Fighting to Survive Suicidal Thoughts

By Crystal Lindell, Columnist

(Author's note: A year ago today, on May 17, 2016, I almost killed myself. It was such a traumatic experience that I have marked the 17th of each month since then, and last night, I counted down the minutes until midnight as though I was counting down until my birthday. I had finally made it a year.

I wrote the following while I was in the darkest part of it — just days after everything happened. I never shared it publically, because I was worried about how it would be received, and I did not feel comfortable telling people about something I felt like I was still working so hard to overcome.

But take heart. I am still alive. And I have gotten lots of medical help since then, and lots of love from my family and friends. There are good days and bad days and very bad days, but they are my days because I am still here.

I hope my words will help you know that it is possible to fight the good fight against depression and anxiety, and that doing so does not mean you are weak — it means you a strong. For anyone currently battling mental health issues, you have all my love. Don’t kill yourself. We need you.)

How do you get over a broken heart?

More importantly, how do you get over a broken heart when you’re having a bad reaction to your new anti-anxiety medication, BuSpar (buspirone), and it’s causing the cruelest of all side effects — increased anxiety and suicidal ideation?

How are you supposed to endure that when you’re barely standing upright in the bathroom stall at work, as your swollen eyes cry for an hour straight, and then another hour after that?

When your suddenly weak wrists are bracing your hands against the blue walls in the stall, because if they weren’t, then your legs wouldn’t be able to hold you up?

I’m actually asking. I really want to know. How do you get over that?

If you’re wondering what medication-induced suicidal ideation feels like, I will tell you. It feels like you’re planning how to kill yourself, and your brain is spinning, and you hear this voice in your head screaming, JUST DO IT. LITERALLY NOBODY WILL EVEN CARE.

It feels like the blue dress you’re wearing is suffocating you, and you just want to take all the medication in your purse, and lock the stall and die.

It feels like the pain of being alive is actually worse than death. It feels like the pain will never cease. And it feels like the only real choice you have is to kill yourself.

It feels like the hours are seconds, and at the same time, every second is an eternity.

But still, deep inside, in your soul, you hear a whisper. A piece of your heart you forgot existed, trying as hard as it can to remind you of the light. You hear the faint, barely audible voice of a little piece of yourself trying to fight it. Trying, with all its strength to remind you that maybe, just maybe there’s a couple reasons you shouldn’t kill yourself.

It’s the voice that you spent your whole life nurturing in case of emergency. Specifically, this emergency. The voice you spent years building up so that when the world is exploding it can remind you where the fire extinguisher is. And you never really think you’ll need that voice. You never really think that your life will depend on that voice.

But suddenly, there you are, suffocating in a blue dress and expensive mascara is dripping down your face, and you’re doing the math on how many meds you have in your purse, and whether or not it will be enough to kill you. And out of the blue, you need that little voice to survive.

Maybe it’s God. Maybe it’s the years of love from everyone I’ve ever known. Maybe it’s the universe. Maybe it’s all three. 

It took me three days of waging war on screaming suicidal thoughts before I realized that all of this was likely a severe reaction to BuSpar, my anti-anxiety medication. I should have called my psychologist right away. And I should have gone to the ER.

But the suicidal thoughts were too loud, too overwhelming, and all the little voice in my soul could manage was continually convincing me to give it a couple minutes before I did anything too drastic. And then the minutes turned to hours, and the hours to days, and here I am, still alive.

I’m off the medication. My heart is still broken. And I’m not sure I can bear the weight of that blue dress ever again.

But I’m alive. Today, I am alive.

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 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.

Don’t Drown in Anxiety Over Healthcare Bill

By Barby Ingle, Columnist  

With everything going on with the American Health Care Act (AHCA), there is a lot of anxiety and stress over possible changes to our health coverage.

There were people who took to social media to start their protests before all of the facts were in. I have yet to read the actual bill and when I reached out to others who were commenting on it -- as if they read it and knew what was in it – well, they have not read it yet either.

So I kept looking and found an interview with House Speaker Paul Ryan, which talked about the biggest concern most of us have – pre-existing conditions. Before the Affordable Care Act (Obamacare) became law, people with pre-existing conditions paid several times more than others — if they could afford or be approved for a policy in the first place.

The latest version of the ACHA passed by the House would allow states to seek waivers from existing federal law and create “high risk pools” that would allow insurers to charge more for pre-existing conditions if someone lets their insurance lapse.

To help combat the increased premiums and out-of-pocket costs, GOP Reps. Fred Upton (MI) and Billy Long (MO) crafted a provision to provide $8 billion to states to help fund high risk pools or subsidy programs for people with pre-existing conditions. It would be left to each individual state to decide how to spend the money.

If you have a pre-existing condition, what can you do? First, contact your state legislators and make sure that your health conditions are covered under any pool or subsidy program. It is up to us to raise our voices, share our stories, and demand that our lawmakers remember us and our conditions as they move forward.

