PBS Documentary Brings Chronic Pain Out of Shadows

By Pat Anson, Editor

Many chronic pain sufferers are frustrated with how they are depicted in the media – often as lazy, whining, drug seeking addicts.

A new documentary that's begun airing on local PBS stations is trying to change that narrative.

“I wanted to give a voice to people who live in the shadows. People in pain are often ignored and treated as outcasts or druggies,” says Lynn Webster, MD, a leading expert on pain management, past President of the American Academy of Pain Medicine, and co-producer of “The Painful Truth”

LYNN WEBSTER, MD

“The film tries to demonstrate the lack of humanity that exists today towards people in pain. It also reveals some of flaws in our public policy that has contributed to the current pain and addiction crisis. I hope that the film will be a seed for a cultural transformation in attitudes and respect for the most hurting among us.”

The hour-long documentary is a sequel to Webster’s 2015 award-winning book, The Painful Truth, in which he shares the personal stories of chronic pain patients he treated for over 30 years in the Salt Lake City, Utah area. 

Webster may be retired now as a practicing physician, but he’s determined to have pain sufferers treated with more compassion and respect, not only by the media, but by government, regulators, insurers and their own doctors.

“I've had patients who begged me for alternatives to opioids when their insurance wouldn't cover anything else that would give them relief,” says Webster. “I've had patients who could not find a respite from their pain and chose to end their suffering by taking their own life. I've cried with, and comforted, the caregivers of my patients, people who are on the front lines every single day doing everything they can to help their loved ones regain the life they once knew.”

Webster and co-producer Craig Worth traveled over 70,000 miles gathering stories from patients and documenting their daily struggles. They also interviewed caretakers, doctors, patient advocates, addiction specialists and law enforcement officers.

The Painful Truth has already aired in a number of markets. For a listing of PBS stations and air dates, click here.  

The documentary can also be watched online, courtesy of PBS in Montana, by clicking here.

Webster is encouraging pain sufferers to reach out to their local PBS stations and ask them to broadcast The Painful Truth. He says when documentaries air on local public television, it is common for the host station to include a panel discussion with community members.

“If your local public station decides to air this documentary and you would be willing to make yourself available for a panel discussion, I would encourage you to reach out to your station to offer your participation. It could be a great opportunity to discuss how important it is to transform the way pain is perceived, judge and treated,” Webster says.

“I am realistic about the film. It won't be the solution, but it may open some eyes and more importantly some hearts that could result in better pain care in America.”

For a preview of The Painful Truth, watch the clip below:

3 Things You Need to Know About Opioid Pain Meds

By Janice Reynolds, RN, Guest Columnist

A recent guest column on PNN suggested that we need to admit opioid medications are dangerous.  Yes, they can be dangerous, but the bigger question is why are they singled out for “special” treatment? 

All medications have the potential to be dangerous, yet opioids are the only class of medication being treated as if they are the gateway to Armageddon.  Due to “fake news” and “alternative facts,” many see opioids as bad for acute pain, as well as persistent pain.

This hysteria has even affected the use of opioids to treat non-pain medical conditions -- one being as a first line therapy for potential heart attack or heart failure. Opioids cause blood vessels to dilate and lower blood pressure; getting more oxygen to the heart, decreasing anxiety, and reducing the risk of a heart attack. 

Chemotherapy drugs and bio-therapies are all very dangerous medications, causing a variety of injurious side effects, as well as secondary cancers in some cases.  Generally, when given in a hospital setting, precautions are needed to prevent others from being exposed to them. Typically, these are used for cancer, but they also have non-cancer uses and for some pain syndromes; such as methotrexate for rheumatoid arthritis. 

After a cancer is cured or in remission, many patients are left with pain disorders caused by the cancer or medication.  Because they no longer are seeing an oncologist, many recovering cancer patients are not able to get their “chronic pain” treated, especially with opioids.

Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen have long been known to be dangerous. They are black boxed by the FDA for cardiac events and gastrointestinal bleeding. Nephrologists will tell you they are the leading cause of chronic kidney failure. They can also potentiate heart failure. 

These side effects are not from overdosing, but can occur even when taken as prescribed.  Most side effects are not even included on the label of over-the-counter ibuprofen. It has been estimated 20,000 people a year die from ibuprofen. 

As a colleague said to me years ago, “If I prescribe an NSAID and the person dies, nothing will happen to me.  If I prescribe an opioid and they die I will be investigated.”

Safety is a huge issue with any medication, especially in older adults. As we age, our metabolic and elimination systems become less effective, and there is an increase in comorbid conditions that frequently results in more medications. 

The Beers Criteria has been around since 1991, with the last revision in 2012.  It lists medications which should not be used or rarely used by older adults.  These are medications that are inappropriate, potentially dangerous, and can worsen serious health conditions.  The list is evidenced based. NSAIDs are on it (and have been for a long time) while opioids, except for Demerol and Darvon (no longer on the market), are not. A few other medications used for pain, such tricyclic antidepressants (TCAs) are on the list as well. 

Taken in excess, acetaminophen (Tylenol) can damage the liver, heart medications can permanently damage the heart, and blood pressure medication or any drug which causes sedation can lead to death.  

Drug Interactions

Overdose deaths involving opioids are nearly always in someone who is opioid naïve or taken in combination with other medications or alcohol. Interactions between alcohol and other medications can frequently cause problems and may even be fatal.  

If alcohol and opioids are taken together and a problem develops, why is the opioid held at fault? Medications which cause sedation are the likeliest culprits to cause a fatal interaction with opioids. Alcohol interacts with nearly all medications, some worse than others. 

Other medication interactions can increase how a drug works or decrease its effectiveness.  NSAIDs and many other non-opioid pain medications have a higher risk profile for interacting with other drugs. TCA and anti-arrhythmics have a fatal interaction potential, for example.  Pregablin (Lyrica) has 26 potential major interactions.  NSAIDs interact with several medications, including antidepressants (SSRIs) and anticoagulants.

Opioids do not by themselves cause addiction. However, some people have the potential to become addicted to them, especially if they have an addictive personality.  Many other medications can also lead to addiction, such as benzodiazepines, barbiturates, amphetamines (e.g. Adderall), and caffeine.  Alcohol and nicotine are the leading potentially addictive drugs.

Physical dependence should never be confused with addiction, as they are two separate issues.  This misunderstanding about opioids and addiction has been long standing.  Many of us who have cared for dying patients have had a family member worry about their loved one becoming addicted, even when days away from death.

Opioids have a long history of relieving pain and it is untrue there is a lack of evidence concerning their use.  One of the difficult things with any medication, including opioids, is the fact that not everyone responds to them the same way or at the same dose.  For example, while some will respond to opioids for fibromyalgia or migraines, most do not.

The most insulting, cruel, demeaning and wrong thing someone can say to a person in pain is “You only think it works for you.”

There is no pain syndrome called “chronic pain.” And separating non-cancer pain from cancer-related pain is irresponsible and morally wrong. 

