% more participants could climb several flights of stairs
• 66% more participants could lift/carry groceries
• 63% more participants could bend, kneel, or stoop
• 91% of participants felt the program reduced their fatigue
• 97% of participants felt that the program reduced their stiffness
• 95% of participants felt their balance improved
• 96% of participants felt more confident that exercising would not make their symptoms worse

"The study results indicate that the hospital's Bone Health Initiative has a positive impact on the musculoskeletal health of the Asian senior population," said Huijuan Huang, MPA, program coordinator. "Providing free exercise programs to the community can play an important role in helping adults manage musculoskeletal conditions."

An earlier study at HHS found that exercise decreases pain, reduces the severity and frequency of falls, and improves the balance of people suffering from osteoarthritis. Exercise also improved their quality and enjoyment of life.