Luckily for us, there are many steps to go in this process and we don’t know what the outcome will be. The U.S. Senate still has to vote on the ACHA and is likely to make changes.  It is also important to note that the House version of the ACHA does not spell out what sort of pre-existing conditions insurers may cover if states seek a waiver. In the past, some insurers identified domestic violence, sexual assault, caesarean birth and postpartum depression as grounds for denying coverage or charging higher premiums.

Letting ourselves drown in hearsay, low expectations of the current administration, and sharing information that is not accurate to make a point is not going to fix or change anything. It will only cause us anxiety, stress and energy pennies that as chronically ill patients we don’t have the ability to recover from.

Is it time to act? YES. Is it time to over-react? NO. The water is rising, but it’s only up to our knees and we’re still standing. Before the tide comes in further, make sure you are doing what you can to be heard and in ways that will matter for our pain communities. VOTE, make phone calls, be willing to testify in person if needed, answer calls from the media to discuss how the ACHA will affect you if the conditions you are living with are not covered.

Don’t exaggerate or give false information about a list of pre-existing conditions that won’t be covered. Remember, each state will decide what pre-existing conditions will be included if they get the waiver granted. Instead, bring to light that our healthcare costs are already higher than healthy patients, because we have more doctor visits and treatments, and are paying more in out of pocket costs.

Our options are already limited and we need to have a seat at the table of decision makers. We can get that by being factual and accurate, and by voting for people who will remember our stories.  

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

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

A Pained Life: Lost in Translation

By Carol Levy, Columnist

Whenever I go to a doctor with a pain related complaint, I am asked the question we all know: “On a scale of 1 to 10, how bad is it?”

I always preface my answer: “Only trigeminal neuralgia is a 10.”

Nevertheless, they persist: “Give me a number. Well, okay, if I have to, I guess a 6.”

What does that mean? To me, it means the pain is pretty bad. Compared to trigeminal neuralgia, nothing can ever reach a 10 (I pray). As such, a 6 is pretty bad.

But to them, a 6 is not all that bad. I get the equivalent of a pat on the head and “take some aspirin or Advil.” Luckily, I am pretty healthy and usually that works. The few times it hasn't, it took a number of appointments, in one case a number of years, before I got a diagnosis and referral to someone who could help me.

On a scale of 1 to 10, who decides what’s qualifies as a 1 or what is a 10?

Each doctor, nurse and practitioner has their own definition in mind. I have yet to hear one say, “Well, I consider stubbing your toe a 2, appendicitis a 6, breaking your leg a 9. Based on that rating, what is your pain level?”

Then at least we'd have some basis for comparison and would be speaking the same language.

Years ago I walked into a neurologist's exam room. The air conditioning was on. It was triggering my trigeminal neuralgia. “Could you turn that down? It is really setting off my pain,” I asked.

The doctor looked at me and practically snarled, “If it was really making your pain bad you would have turned it off yourself.”

No, I wouldn't. I was not raised that way. As a female, as a patient, and as a person who tries to be courteous. It was his office and his air conditioner. It was not my place to just walk over and change the settings.

What we have here is a failure to communicate. He did not ask me, “If it is causing so much pain, why didn't you just turn it off yourself?”

I did not reply to what felt like an attack on me and my truthfulness. And he wrote in his records, “I do not think her pain is as bad as she says.”

We often talk and write about issues of communication.

“Friends, coworkers, and family don't understand my pain.”

“The doctor won't give me the medication I need.”

“He ignores my complaints.”

Maybe the issue is not being ignored or misunderstood. Maybe it is simpler than that.

When I was in high school, we had a Brazilian foreign exchange student live with us. She spoke no English. I spoke no Portuguese. The two of us walked around with a Portuguese-English dictionary. I looked up the English words and spoke the Portuguese equivalent. She looked up the Portuguese words so she could speak to me in English. It was tedious, but it worked.

Before we can go forward with getting help and understanding, maybe we need to do the same. Find a dictionary so we are all on the same page.

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.

What You Need to Know About Chronic Pain

By Sarah Elizabeth Hirschle, Guest Columnist

This is a side of my life not many know about, except close friends and family.

This is me when traveling anywhere over an hour away. I can only sit in the car for up to an hour. I was traveling to my doctor's appointment several hours away. 

I share for awareness, not pity.

In the past three weeks, I have been able to leave the house twice a week at most. Some of those days were just short car rides to get some fresh air and sun. 

This is the sad reality of so many chronic pain patients. Much more awareness is needed, especially in the medical community. 

If you have a loved one that is suffering from pain, please listen. Talk to them, let them know you care. Even if you don't know what to do to help or hate seeing them that way. 