From the Journal of Pain Research:

"These claims are primarily philosophical, rather than medical or physiologic. As mentioned, pain mechanisms do not discriminate between cancer and noncancer pathophysiology. Patients with cancer or those without cancer have essentially identical pain-generating physiologies, and thus the same mechanisms for the development of their pain (eg, inflammatory pain in a cancer patient will be the same physiological process as in a noncancer patient). Further, cancer patients are living longer and their original pain generators become chronic pain in and of themselves, little different from patients without cancer."

So why should we have this discussion? Three reasons:

1. It is said we should accept erroneous beliefs and statements because this is what “everyone” believes based on opioid phobia, and to not do so would make us appear stupid. But who is being stupid here?
2. To emphasize the fact that no other medication is being restricted and villainized the way opioids are. This is based on opioid phobia, and the prejudice and bigotry shown towards people in pain.  Benefits and risks are a discussion between the patient and a knowledgeable provider, and should not be the purview of regulators, the media, politicians or opioid-phobics. 
3. Everyone needs to be knowledgeable about the dangers associated with medications. Few providers do a good job catching potentially dangerous interactions.

The worst case scenario is that people in pain are dying and some are being arrested after being denied effective treatment in emergency rooms.

I repeat: The benefits and risks of opioids need to be left to the patient and their doctor.

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 different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

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

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

Finding Meaning and Purpose While Living with Pain

By Pat Akerberg, Columnist

Have you ever wondered if your life still has meaning and purpose?

Who makes that call, you or someone else for you?  It’s an important question to consider. 

Until a recent column, I had never experienced someone else (especially in the pain community) questioning my value and purpose in life. Or challenge what I do to provide meaning to it.

The column was about freedoms I’ve lost and the alternative ones I’ve had to find since my entry into a life dominated by debilitating pain.  A reader judged my acceptance about how I’d redistribute my limited energy capacity as my being a “selfish wanker avoiding life.”

Initially, I dismissed the uninformed judgment as just that.  But since then, I’ve chosen to write about it because judging a person’s journey in life, especially someone with pain, is such an easy way out compared to working to understand the serious impact pain has on the thousands of us living with it. 

Of course, everyone is entitled to their opinion and we can agree to disagree.  However, making the choice to turn a person’s personal pain experience into a judgment designed to diminish that person is the difference between being harmful or helpful.

So even though it’s not new for pain patients to be prematurely misjudged or undeservedly labeled by those who don’t understand what they deal with, that doesn’t grant that behavior acceptability. 

From experience, I know the kind of confusion and identity questions that can happen around value and purpose when a medical issue forever changes your life, plans and dreams.   

Seven years ago, when I had brain surgery for intractable trigeminal neuralgia I became one of the rare 1% to experience the most damaging, painful and devastating irreversible complication. 

Being abruptly sidelined from my professional work and all that I thought was essential to who I was had me wrestling with the value of my altered life. When that niggling question about meaning and purpose eventually rears its head (and it surely does), most people afflicted by chronic pain tend to be hard on themselves when pain levels dictate what they can accomplish.

What I’m describing isn’t unique to me.  Hundreds of thousands of us have life changing stories to tell.  The kind of stories that typically evoke empathy and compassion, stories that catapult us into a rude awakening that nothing in life is permanent.   

During various stages of my earlier life, any questions about life’s meaning or purpose seemed to have plausible answers.  That’s probably because I was engaged in what I was supposed to be “doing” then in my socialized roles. Those earlier stages of life tend to be about identity building.  It’s a process centered on exploring, defining, and constructing ones’ direction and purpose in life.

The importance of finding direction in life is stressed early on as part of what gives our lives purpose.  In a variety of ways, our achievement-oriented culture telegraphs messages that "doing" is king, trumps "being" and determines our value, worth, and success.

It’s not always a balanced approach to the whole of our lives though.

Still, we make a concerted effort to prepare ourselves for autonomy by working hard to carve out our niches in the world. Like many of you, I pursued my goals and checked many of the boxes that spell success. But external success in business or any other endeavor doesn’t comprise the whole of our lives or all of who we are.

In mid-life when trigeminal neuralgia hit, I wasn’t ready to stop working or give up that identity.  Nor was I prepared for all the other losses that would continue to follow. Being prematurely thrust into taking stock of the meaning and purpose of life carries unusual significance.

Having to whittle down your life and reconstruct your identity is a blow. So are the losses that follow.  It can be demoralizing to admit that there’s much we can no longer “do” or handle in the same way.

Learning to befriend and value the “being” aspects of who we are takes time, encouragement, supportive people, and inner fortitude. You need to work through the internal inventory taking and conflicting dialogue that surrounds the shift in focus.

Internal hard work like that isn’t always visible or discernible to someone on the outside looking in. That’s why careless judgments or erroneous inferences often miss the mark.

Thankfully, I have been fortunate to experience the positive impact that encouragement, support, and understanding can bring at a time when it’s sorely needed. I’ve also watched hope rise, albeit a revised version, within others when they receive support from family, friends and like-minded, compassionate pain counterparts. 

That kind of unconditional human regard has solidified my belief that who we are as human beings, not just human doings, is the nucleus of what cultivates meaning and purpose in our lives. 

We become our best selves when we become aware of the kind of person we want to be and act accordingly.  Those thoughtful behavioral choices and values determine the quality of our relationships with our selves and others in our wider human circle. 

Otherwise, our unconscious choices and actions can carry unfortunate blind spots with many unintended consequences. 

What matters most to one person may matter little to another.  There’s no one-size-fits-all answer that can possibly address the personal interpretation each of us has about what’s meaningful or purposeful.  

Given that reality, whether your life holds meaning or purpose can only be your call to make.

The misplaced judgment that any one of us altered by pain is lazy or selfish is beautifully countered by poet David Whyte (in Sweet Darkness) when he writes, “Anyone or anything that does not bring you alive is too small for you.” 

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.

Pat draws from her extensive background as an organizational effectiveness consultant who coached and developed top executives, mobilized change initiatives, and directed communications.

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.

Do Opioids Raise or Lower Risk of Suicide?

By Pat Anson, Editor

Robert Rose has little doubt what the fallout will be from tougher guidelines for opioid pain medication being adopted by the Departments of Defense and Veterans Affairs. The 50-year old Marine Corps veteran calls the guidelines a “death sentence” for thousands of sick and wounded veterans like himself.

“Suicides are going to increase. No doubt about it. Alcoholism is going to increase. Veterans dying from accidental overdoses are going to increase. Deaths caused by veterans turning to street drugs are going to increase,” says Rose.

The VA and the Pentagon released the new opioid guidelines for veterans and active duty service members last month. (See “Tougher Opioid Guidelines for U.S. Military and Veterans”). It urges VA and military doctors to taper or discontinue opioids for patients on high doses, and strongly recommends that no opioids be prescribed for chronic pain patients under the age of 30.