A few things to know about chronic illness and pain:

SARAH ELIZABETH HIRSCHLE

• The pain causes depression and depression causes pain.

• Pain is very isolating, making patients feel unlovable and alone, when in fact we need love and companionship the most at these times.

• True chronic pain patients who are on narcotics for pain do not get high from their meds.

When your body is under stress and in insurmountable amounts of pain, all you get from opioid medication is relief. There is a big difference between dependence and addiction.

We do what whatever is necessary to have some quality of life.

Please reach out if you know someone is suffering. You may save their life without knowing it.

Sarah Elizabeth Hirschle lives in Pennsylvania. Sarah contracted Lyme disease as an infant, which caused permanent organ damage. At age 20, her spinal cord was damaged during a botched epidural and she developed arachnoiditis.  Sarah also lives with Chronic Regional Pain Syndrome in her legs and feet.

Sarah helps run a Facebook support group called Arachnoiditis Everyday and moderates the Facebook page of the Arachnoiditis Society.

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 Poem: A Misery Too Great to Bear

"A Misery Too Great to Bear"

By Angelika Byczkowski

People in pain are dying,
a reluctant calculation,  
the only option left to escape
a misery too great to bear.

While we struggle with our pain,  
our government has decided   
to snatch relief from opioids  
away from us for our own good.  

They say one pill begins the end,  
addiction guaranteed.
We say we need a powerful shield
only opioids can provide.  

By policy now unarmed, defenseless,
we are stalked by pain through every moment.  
It hunts us down relentlessly,  
sinks fangs in deep and feasts.

It rips the flesh and breaks the bones,   
cracks the skull and snaps the spine,  
with license to do just as it pleases,  
impunity guaranteed by decree.  

We are sent out naked now  
to battle this rampaging pain  
with methods long disproven, yet  
"believe and it will be" they say.

Denied our armor, medication  
callously denied by guidelines,   
we teeter at the ragged gash  
where soul was ripped from body.  

How much pain and for how long  
can we be asked to bear,  
while experts coin their catchy phrases,  
call our pain "catastrophizing".

A catastrophe indeed is pain:
It traps us in the wreckage,  
wandering the sad remains    
of tortured flesh that cannot heal.

What we know is pain, we feel  
only pain, exploding pain,  
pain so bad it breaks our will
to live like this forever.  

Pain dominates, annihilates,
ruthless in its roaring rage, while  
helpless at the feet of the beast,
we lie sacrificed for overdoses not ours.

People in pain are dying,
a reluctant calculation,  
the only option left to escape
a misery too great to bear.

Angelika Byczkowski suffers from Ehlers-Danlos Syndrome and fibromyalgia. Until she was disabled by progressive pain and fatigue, Angelika was a high tech IT maven at Apple and Yahoo. She lives in California’s Santa Cruz Mountains with her husband and various four-legged kids.

When pain isn't keeping her flat on her back, she spends her limited energy researching and blogging about chronic pain, EDS, and fibromyalgia at EDS Info.

Pain News Network invites other readers to share their stories (and poems). 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.

Better Analysis Needed on Non-Medical Use of Opioids

By Willem Scholten, PharmD MPA, Guest Columnist

A few months ago, the medical journal World Psychiatry published an article that focused on the global non-medical use of prescription drugs, particularly psychoactive substances such as opioids.

Unfortunately, the two authors -- Dr. Silvia Martins and Dr. Lilian Ghandour -- ignored the distinction between prescription and prescribed opioids, adding unnecessary confusion to the already complex debate about access to pain treatment. Further, Dr. Martins said in the Washington Post that the non-medical use of psychoactive substances could turn into a pandemic if we are not careful.

Both authors are affiliated with Columbia University’s Mailman Institute of Public Health, which claims to work in the interest of underserved people in developing countries. Access to effective pain treatment in developing countries is already now more difficult than in the U.S.

Elsewhere, I have demonstrated that access to prescribed opioids for adequate pain treatment is a problem for 5.5 billion people living in countries where opioid analgesics are not available or inaccessible for patients in need.

In most countries, the per capita consumption of legitimately prescribed opioid analgesics (as officially reported to the International Narcotics Control Board) remains much lower than in the U.S. and Canada, in extreme cases even up to 50,000 times lower.

Distinction Between “Prescribed” and “Prescription” is Key

There is a vast difference between prescription and prescribed opioids. Prescription opioids are intended to be prescribed as medicines. Prescribed medicines are actually prescribed by a physician and dispensed by a pharmacy.

About 75% of fatal overdoses from prescription opioids in the U.S. occur in people who have not been prescribed opioids during the three months preceding their deaths. Thus, the majority must have obtained these prescription opioids on the black or gray market.

Without referencing the data, Drs. Martins and Ghandour claim that prescription opioids are causing serious problems in other parts of the world. However, data from the European Monitoring Centre for Drug and Drug Addiction and the European Drug Report indicate that diversion of prescription opioids is not a serious problem in Europe. In other regions of the world, per capita prescription of opioids is very low.

Drs. Martins and Ghandour claim a high prevalence of non-medical use of prescription opioids in Saudi Arabia. However, those medicines are hardly ever prescribed in that country and medical consumption rates are only about 2.5 % of the U.S. volume. Therefore, Saudi Arabia’s non-medical use of prescription opioids can hardly originate from prescribed opioids.

Unfortunately, World Psychiatry refused to publish a letter I wrote with other experts which addressed the misunderstandings stemming from Drs. Martins and Ghandour’s article.

PROP and the Anti-Opioid Lobby

The anti-opioid lobby in the U.S. does not shy away from using arguments not based on facts, just like Drs. Martins and Ghandour in their article. For example, Physicians for Responsible Opioid Prescribing (PROP) perpetuates the mistaken conflation of prescription and prescribed opioids, advocating in the U.S. against the legitimate medical prescribing of opioid analgesics. PROP tries to justify its position using false statistics, as I demonstrated in a recent publication.

Moreover, PROP leadership participated in drafting the 2016 CDC Guideline for Prescribing Opioids for Chronic Pain. PROP Executive Director Dr. Andrew Kolodny disclosed his involvement, but PROP President Dr. Jane Ballantyne and PROP Vice President Dr. Gary Franklin did not list the group as a relevant conflict of interest on their disclosure forms.

The Steve Rummler Hope Foundation is the “fiscal sponsor” of PROP. Its vision is “a world where individuals with chronic pain receive integrated care focused on wellness rather than drugs.” For patients with moderate or severe pain, this can hardly be an effective and humane treatment. PROP’s close ties with the Steve Rummler Foundation are revealed by Dr. Kolodny’s and Dr. Ballantyne’s membership on its medical advisory committee.

Policies Should Balance All Public Health Interests

Indeed, it is correct to attend to the non-medical use of psychoactive substances. However, the situation outside the U.S. is really different. In many countries, patients have no access to adequate pain management. Measures to address non-medical use of opioids should not hamper access to effective pain management.

Policymakers in countries with a low per capita medical opioid consumption and low prescription rates should first analyse how prescription opioids that have not been prescribed enter circulation. The relationship between the non-medical use of prescription opioids and illicitly produced substances such as heroin should also be taken into consideration. Then, appropriate interventions to halt the diversion should be developed.

In parallel, policymakers should develop policies aimed at ensuring adequate provision of pain treatment as recommended by the World Health Organization. Optimal public health outcomes can only be attained when policies to minimize non-medical use are balanced with policies to maximize access to adequate pain management. Crafting such policies entails correctly distinguishing between prescribed and prescription opioids.

Willem Scholten, PharmD MPA, is an independent consultant for medicines and controlled substances at Willem Scholten Consultancy in the Netherlands. This has included work for DrugScience, Grünenthal, Jazz Pharmaceuticals, Mundipharma, Pinney Associates and the World Health Organization. Dr. Scholten is also a board member of International Doctors for Healthier Drug Policies.

He wishes to acknowledge Dr. Katherine Pettus for her contribution to this article.

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 Media’s Addiction to Opioids

By Roger Chriss, Columnist

A recent and very brief CDC report described 59 pneumonia deaths in Minnesota between 2006 and 2015 that involved opioids. The gist of the study was that “opioid users are at increased risk for pneumonia” and therefore the deaths should have been reported as opioid related overdoses, even though the autopsy reports list pneumonia as the cause of death.

Vox said the study suggests “the opioid epidemic may be even deadlier than we think,” while the Daily Mail warned it was “just the tip of the iceberg” and that “we may have grossly underestimated the scale of the opioid epidemic.”

JAMA Surgery also recently published a study, which found that about 6 percent of surgery patients continued to use opioids more than three months after their surgery.

U.S. News cited the study to proclaim that “Many Opioid Addictions Surface After Surgery,” while MedicalXpress said it was proof that someone could go “from opioid-free to long-term user, in one operation.”

Both the CDC report and the JAMA Surgery study were grossly misrepresented. Fear sells, and the opioid crisis has become a favorite source of fear-mongering in the media.

The CDC report is a one page, four-paragraph document released by the agency’s Epidemic intelligence Service (EIS). It never mentions the words “addiction” or “epidemic,” yet it leaps to one very big conclusion.

“The total burden of opioid-associated deaths was underestimated in Minnesota,” the report says. “The contributions of opioid toxicity, infectious disease, or their interactions to death are challenging to disentangle; understanding these interactions might inform future opioid-related mortality prevention efforts.”