Some VA doctors didn’t wait for the new guideline to be released. Rose, who suffers from chronic back pain due to service related injuries, was on a relatively high dose of morphine for 15 years before he was abruptly taken off opioid medication by his doctor last December.

Rose is in so much pain now that he rarely leaves the house.

“People cannot live in the amount of pain that I’m doing. They can’t do it. It’s just unimaginable to think that people can survive at this level for any length of time and be denied pain care,” Rose told PNN.

“Many, many, many days I was asking God to take me home because I couldn’t deal with the pain anymore.”

robert rose

Suicidal thoughts are not uncommon in the veteran community. Over half the veterans being treated at VA facilities suffer from chronic pain, as well as high rates of depression and post-traumatic stress disorder.  A recent study by the VA estimated that 20 veterans killed themselves each day in 2014.

Some have associated the high rate of suicide with opioid pain medication. The new VA guideline recommends that patients be closely monitored for suicide risk during opioid therapy, especially if they have a history of depression or bipolar disorder.

But there is no mention in the 192-page guideline that undertreated or untreated pain can also be a risk for suicide. The guideline is actually dismissive of suicide risk in patients being weaned off opioids:

“Some patients on LOT (long term opioid therapy) who suffer from chronic pain and co-occurring OUD (opioid use disorder), depression, and/or personality disorders may threaten suicide when providers recommend discontinuation of opioids. However, continuing LOT to ‘prevent suicide’ in someone with chronic pain is not recommended as an appropriate response if suicide risk is high or increases.”

Do Opioids Raise Risk of Suicide?

Are suicidal patients better off without opioids, as the guideline suggests?

“When I’m doing clinical work, that’s a question that I face on almost a daily basis,” says Mark Edlund, MD, a Utah psychiatrist who treats patients with chronic pain, mental health and substance abuse problems. “If people are being prescribed opioids, does that increase their risk for suicide?”

Edlund co-authored a recent study published in the American Journal of Public Health, which found that the number of suicides involving opioids more than doubled from 1999 to 2014, a period when opioid prescribing sharply increased.     

“There’s a good theoretical reason to think they are linked. Opioids can easily cause death. We know that opioid prescriptions have been going up,” says Edlund. “To me the results make complete sense. And they fit within a model you could make of increased access to opioids would increase suicide.”

Edlund, who is a research scientist with RTI International, co-authored the study with Jennifer Braden, MD, and Mark Sullivan, MD, both researchers at the University of Washington. Sullivan is a longtime critic of opioid prescribing practices and a board member of Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group.

Edlund is not a member of PROP, but has participated in some PROP research studies and says he is "largely in agreement" with the group's goals.

While his study found an association between opioid medication and suicides, Edlund admits it failed to prove causation – definitive proof that opioids contribute to suicidal thoughts or actions. In fact, recent research indicates that less than 5 percent of the attempted suicides in the U.S. involve opioids.  

“If you really wanted to get into causality, that would be very difficult to assess,” he said.  “I think there are competing explanations. What may be true for one person may not be true for another. Maybe for some people opioids are not helping with their pain and they’re worsening depression. But on the other hand, I’m sure there are some people that are using opioids and it improves their functioning and decreasing their pain. That part is hard to disentangle.”

The United States has seen a disturbing increase in suicides for over a decade. In 2014, nearly 43,000 Americans committed suicide, over twice the number of deaths linked to accidental opioid overdoses.

Most often suicides are blamed on depression, mental illness, financial problems, or drug and alcohol abuse. No statistics are kept on how many Americans kill themselves due to untreated or poorly treated pain, but there are a growing number of anecdotal reports of patients killing themselves after having their opioids reduced or eliminated (see “Chronic Pain Patient Abandoned by Doctor Dies”).

“I can't go on like this,” Bianca recently wrote to PNN. “They've cut my medicine to less than half of what I was taking.  I also have had suicidal thoughts, but pray to God that I don't.”

“I think of killing myself every day since… my doctors stopped prescribing (opioids). Why have they not been looking at this very issue, which is pain?” asked Tom.

“I will kill myself if they take me off it. Barely helps my pain anyways. The new anti-opiate laws by the government will cause my death,” wrote another pain patient. “I am certain many others will commit suicide.”

“I have suicidal thoughts every day since being taken off opioids. Life was bad before, now it is hell,” said Thomas. “Let’s place an ice pick in these doctors’ spines and see how long they last 24 hours per day, seven days a week. These ivory tower idiots would have a quick change of mind.”

Those are the patients that Mark Edlund worries about.

“That’s the personal clinical issue that I wrestle with. Which of those patients that I see will the opioid increase risk of suicide or decrease it? If it’s a legitimate pain patient who benefits from opioids, then yeah, it’s going to decrease the risk,” he said.

Do Opioids Lower Risk of Suicide?

Researchers in Israel recently found that very low doses of an opioid actually reduce suicidal thoughts. Patients in four Israeli hospitals – most of whom had a history of suicide attempts – had a significant decline in suicidal ideation after being given tiny doses of buprenorphine (Suboxone), a medication widely used to treat addiction.

“The study could not prove that opioids treat mental pain—it wasn’t designed to do so—but it did show that buprenorphine decreases suicidal ideation.  Perhaps the study’s most important contribution is its implication that treatments that help us withstand mental pain may prevent suicide,” psychiatrist Anne Skomorowsky wrote in Scientific American.

“(The) study provides a rationale for thinking about opioids in a new way. More than that, it suggests that interventions that increase our capacity to tolerate mental anguish may have a powerful role in suicide prevention.”

Suicide is a topic that is rarely addressed in the national debate over the so-called opioid epidemic. But as efforts continue to restrict or even eliminate opioid prescribing, patients like Robert Rose warn that we could be exchanging one epidemic for another.

“Them taking the pain meds away (from me) was God kicking me in the ass and telling me to get back into the world of the living. Now I have something to fight for,” says Rose, who bombards politicians, government officials and regulators with a steady stream of emails warning of the harm opioid guidelines are causing.

“Unfortunately since the VA adopted the CDC guidelines this is exactly what many veterans have done… turned to suicide. And with Medicare/Medicaid considering adopting the same policies, those suicides, your families, friends and neighbors, will spill over into the civilian populace with staggering implications for many,” Rose said in a recent email.

“Instead of tens of thousands of veterans being affected, it’s going to be tens of millions. And the loss of life is going to be devastating to families, communities and to the workforce.” 

Can Reading Help Relieve Chronic Pain?

By Pat Anson, Editor

A good book is not only hard to put down -- it may also help relieve symptoms of chronic pain by triggering positive memories, according to a small British study.

Researchers at the University of Liverpool brought together a group of ten people with severe chronic pain once a week to read literature together aloud. The reading material included short stories, novels and poetry, and covered a wide variety of genres and topics.

While passages were read aloud in the “Shared Reading” exercise, regular pauses were taken to encourage participants to reflect on what is being read, on the thoughts or memories it stirred, and how the reading matter related to their lives.

Researchers compared the Shared Reading group to another group practicing a form of cognitive behavioral therapy (CBT).