The JAMA Surgery article is a retrospective study which found an association between post-operative use of opioid medications for pain management and patient history of smoking and alcohol use. The study looked at opioid abuse only as an exclusion criteria for the patient population; it was not a study about addiction in any form. The JAMA article concludes by saying that “new persistent opioid use represents a common but previously underappreciated surgical complication that warrants increased awareness.”

In other words, we have intriguing results that should be investigated further, with the ultimate goal of improving public health and welfare. Unfortunately, all that is lost in the alarmist media coverage that mischaracterizes the findings, over-interprets the data, and extrapolates consequences to reach what at best are highly premature conclusions.

In its coverage of the CDC report, CNN quoted EIS officer Victoria Hall, DVM, as saying that the Minnesota data represents “an iceberg of an epidemic.” 

Keep in mind that Hall is not an epidemiologist, an infectious disease specialist or an expert on icebergs. She is a veterinarian by training and a recent graduate of Mississippi State University's College of Veterinary Medicine. Hall has been working for the CDC less than a year, according to her LinkedIn profile.

In a CDC media briefing, Hall refers to only one specific case in Minnesota: a middle-aged man dying of pneumonia, who was on opioid therapy for chronic back pain. This case is not mentioned in the CDC EIS report. His death may be an important hint of a new facet of the opioid crisis, or it may be an anomalous outcome. More work is needed to figure out what is really going on. For now, it bears remembering that the plural of anecdote is not data.

VICTORIA HALL, DVM

Similarly, U.S. News reported on the JAMA Surgery article by stating that, “Some surgery patients prescribed opioids for post-operative pain relief may face a high risk for developing a long-term opioid addiction, new research warns.” This report also appeared on Philly.com  and on WebMD , spreading the misinformation about addiction risks, which were never even mentioned in the article.

In other words, there was a huge and speculative leap from the data in the CDC report about 59 opioid-related pneumonia deaths over a decade-long period all the way to a stealth epidemic sweeping the nation. And an equally large jump from an association between the duration of post-surgical opioid use and patient social history to a new source of opioid addiction.

The sensible response is to call for further research. For the CDC, this means collecting data from all 50 states about otherwise unexplained deaths and seeing if opioids are involved in any of them, then following up with analysis on possible under-reporting. For the world of surgery, this means performing prospective trials to see if the reported association holds up, and then investigating if such use increases the odds of a patient developing opioid use disorder.

For now, we just don’t have the data to figure out what is going on. And as Sherlock Holmes says: “It is a capital mistake to theorize before one has data.”

Roger Chriss suffers from Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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

The Difference Between Addiction and Dependence

By Michael Thompson, Guest Columnist

When a person consumes alcohol or takes a mood altering medication, several things start to happen. First, they begin to develop a tolerance for it, so that over time it takes more of the drug to get the same effect. That can lead to abuse and addiction.

A person may also develop a dependence on a drug.  That means they have a clinical need for a medication.  

Many pain sufferers have found they need more opioid medication to provide relief from their pain, but that doesn’t mean they abuse or misuse it. It also doesn’t make them addicts.

I am dependent on my blood pressure medication to keep my blood pressure in check, but I’m not addicted it. Diabetics are dependent on their medication, but they are not addicted. 

Last year the CDC came out with opioid prescribing guidelines for general practitioners. But restricting the legal prescribing of these drugs will have no effect on the fact that most addicts don’t get their medication from Walgreens or Wal-Mart.  They get their drugs from Bobby the Rat behind Walgreens, or behind the pool hall from Billy the Snitch or Joe the Jerk.  What Bobby, Billy and Joe are selling is heroin, counterfeit painkillers and other illegal drugs.

What effect do these restrictive guidelines have on the illegal use of opioids?  None whatsoever.  The prescribing of opioid painkillers has been on the decline for years.  Most people who overdose are killing themselves with illegal drugs, not drugs obtained from their family doctor. 

Sure, everyone has heard of doctor shopping junkies who will go to an unscrupulous physician, who for $20 in cash will write an opioid prescription without even an examination. But the number of addicts pales in comparison to the number of legitimate chronic pain suffers who have been on these quality-of-life saving drugs for years without ever abusing their medications. Most have no idea where to find Bobby, Billy or Joe, or how to go about buying illegal drugs on the street.

Millions of older adults suffer from osteoarthritis and other neurologically painful conditions for which there is no cure, but there is treatment.  Many are on high doses of pain medication and have been taking these drugs for years, without ending up in the gutter shooting heroin or with a tag on the toe, lying on a tray in in the county medical examiner’s office.  They are not the ones causing headlines. 

Many doctors wrongly believe the CDC guidelines are rules that apply to all who prescribe opioid medication.  They fear that the DEA will come barging in if they go over a minimal amount, prosecute them and take away their license.  Their fear has left many chronic pain patients hanging out to dry, including some who will die because their pain is not being appropriately treated. 