While participants in the CBT group were encouraged to manage their emotions by focusing on the pain experience, Shared Reading encouraged pain sufferers to recall positive memories from their past before the onset of chronic pain.

"Our study indicated that shared reading could potentially be an alternative to CBT in bringing into conscious awareness areas of emotional pain otherwise passively suffered by chronic pain patients,” said Josie Billington, a researcher at the University’s Centre for Research into Reading, Literature and Society.

"The encouragement of greater confrontation and tolerance of emotional difficulty that Sharing Reading provides makes it valuable as a longer-term follow-up or adjunct to CBT's concentration on short-term management of emotion."

Researchers say Shared Reading has a therapeutic effect because it helps participants recall a variety of life experiences -- from work, childhood, family and relationships -- not just memories that involve chronic pain.

The study, published in the BMJ Journal for Medical Humanities, was funded by the British Academy.

While many pain sufferers are deeply skeptical of CBT, meditation and similar forms of “mindfulness” therapy, there is evidence that they work for some. A recent study found that CBT lessened pain and improved function better than standard treatments for low back pain.

Another study at Wake Forest University found that mindfulness meditation appears to activate parts of the brain associated with pain control.

How the CDC Opioid Guidelines Affected Me

By Sarah Irvine, Guest Columnist

I'm 42 years old and have been suffering from chronic pain for the past several years. I was injured at work almost 8 years ago and, like many others, I have been affected by the CDC opioid guidelines.

I have herniated and bulging discs in my lower back, scoliosis and I ambulate with a cane. I have Protein C deficiency, a blood clotting disorder, and I am not a surgical candidate.

I live with excruciating pain and my pain medication, morphine sulfate, has been decreased from 150 mg daily to 45 mg daily. I also was recently prescribed Lyrica and baclofen, a muscle relaxer.

This does nothing to alleviate my pain. I'm becoming shorter, my spine is shaped like a serpent and my muscles are becoming more atrophied. Workers compensation refuses to pay for any more physical therapy and Medicare won't cover it either.

I'm certainly not able to pay out of pocket and at this point I'm in too much pain to function. Due to the Protein C deficiency, I should not take NSAIDs or steroids because they increase my risk of bleeding. I am also on a high dose of Coumadin for my blood disorder.

SARAH IRVINE

Things have gotten so bad because of the guidelines that my doctors are now telling me to take NSAIDs and are prescribing steroids; whereas before I was warned to avoid those medications and doctors refused to prescribe them for me.

I have never abused, misused, shared or sold my medications! It truly seems as though the CDC and DEA want to decrease the population of those who suffer from chronic pain by refusing patients adequate medical treatment and appropriate pain management.

I also believe that they hope those of us who are suffering will take our own lives, rather than try to endure the horrific chronic pain.

I'm on disability and no longer able to work because of my injury and the pain I endure. My quality of life has deteriorated to nothing. Some days all I can do is lay in bed. I can't even enjoy reading a book or watching a TV program without my pain interfering.

I do not understand why I and thousands of others in the same situation are being forced to suffer unnecessarily! We aren't criminals, drug dealers or addicts! We are victims of our pain!

Every aspect of my life is affected by my pain on a daily basis. I know I'm not alone. I only want to enjoy whatever is left of my life.

There are medications that would allow me and others to do so. Why are they being withheld from us? If we were animals, we would be treated more humanely than this.

I just want to know what I can do, who I can call, email or write to in order to get these abusive, inhumane laws changed. Also, is it possible to file a class action lawsuit against the DEA, CDC or both? Is there a class action lawsuit in place right now? If so, what can I do to get involved?

It's not about financial gain. This is about quality of life! What is happening right now is downright cruel, inhumane and criminal. I would be very appreciative if someone could lead me in the right direction so that I can do whatever is within my power, to get my life back and help others, before it's too late. I'm tired of being abused and victimized. I want my life back.

Sarah Irvine is from New York state.

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.

A Letter to Medicare From a Worried Pain Patient

Editor’s Note: This Friday marks the deadline for the public to comment on opioid prescribing guidelines proposed by the Centers for Medicare and Medicaid Services (CMS). As PNN has reported (see “Medicare Planning to Adopt CDC Opioid Guidelines”), the guidelines are likely to limit access to opioid pain medication for millions of Medicare beneficiaries. They would also empower insurance companies to take punitive action against pharmacies, doctors and patients that don’t follow the guidelines.

The following is a letter written in opposition to the CMS guidelines by Ms. Judith Botamer. She has graciously agreed to let us publish it here in the interest of getting more people to send their own comments to CMS. 

All comments should be emailed to CMS no later than March 3 to this address:

AdvanceNotice2018@cms.hhs.gov

To Whom It May Concern:

As a disabled chronic pain patient, I strongly oppose the Centers for Medicare and Medicaid Services’ plan to accept policies from the recent CDC Guideline for Prescribing Opioids for Chronic Pain. I implore you to take action so that this mandate does not become a reality for the 100 million Americans who suffer with chronic pain, including many on Medicare.

The CDC guideline is simply a voluntary guide intended for primary care physicians only. The CMS guideline as written gives no margin or credence to pain management doctors who already have strict opioid policies, as well as an established ongoing relationship with their patients.

Your currently drafted policy makes the guidelines mandatory for all doctors, patients and pharmacists, and imposes a ceiling on the highest dose of opioids that can be prescribed. This gives physicians no discretion in determining what is right for their patients. That was never the CDC’s intent, nor is it feasible to expect all chronic pain patients to be able to maintain the level of care that their doctor has established for them.

I am permanently disabled with neuropathy, RA, fibromyalgia, torn disks, TMJD and migraines, as well as many other pain conditions for which there is no cure. At the young age of 53, I sometimes feel my life is over. If not for pain control from opioid medication, it surely would become a reality.

I never asked to be overcome with this much pain from so many “invisible illnesses.”  As a prior athlete, I am challenged daily to accept the reduced quality of life for myself and, in turn, for my family. Fortunately, my empathetic pain doctor will prescribe me enough medication so that I am functioning. If my current regimen were to be lowered to the amount set forth in this guideline, I would not be able to fully care for myself, perhaps be bedridden, and be left with a dramatically diminished quality of life.

This mandate actually takes away my right to a quality of life that I deserve. The burden of being struck with legitimate pain conditions should not equate to the loss of a right to live life with dignity, just as any other patient with any other chronic illness.

Many doctors are now frightened of prescribing pain medication for fear the CDC, DEA or FDA would sanction their license, when they simply want to fulfill their oath of “do no harm.” And let's be clear, not prescribing pain medication to a patient who is suffering, is doing harm! Not only for the patient, but for our communities and society as a whole.

To this point, on June 1, 2016, Dr. Debra Houry, the director of the CDC’s National Center for Injury Prevention and Control, wrote the following:

“The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients to address chronic pain. Specifically, the Guideline includes a recommendation to try taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy. The Guideline is not a rule, regulation, or law. It is not intended to deny access to opioid pain medication as an option for pain management. It is not intended to take away physician discretion and decision-making.”
  

I truly hope that there is no collusion between the insurance industry and CMS in drafting your new “Opioid Misuse Strategy.” Taking pain medication away from a pain patient will not stop the criminals, drug cartels or addicts. Those issues are worlds away. Pain patients are not addicts or looking for a “high.” They depend on their medication just as a diabetic depends on insulin for life quality.

Please join me and become an empathetic advocate for the millions who suffer in silence as a result of just a few who break the law and displace attention away from the real tragedy: Pain patients being denied medical treatment, being treated as criminals, and their doctors being threatened for only doing the right thing!

For all of these reasons and more, CMS should not adopt or align your agency’s policies with the CDC Guideline, as it is apparent you have misinterpreted them.

Sincerely,
Judith A. Botamer

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.

The Magical Opioid Number

By Roger Chriss, Guest Columnist

Numbers can be impressive. They seem like powerful evidence or useful metrics in regulations and legislation.

In 2016, the Centers for Disease Control and Prevention issued its guidelines for opioid prescribing, setting a recommended daily limit on opioid doses at 90 morphine milligram equivalent (MME). Now the Centers for Medicare and Medicaid Services (CMS) is on the cusp of adopting that number as a requirement for Medicare recipients. Physicians around the country have already started using it and so has the Veterans Administration.

In addition, Maine has passed a state law with a maximum 100 MME allowed for opioid prescribing starting on July 1, 2017. New Jersey, Virginia and other states are also passing laws restricting opioid prescribing by dose or duration, often citing the CDC guidelines as justification. 

But this number is all but arbitrary. The CDC guidelines recognize that the 90 MME ceiling was based on limited evidence. Obviously, patients are not safe at either 80 MME or doomed at 100 MME.

Nor can this number be used to calculate the safe number of days or doses for an opioid prescription. It is a magical number. And magical numbers can lead to magical thinking.

In fact, the 90 MME from the CDC cannot even be reliably calculated. The CDC offers an app that allows physicians to calculate the 90 MME. Its basic methodology is described here. Web sites like Practical Pain Management also offer an opioid calculator, and third-party developers have created opioid conversion apps.

But it turns out that the results of these calculators are inconsistent. Dr. Jeffery Fudin and his students have shown that the various methods of calculating MME produce significantly different outcomes.

Thus, how much of a morphine equivalent dose an individual is actually allowed to receive depends on which method is used. This uncertainty makes the 90 MME level clinically less than meaningful and potentially dangerous.

Existing research does show an increased risk of addiction and overdose as the daily dose of an opioid medication rises. But this is exactly what we should see. Most substances are more dangerous in larger quantities, after all. But each patient is different: gender, age, health status, prior opioid exposure, and other factors all play a significant role in determining a safe and effective dose of an opioid medication.

A cutoff like 90 MME is at best arbitrary. At worst it leaves some patients undertreated, and may harm patients who are forced to taper to the 90 MME threshold from a higher dose that has been safe and effective for them.

In addition, it is not entirely clear how the magic number of 90 MME was determined. The CDC developed its guidelines in a largely closed-door process that involved outside consultants whose identity was not revealed at the time. Most magical numbers are like this: their justification is thin and often obscured.

Meanwhile, the CMS and states like New Jersey and Maine are ignoring more important numbers. A recent STAT News article reported that opioid prescriptions have been falling since 2012 and that the misuse of pain relievers bottomed out in 2014. In other words, opioid prescribing is no longer a driving factor in the opioid crisis -- street drugs are.

The magical number of 90 MME is simply not justified. The relative risk of prescription opioids, in particular for people with chronic or intractable pain, is quite low. This fact was ignored in the CDC guidelines and in state government regulation. But it should be obvious: Most Americans have taken opioids at some point in their lives, whether after trauma or surgery or as a part of dental care. And it is abundantly clear that the majority have not become addicted to opioids. Again, the magic number is not real.

On February 9, 1950, Senator Joe McCarthy gave a speech in Wheeling, West Virginia, claiming that the U.S. State Department was infested with Communists, specifically 205 of them. This number helped launch a wave of political repression, fear-mongering, and social paranoia that we now refer to as McCarthyism. Nothing good came of that era, except maybe a cautionary note about how magical numbers can contribute to tragic results.

We are facing a similar risk with opioids, a magical number motivated by magical thinking by regulators and policymakers -- none of which is likely to help address the opioid crisis or the tragedy of addiction.

Instead, millions of people who may benefit from short-term opioid therapy after trauma or surgery will be denied effective medication for pain management, and tens of thousands of people with chronic conditions for whom opioid therapy is a critical component in maintaining a reasonable quality of life will be harmed. These are real numbers that we really need to pain attention to.

Roger Chriss suffers from Ehlers Danlos syndrome. Roger is from Washington state, where he works as a technical consultant who specializes in mathematics and research.

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.

Pain Patients Prefer Marijuana over Opioids

By Pat Anson, Editor

A small study by Canadian researchers has found that nearly two-thirds of patients who use marijuana medically prefer cannabis over prescription drugs to treat their chronic pain, anxiety and depression.

An online survey by researchers at the University of British Columbia and University of Victoria asked 271 patients about their marijuana use. About half reported having chronic pain, while the remainder suffered from mental health issues, gastrointestinal problems, insomnia or multiple sclerosis.  

Overall, 95 percent of patients said cannabis was very effective at treating their symptoms and 63 percent reported using cannabis as a substitute for opioids, benzodiazepines, anti-depressants and other prescription drugs.

The study, published in International Journal of Drug Policy, was funded by Tilray, a medical marijuana production and research company.

“The finding that patients using cannabis to treat pain-related conditions have a higher rate of substitution for opioids, and that patients self-reporting mental health issues have a higher rate of substitution for benzodiazepines and antidepressants has significant public health implications,” wrote co-author Zach Walsh, PhD, an assistant professor of psychology at the University of British Columbia.

“In light of the growing rate of morbidity and mortality associated with these prescription medications, cannabis could play a significant role in reducing the health burden of problematic prescription drug use.”

Vaporizers were the most common method for using cannabis, followed by smoking, edibles, water pipes, and topical lotions. Most patients reported using 2 grams or less of marijuana. Many said cannabis was safer and had fewer adverse side effects than their medications.

A recent study in Canada found that a significant increase in the use of marijuana coincided with a decline in the use of opioid pain medication and benzodiazepines such as Xanax and Valium.

“The finding that medical cannabis is used primarily to treat chronic pain is consistent with past research. However, the extensive self-reported use to treat mental health conditions and associated symptoms represents a novel and interesting trend, and suggests that the conceptualization of cannabis as deleterious to mental health may not generalize across conditions or populations,” Walsh said.

Medical marijuana has been legal in Canada since 2001, but only to treat certain conditions. Cannabis is currently prescribed to over 65,000 patients.