If you have ever suffered from chronic, intense pain you are aware that it is all consuming.  It literally takes over your life.  Many, like me, who once led active lives on high doses of opioids, are now housebound, unable to shop, cook, clean or in many cases even just walk from the bedroom to the kitchen. 

It is a horrible existence, sitting in a chair all day, just trying to make it from morning to evening, and then unable to sleep because the pain is so intense.  Many of these once functional chronic pain sufferers have had their medication cut in half or more. 

As a personal example, I have two torn rotator cuffs that won’t heal.  I have had two surgeries that failed to correct the problem.  My surgeon says he won’t do any more surgeries because the rotator cuffs just continue to tear.  But that’s not all.  I have no cartilage left in my knees, a detached bicep tendon in my left elbow, and peripheral neuropathy in my feet and hands that causes them to burn and ache.  It’s been years since I was able to wear shoes. 

Before the CDC guidelines came out, I was on 6 pills of opioid medication a day.  I had been on this dose for five years and never once abused my medication or took more than was prescribed.  I was able to play golf and worked out three times a week, which helped me to keep my weight off.  When my pain specialist cut my dose in half, I literally crashed and burned.  Since then I have been practically home bound.  My story is similar to that of many other chronic pain sufferers.

So what do we do?  Practically every chronic pain patient has been running from one doctor to another, trying to find someone who will maintain them on the medication that helped them to live a somewhat normal life.  Imagine going to a new specialist, only to find the waiting room filled with dozens of other “new patients” trying to find someone, anyone, who wasn’t terrified of the DEA.

Is the CDC aware that their guidelines for primary care doctors have turned into rules for everyone?  Surely someone has told them about this.  Surely they know.

What’s to become of us?  Will we see a spike in the suicide rate of older adults who can no longer stand the daily struggle?  Will anyone care?

There are a lot of organizations that have tried to explain that the guidelines are not hard and fast rules and that they apply only to general practitioners. But fear is a stronger motivator than common sense. 

It cannot be that drug addicts are more important than patients. Don’t suffer in silence. Call, write a letter, or email your senators and congressman.

Don’t know who represents you in Congress? You can look them up by clicking here.

Michael Thompson is a retired clinical social worker and a licensed chemical dependency counselor. He lives in Texas.

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.

West Virginia Moves to Stop Opioid Madness

By Kenny Brooks, Guest Columnist

When most people think of West Virginia, they think about mountains, coal mines and miners.  The number of coal miners in West Virginia suffering from black lung, cancer and other chronic illnesses plays a significant role in the state's high rate of disability, estimated at nearly 20 percent of the population. 

Many military veterans in West Virginia also suffer from lifelong pain and disability, as do injured public safety employees, police, firefighters and paramedics. I was severely injured as a paramedic in a work related accident and now live with arachnoiditis, a painful inflammation in my spine that will never go away.

All of this pain and disability has a significant impact on our state. The per capita income of West Virginia is only about $37,000 a year, making it one of the poorest states in the union.  About 23% of West Virginians live below the national poverty line.  We rank 5th highest in suicide and have the highest overdose death rate in the country.

West Virginia was one of the first states to crackdown on pill mills and doctors who overprescribe opioids, but opioid overdoses continue rising, especially from heroin, illicit fentanyl and addicts taking pain medication.

The CDC’s opioid prescribing guidelines only made things worse for real pain patients, causing many to be under treated or abandoned by doctors who took an oath to relieve pain and suffering.

West Virginia lawmakers have seen enough of this suffering. In an unprecedented move, the legislature this month passed Senate Bill 339, with the goal of restoring the integrity of chronic pain management in the state.

The bill was introduced by State Senator Tom Takubo, DO, a pulmonary physician who specializes in treating patients suffering from lung and breathing problems.  Dr. Takubo understands the ethical duty to act, and to help alleviate chronic suffering and pain from incurable chronic conditions.

Senate Bill 339 was approved unanimously by both the House and Senate, and was signed this week into law by the governor.  It recognizes that regulations have caused “patients seeking pain treatment to suffer from a lack of treatment options” and that “prescribers should have the flexibility to effectively treat patients who present with chronic pain.”

The bill also establishes a commission -- called the Coalition for Responsible Chronic Pain Management -- to advise the legislature if a “less cumbersome” manner exists to regulate pain care in the state.

The Coalition will consists of the following members:  The Dean of the School of Public Health at West Virginia University, a physician board certified in pain management, three physicians licensed to practice in West Virginia, a licensed pharmacist, a licensed chiropractor, a licensed physical therapist experienced in the area of chronic pain, and a consumer of healthcare services directly impacted by pain clinic regulations – in other words, a pain patient.

We have about a month before the appointments are made and I am hopeful that I will be appointed as the patient representative. I hope to bring to the Coalition not only my experience as a pain patient, but my experience as a paramedic.  I spent many hours in school years ago learning about medical and legal issues, and believe I have a unique perspective to bring to the table.

My goals are simple: to change the regulations and prescribing guidelines back to individualized patient centered care, not addiction centered algorithms. I am also concerned about doctors being afraid to treat pain patients due to legal reprisals.

I hope to bring a voice of reason to the Coalition, and to help other states look at what we are doing in West Virginia to stop the opioid madness.  

Kenny Brooks is an arachnoiditis survivor and former career firefighter in Montgomery County, Maryland.  He loves his family, his church, his dog, his friends, and he feels very blessed to have a great team of medical doctors and pharmacists who understand quality of life medical care. Kenny became more involved in politics following the sad consequences he witnessed in other arachnoiditis patients due to the CDC guidelines. 

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.

Limiting Opioids for Acute Pain Will Hurt Everyone

By Patricia Young, Guest Columnist

There is a bill in Congress that, if passed, will have a great negative impact on most people in this country. The legislation by Senators John McCain (R-AZ) and Kristen Gillibrand (D-NY) would limit your doctor’s ability to treat short term acute pain by restricting the supply of opioids to 7 days. This would be a prescription that could not be renewed.

Several states have passed or are considering similar measures to limit the initial supply of opioid medication to a week or less.

I am not sure how these senators came up with the magic number of 7 days for all types of acute pain, but this will cause much undue suffering for innocent people.

As a registered nurse who worked in hospitals and nursing homes for 32 years, I have firsthand knowledge of what happens when acute pain goes untreated. Patients who suffer from acute pain often cannot sleep and become agitated at a time when rest is imperative for healing.

There are many painful and complicated surgeries that make a blanket 7 day restriction on opioid medication absurd. Post-surgical patients often do not stay in the hospital long and the continuation of pain medicine is vital to their healing process. Gastrointestinal surgery often results in an open wound requiring constant dressing changes for weeks.

Most people will eventually be adversely affected if such a bill if passed. Pain is real and comes with most surgeries and many medical conditions.

I recently had arthroscopic hip surgery. I had not been prescribed pain medicine for over a year. At one time I was taking opiates daily, but taking them in that fashion never worked for my chronic pain issues and caused adverse reactions, such as gastroparesis and severe sleep apnea. However, I knew that I would not do well after hip surgery without some pain relief.

I told my surgeon about the adverse reactions and he gave me a prescription for Percocet to use for the first 2 weeks following surgery. I felt good that this doctor had my history and I trusted him to regulate my pain medicine.

I had my surgery done as an outpatient and returned home the same day. My husband took the prescriptions signed by my surgeon to the pharmacy and returned with all of the medications, except for the Percocet. By this time I really needed some pain relief and called the pharmacy to see what happened. I was told that they were not going to fill the prescription for Percocet. They told me my Medicare Advantage Plan (Aetna) was rejecting payment for it.

This was the type of news you just do not need after a painful surgery! I immediately went from feelings of anger to hopelessness. In a couple of weeks I was going to begin 3 months of grueling physical therapy so I could walk again. I also wondered what people did for pain after more complicated surgeries which take longer to recover from. What is happening? Is the government regulating our healthcare so that an insurance company or Medicare can deny coverage for a surgeon’s prescription for post-op pain?

I explained to my pharmacy that my prescription for Percocet was for acute pain following a surgery. The pharmacy decided to look into it. I was fortunate, I was allowed this one prescription filled, but no more. The pharmacy said they would not fill another prescription for a painkiller even if prescribed by my surgeon.

I was only partially relieved now. I knew I had a painful road ahead with 3 months of physical therapy. I looked at the bottle of pain pills and thought this must last throughout my 6 month estimated recovery time. I made the decision to not take a pain pill that day. Yes, I was having a great deal of pain, but I felt I had to take them sparingly. I lost several nights of sleep due to pain because I was afraid to use my pain medicine.

By the 6th day post-op, I had only taken 3 Percocet pills and my pain level was an 8 while lying still. I called my insurance company to verify that I would get no more prescription coverage for pain medicine as the pharmacy had said. I was told different information. My insurance would allow coverage for another prescription, if my surgeon writes one, as long it was not over 180 pills for a month.

My fears about pain during physical therapy were eased and I was relieved that I could start taking my pain pills as prescribed. But why would a pharmacy tell me the wrong information?

This may be why people have to go to several pharmacies to get pain prescriptions filled. It is not because they are addicts or misusing their medication, but because pharmacies are too afraid to fill legitimate prescriptions.

Do cookie cutter rules and policies for pain treatment really promote healthcare for everyone? Or are they simplistic solutions to try and put a band aid on a problem that is completely different -- the disease of addiction?

Patricia Young lives in Florida. In a previous guest column, Patricia shared her experience about being falsely accused of having a “history of addiction.”

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.