A small study conducted at the University of Michigan last year also found a significant decline in the use of opioids by pain patients using medical marijuana.  Nearly two-thirds (64%) reported a reduction in their use of pain medications and almost half (45%) said cannabis improved their quality of life.

Previous research also found that opioid overdoses declined by nearly 25 percent in states where medical marijuana was legalized.

Last week, a spokesman for the Trump administration suggested there could be a crackdown in the U.S. on the use of marijuana recreationally.

"There's two distinct issues here, medical marijuana and recreational marijuana," said press secretary Sean Spicer. "I think that when you see something like the opioid addiction crisis blossoming in so many states around this country, the last thing that we should be doing is encouraging people."

Although 28 states have legalized medical marijuana and a handful of states also allow its recreational use, marijuana is still illegal under federal law.  Spicer suggested there could be “greater enforcement” of federal law under Attorney General Jeff Sessions, a longtime opponent of marijuana use.

Signing a Pain Contract in the Age of Opioid Phobia

By Crystal Lindell, Columnist

I know, I know. Opioids seem to be all that pain patients talk about these days. Blah, blah, blah. We get it, you need drugs. Let’s move on already.

But I don’t have that luxury. Opioids are, for better and for (mostly) worse, a huge part of my life. And I recently decided that I was:

A. Going to need to continue taking at least a small dose of hydrocodone long-term

B. That I really needed a slighter larger, “small dose” to be able to function.

I have what’s called intercostal neuralgia on my right side and the best way I can think to describe it is that I always feel like I have three broken ribs. The pain is no joke. And although it seems to be more manageable these days, it lingers and it hurts like hell, and opioids are the only thing I have found that even kind of helps.

Without hydrocodone I am in too much pain to shower regularly, check email, do my makeup or even sit a restaurant and eat.  With hydrocodone I can pretty much do all those things, like a typical health person who’s just a bit high. 

And yes, I know they are addictive, I know how hard they are to get off of, and I know that withdrawal is hell. I’ve been through it. I took myself down to 5 mg a day from 60 mg day when my pain became more manageable. It wasn’t easy. It took about a year for my brain to deal with that, and the withdrawal issues sucked.

So, when I say I need to be on hydrocodone, I say it with all the wisdom and caution that comes from the personal experience of dealing with opioids — and their side effects. 

And honestly, I’m among the lucky ones. When I called my doctor to ask if I could up to 10 mg a day, he agreed and knew I wouldn’t be asking if I hadn’t given lots of thought to the pros and cons of that choice. 

But that doesn’t mean dealing with opioids doesn’t also suck. 

First, I had to drive two hours each way to see him, because that’s how far away the closest university hospital is to my house and my case is too complex for the local small town doctors. And, as a reminder, I live my daily life feeling like I have three broken ribs. Driving two hours each way sucks. 

Then, when I got there, I had to take a drug test. Some politician somewhere decided people on opioids shouldn’t be using pot. Okay. But peeing in a cup sucks when you’re a woman. It gets all over your hands. You miss the cup and don’t collect enough. It’s just messy. 

But fine. Whatever. 

I peed in a cup. Good news. I’m clean. Well, I mean, aside from the hydrocodone, I’m clean. 

Signing a Pain Contract

Then, I had to sign what is formally called the “Controlled Substances Medication Agreement” — basically an opioid pain contract. At first blush it doesn’t seem like a big deal. As long as I’m a good person, there shouldn’t be any issues, right?

But the thing is literally 21 bullet points long. And it feels like I signed away all of my rights. 

The contract includes things like bullet point number 8, which requires that I get my prescription filled at the same pharmacy every month.

This is annoying because I use my local small town pharmacy, which is closed on Sundays, holidays and every night at 7 p.m. And if I’m due for a refill on a Sunday or out of town for work when my prescription expires, I can’t get it filled early, as bullet point number 14 clearly explains. 

Bullet point 14 also says I have to keep all my drugs in a locked cabinet or safe, and if they’re ever stolen I can’t get an early refill. Guys, that’s just not practical. I take these meds as needed, and sometimes that means I’m at the grocery store or visiting a friend or eating at Taco Bell, and then suddenly they are needed. And at those times, they are in my purse, which doesn’t have a lock on it. 

Bullet point number 11 says I can’t go to the emergency room for opioids, which sucks because sometimes my pain spikes and the only thing that gets it under control is a shot of dilaudid, which I usually get at the ER. I guess now when my pain spikes, I’m supposed to drive two hours to my doctor and hope he’s available to deal with it. 

Oh, and if I’m ever too sick to make that drive, nobody is allowed to pick up my hydrocodone prescription unless I have pre-authorized them, as per bullet point number 13. Of course, it has to be a written prescription — doctors cannot legally call in or fax hydrocodone  prescriptions anymore. 

I also agreed to get random drug tests, allow pill counts. and basically just give up all of my dignity. 

Fine. Okay. I need these medications. So I signed on the dotted line. And I guess I just have to hope I never get robbed, have a flare up or need a refill on a Sunday. 

The thing about opioids is that everyone assumes that if they ever need these drugs they will be able to get them. That anyone who’s truly deserving doesn’t have anything to worry about. But I have to tell you something: I’m a good person. I’m in real pain. I need these drugs. And I’m barely able to get them.

I understand how powerful these drugs are. Going off morphine was literally hell for me. But you know what else is hell? Living every day of your life feeling like you have three broken ribs. 

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.

Active Seniors Have Lower Risk of Chronic Pain

By Pat Anson, Editor

Older adults who are physically active are better able to block pain signals and may have a lower risk of developing chronic pain, according to a small study published in the journal Pain.

Researchers at Indiana University-Purdue University Indianapolis performed a series of experiments on 51 healthy adults, aged 60 to 77, who wore monitoring devices for one week to measure their physical activity. Participants were given heat and pressure tests to measure their “pain modulation” – how the central nervous system interprets and perceives pain.

Both tests found that pain modulation was significantly related to physical activity. Older adults with more frequent moderate-to-vigorous physical activity had lower pain scores, while those who were sedentary were less able to block pain signals. Even light physical activity appeared to lower pain perception.

"This study provides the first objective evidence suggesting that physical activity behavior is related to the functioning of the endogenous pain modulatory systems in older adults," wrote lead author Kelly Naugle, PhD, of the Center for Physical Activity in Wellness and Prevention, Indiana University–Purdue University Indianapolis.

"Our data suggest that low levels of sedentary behavior and greater light physical activity may be critical in maintaining effective endogenous pain inhibitory function in older adults."

Previous studies have shown that pain modulation is poor in patients with chronic pain conditions such as arthritis, back pain and fibromyalgia.

Aging is associated with chronic low-grade inflammation and oxidative stress, which could make the peripheral and central nervous systems more sensitive to pain. Older adults are also more likely to be sedentary and less physically active, which would make them more vulnerable to chronic pain.

Recent studies have documented the benefits of exercise for older adults. Chair yoga reduced pain and improved the quality of life in older adults with osteoarthritis. Another study found that just 45 minutes of moderate exercise a week improved function and reduced pain levels.  

Stay Engaged Socially If You Are Chronically Ill

By Barby Ingle, Columnist  

It is so important to stay active with your social life when you are living with chronic pain or a disabling chronic condition. It is so easy to isolate ourselves, which can lead to an increase in anxiety, depression and frustration.

Work at not isolating yourself from friends and family. Here are a few ideas that my husband/caregiver and I use:

For Patients:

• If prayer is helpful, keep doing it
• Keep exercising (or start)
• Look for support wherever you can find it
• Maintain a healthy lifestyle
• Socialize as much as possible
• Take in good nutrition
• Remember your caregivers are going through similar challenges

For Caregivers:

• If a patient is grouchy or depressed, don’t see it as an attack on you but as a reflection of their pain
• Learn as much as you can about the patient’s condition and the available medical options
• Remember the patient is not doing this on purpose and is going through many challenges
• Try not to take a patient’s anti-social behavior personally
• Try to avoid being either too babying or too harsh toward a patient
• A patient may feel less guilty if the burden does not always fall only on you. Try to find others to help with their care.

For Both of You:

• Discuss options with a loved one when they are ready to talk about them.
• Join or form a support group. This may be other family members or friends. This will allow you to take a break.

I believe that human connection is so important. When we connect with others and when we have support, we cope better, our pain levels don’t flair as often, and many other health benefits kick in.

We are meant to interact and be a part of society.

I have worked with many chronic pain patients over the years who isolated themselves. Either they or their caregiver came to me asking, “How do I get past this depression?” or “How do I get past all I have lost?”

One woman, who became a good friend over the last 10 years, was injured in her early years of life. She didn’t realize she was isolating herself and that she had stopped maturing psychologically or connecting with others.

Slowly and over time, she changed her patterns of social interaction, concentrated on her feelings, and practiced better daily living (posture, nutrition, stopped smoking). I encouraged her and her caregivers to be more social and pay more attention their feelings. She is now a social butterfly, both online and offline! 

I am also aware that social media or negative online support groups can be very draining when you don’t put up limitations and pay attention to your energy levels.

Find a good balance in life whether you are the patient or their caregiver. Remember you too can have a more meaningful social life that can make a difference for you and everyone around you. 

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) 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. 

Heroin Tops Painkillers as Leading Cause of Overdoses

By Pat Anson, Editor

One in four drug overdoses in the United States can now be blamed on heroin, according to a new report by the Centers for Disease Control and Prevention that shows deaths linked to prescription painkillers falling.

The report found that fatal drug overdoses have more than doubled in the U.S. since 1999, with overdose death rates growing the fastest among whites and middle aged Americans.

In 2015, the overdose death rate was 16.3 per 100,000 people, up from 6.1 deaths per 100,000 in 1999. Ten percent of the deaths in 2015 were classified as suicides, 84% were accidental and the remainder undetermined.

The report by the CDC’s National Center for Health Statistics further documents the changing nature of the nation’s drug problem. Overdose deaths involving natural and semisynthetic opioid painkillers – such as hydrocodone and oxycodone – remain high, but have fallen from 29% of all overdoses in 2010 to 24% in 2015.

At the same time, deaths involving heroin have tripled, from 8% of overdoses in 2010 to 25% in 2015 – making heroin the leading cause of drug overdoses.

Deaths involving synthetic opioids, a category that includes both fentanyl and tramadol, rose from 8% of overdoses in 2010 to 18% in 2015. The U.S. has seen a surge in illicit fentanyl being sold on the black market, where it is often mixed with heroin or used to make counterfeit painkillers. More recent data from some states, like Massachusetts and Ohio, show that deaths involving fentanyl now exceed those linked to heroin and painkillers.

PERCENTAGE OF OVERDOSE DEATHS BY DRUG CATEGORY (SOURCE: CDC)

Perhaps the only bright spot in the report is that overdose deaths involving methadone have declined from 12% of deaths in 2010 to 6% in 2015.

The CDC analysis is based on death certificate codes, a database that is not always considered reliable because of wide variability in reporting from state to state.

“At autopsy, the substances tested for and the circumstances under which the toxicology tests are performed vary by jurisdiction,” wrote lead author Holly Hedegaard, MD, a medical epidemiologist with the National Center for Health Statistics.

“Additionally, drug overdose deaths may involve multiple drugs; therefore, a single death might be included in more than one category when describing the percentage of drug overdose deaths involving specific drugs. For example, a death that involved both heroin and fentanyl would be included in both the percentage of drug overdose deaths involving heroin and the percentage of drug overdose deaths involving synthetic opioids excluding methadone.”

Other highlights from the report:

• West Virginia, New Hampshire, Kentucky and Ohio had the highest overdose rates in 2015
• Nebraska, South Dakota, North Dakota and Texas had the lowest overdose rates
• The age-adjusted overdose death rate among whites in 2015 was 240% higher than in 1999
• The overdose rate for whites was nearly double that of blacks and three times higher than Hispanics
• Overdose deaths grew among all age groups, but surged over 500% for adults aged 55 to 64

The report helps document a disturbing increase in deaths among middle-aged white Americans, first reported by Princeton University researchers in 2015.

Anne Case and Angus Deaton estimated that a "lost generation" of nearly half a million Americans died from a quiet epidemic of chronic pain, suicide, alcohol abuse and drug overdoses from 1999 to 2013.  

“This change reversed decades of progress in mortality and was unique to the United States; no other rich country saw a similar turnaround,” Case and Deaton reported in the Proceedings of the National Academy of Sciences. “This increase for whites was largely accounted for by increasing death rates from drug and alcohol poisonings, suicide, and chronic liver diseases and cirrhosis.”

The rising death rate for middle-aged whites was accompanied by declines in physical health, mental health and employment, as well as increases in chronic joint pain, neck pain, sciatica and disability.

Study: Suboxone Usually Fails To Stop Opioid Use

By Pat Anson, Editor

A drug widely prescribed to treat opioid addiction fails so often that two-thirds of the pain patients who took it during addiction treatment wound up getting opioid prescriptions again, according to a large new study by the Johns Hopkins Bloomberg School of Public Health.

Researchers analyzed pharmacy claims for over 38,000 people who were prescribed Suboxone (buprenorphine) between 2006 and 2013, and found that 67 percent of them filled a prescription for an opioid painkiller in the year after Suboxone treatment.

Nearly half of the patients – 43 percent -- filled an opioid prescription during treatment. Most patients continued to receive similar amounts of opioids before and after Suboxone treatment.

Suboxone is a combination of two different medications: buprenorphine, a short-acting opioid similar to methadone, and naloxone, an anti-overdose drug.

During most of the years analyzed in the study, Suboxone was the only combination of buprenorphine and naloxone that was available. It is now sold under several different brand names.

The Johns Hopkins study, which was funded by Centers for Disease Control and Prevention, found that about two-thirds of the patients who received Suboxone stopped filling prescriptions for it after just three months.

The findings, published in the journal Addiction, raise questions about the effectiveness of Suboxone and addiction treatment in general, at a time when the federal government is spending hundreds of millions of dollars to subsidize the addiction treatment industry.

"The statistics are startling," said lead author G. Caleb Alexander, MD, "but are consistent with studies of patients treated with methadone showing that many patients resume opioid use after treatment."

Researchers say the continued use of pain medication during and after addiction treatment suggests that many patients did not have well-coordinated treatment for their addiction or their chronic pain.

“There are high rates of chronic pain among patients receiving opioid agonist therapy, and thus concomitant use of buprenorphine and other opioids may be justified clinically. This is especially true as the absence of pain management among patients with opioid use disorders may result in problematic behaviors such as illicit drug use and misuse of other prescription medications,” Alexander wrote.

Prescriptions for Suboxone and other brands of buprenorphine have soared in recent years as the U.S. grapples with an “opioid epidemic” that was initially fueled by painkillers, but is now increasingly caused by heroin and illicit fentanyl. Sales of buprenorphine now exceed $2 billion annually and are likely to keep growing.

Last year the federal government nearly tripled the number patients that can be treated with buprenorphine by an eligible physician. Raising the limit from 100 to 275 patients was intended to give addicts greater access to treatment, especially in rural areas where few doctors are certified to prescribe buprenoprhine.

An additional $1 billion in funding for addiction treatment was approved by Congress last year under the 21st Century Cures Act. Much of that money will be used to pay for buprenorphine prescriptions.

Addicts long ago discovered that buprenorphine can be used to get high or to ease their withdrawal pains from heroin and other opioids. Buprenorphine is such a popular street drug that the National Forensic Laboratory Information System ranked it as the third most diverted opioid medication in the U.S. in 2014. 

Common Medical Conditions Linked to Fibromyalgia

By Lana Barhum, Columnist

People with fibromyalgia are more likely than others in the general population to have other chronic conditions. But doctors have yet to figure out why fibromyalgia often coexists with other diseases – what’s known as “comorbidity.”

Fibromyalgia sufferers often have migraines, autoimmune diseases, irritable bowel syndrome, depression, anxiety and sleep disturbances. Having multiple overlapping conditions isn’t easy, and increases physical pain and suffering. 

It is important for all of us with fibromyalgia to learn about these conditions and their symptoms.  Being knowledgeable about them will help us and our medical providers better control our symptoms, pain and overall health. 

Here are several common medical conditions faced by people who also have fibromyalgia:

Migraines:  Research indicates migraine sufferers are more likely to have fibromyalgia. One study from 2011, published in The Journal of Headache and Pain, suggests migraine headaches may even trigger fibromyalgia. Researchers believe preventing migraine headaches could potentially stop or slow down the development of fibromyalgia in some people, or minimize symptoms in fibromyalgia sufferers.

"These results suggest different levels of central sensitization in patients with migraine, fibromyalgia or both conditions and a role for migraine as a triggering factor for FMS. Prevention of headache chronification in migraine patients would thus appear crucial also for preventing the development of fibromyalgia in predisposed individuals or its worsening in co-morbid patients,” Italian researchers reported.

Autoimmune Diseases:  In about 25% of cases, fibromyalgia co-exists with an autoimmune condition, according to the Centers for Disease Control and Prevention.  Two serious autoimmune diseases that may accompany fibromyalgia are rheumatoid arthritis (RA) and lupus. 

Other studies show at least 20% of RA patients also have fibromyalgia, but researchers have yet to understand the connection. The pain of RA can trigger fibromyalgia flares, worsen pain and symptoms, and vice versa. 

In 2016, researchers in the UK tried to determine whether RA patients who also had fibromyalgia had lower levels of joint inflammation.  The results of their study, published in BMC Musculoskeletal Disorders, determined RA patients with fibromyalgia had "widespread soft tissue tenderness but fewer clinically inflamed joints, have higher disease activity scores but may have lower levels of synovial [joint] inflammation."

The researchers suggested that different approaches to treatment may benefit these patients.

"These patients are less likely to respond to escalation of inflammation-suppressing therapy and may be more suitable for other forms of treatment including alternative means of pain control and psychological support,” they wrote.

It is also not uncommon for lupus and fibromyalgia to co-occur.  However, fibromyalgia is no more common in lupus than other autoimmune diseases, according to researchers out of the National Data Bank for Rheumatic Diseases. 

Depression and Anxiety: People with fibromyalgia frequently experience depression and anxiety.

According to a 2011 report published in the journal Pain Research and Treatment, 90% of fibromyalgia patients have depressive symptoms at least once, and 86% of those people may suffer from a major depressive disorder. Depression and fibromyalgia occur at the same time in at least 40% cases -- a connection that researchers are still trying to understand.

The prevalence of anxiety symptoms in fibromyalgia patients ranges from 13% to about 71%,  according to Portuguese researchers. 

Irritable Bowel Syndrome: A majority of fibromyalgia patients – up to 70% - also suffer from irritable bowel syndrome (IBS), a digestive disorder characterized by abdominal pain, cramping, bloating, diarrhea and constipation.

Sleep Disturbances:  Most people with fibromyalgia report problems sleeping.  No matter how long they sleep, theyrarely feel rested. Restless leg syndrome, non-restorative sleep, and sleep apnea are all sleep issues associated with fibromyalgia.

People with fibromyalgia are more likely to have restless leg syndrome (RLS) than others in the general population, according to a study from the American Academy of Sleep Medicine (AASM). RLS is a disorder that causes uncomfortable feelings in the legs and/or the urge to keep moving the legs. The AASM study, published in the Journal of Clinical Sleep Medicine, finds 33% of people with fibromyalgia also have RLS.  

Up to 90% of fibromyalgia patients experience non-restorative sleep, a feeling of not getting refreshing sleep, despite appearing to have slept.

A 2013 study published in Clinical and Experimental Rheumatology reports that 61% of men with fibromyalgia suffer from sleep apnea, as well as 32% of women. Sleep apnea is a serious sleep disorder where breathing is interrupted during sleep.  

Living with Fibromyalgia and Co-Existing Conditions                 

In addition to suffering from fibromyalgia, I also suffer from three co-existing conditions -- rheumatoid arthritis, depression, and anxiety.  Having both RA and fibromyalgia, I have struggled with more severe symptoms, including muscle and joint pain and cognitive issues.  I know dealing with this debilitating pain results in both depression and anxiety, and both have been frequent visitors to my life.   

I am aware of the effect multiple conditions have on my well-being, and work hard at improving my overall health. I know I can still have a good quality of life, despite the many obstacles that fibromyalgia and its multiple co-occurring conditions present. 

There are other conditions linked to fibromyalgia that I have not mentioned, but they are still significant. Understanding how fibromyalgia and these conditions coexist may someday help researchers develop better treatments for fibromyalgia. 

Lana Barhum is a freelance 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.