Insufficient Evidence: How Opioid Deniers Spin Studies

By Roger Chriss, Columnist

Opioid medications are coming under fire again as being ineffective for chronic pain management.

Charles Pattavina, MD, president of the Maine Medical Association, told the Portland Press Herald that "there is no clinical indication for opioid medication for the treatment of chronic pain."

And Stanford psychiatrist Anna Lembke, MD, said in Vox that “if opioids worked long-term, I would have no problem with patients taking them.”

But sweeping generalizations like these oversimplify a complex situation. Chronic pain is a highly heterogeneous feature of a wide variety of diseases and disorders. And opioids are a broad class of pain medications that come in different doses and are administered by different routes.

Thus, a claim that opioids do not work for chronic pain is too simplistic. Medical researchers investigate carefully posed questions about specific drugs and conditions using the statistical method known as hypothesis testing.

Researchers cannot and do not investigate if “opioids” work for “chronic pain.” Good research is more narrowly focused, such as these clinical studies:

“Tapentadol extended release for the management of chronic neck pain”

“Effectiveness and Safety of Once-Daily Extended-Release Hydrocodone in Individuals Previously Receiving Immediate-Release Oxycodone for Chronic Pain”

“Oxycodone for neuropathic pain in adults”

The results are equally specific. In the first example above, the authors conclude that “our results suggest that tapentadol ER, started at 100 mg/day, is effective and well tolerated in patients with moderate-to-severe chronic neck pain, including opioid-naïve subjects.” Similarly precise statements are found in any such article.

Sometimes researchers will perform a meta-analysis or review in which they assemble a collection of existing research articles and, after a statistical analysis, attempt to draw broader conclusions. Examples include:

“Opioids for chronic noncancer pain: a meta-analysis of effectiveness and side effects”

“Opioids for chronic pain: new evidence, new strategies, safe prescribing”

“The Effectiveness and Risks of Long-Term Opioid Therapy for Chronic Pain: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop”

The last article above is often cited by opioid deniers, even though it concludes that “evidence is insufficient to determine the effectiveness of long-term opioid therapy for improving chronic pain and function.”

"Evidence is insufficient” means that no determination can be made one way or the other about opioid medications. It does not prove that opioids are ineffective for chronic pain.

This leads to the final defense of opioid deniers: Demand an impossibly high standard of evidence. Specifically, they want the “gold standard” of clinical research: a double-blind, placebo-controlled, randomized trial of a specific drug for a particular condition.

To satisfy this standard, we would have to test every opioid medication against every medical condition causing chronic pain in a variety of different groups of people. This would mean thousands of trials, each performed multiple times, before any meaningful conclusions could be drawn about opioid medications in general. The time and costs involved would be prohibitive in the extreme.

So instead we use observational data and statistical methods to derive reasonable conclusions, as found in the articles above. This approach is widely used in many areas of medical research. In pain research, it has clarified how certain opioid medications can be used to address various chronic pain conditions.

To be clear, opioid therapy can help manage a variety of forms of chronic pain. Not all pain, and not for all patients. And always under the care and guidance of medical professionals.

The goal of opioid therapy is to improve quality of life, and available evidence strongly supports that it does so.

Roger Chriss suffers from Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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

Readers Sound Off on Fibromyalgia Drugs

By Lana Barhum, Columnist

In my previous column, “Lyrica, Cymbalta and Savella: Do They Work?” I shared research studies and my own experience with the three medications approved for use in treating fibromyalgia.

Clinical studies on all three drugs don’t seem to offer enough creditable evidence that they are effective in managing fibromyalgia symptoms.  Moreover, they carry very harsh side effects, including weight gain, edema, nausea, headaches, vertigo, sleep issues, and changes in blood pressure.

My experience was similar. Lyrica, Cymbalta and Savella were ineffective for me, and had some tough and life-altering side effects.

It makes me wonder why doctors are still prescribing these medications and why the Food and Drug Administration continues to allow them to stay on the market. 

In 2012, German researchers aimed to assess the benefits and harms of Cymbalta and Savella in treating fibromyalgia.  Ten studies with over 6,000 fibromyalgia patients were reviewed. 

The results were that 22 percent of patients reported substantial relief and 21 percent had to quit treatment due to unpleasant side effects.

In reader comments on our website and Facebook page, many of you had comparable experiences:

“Tried all 3…nothing but weight gain and dizziness. No pain relief. Still haven't found anything that works.”

“I've had multiple spinal surgeries and fusions, and have severe nerve damage. And severe chronic pain. So, I've taken all three of these meds. Without success.”

I will not discount the fact that Lyrica, Cymbalta and Savella work for some people, but they appear to help only about 20 to 30 percent of patients who try them:

“I take one 60mg (of) Cymbalta a day, and it doesn't take away all the pain, but it does make it a bit more bearable.”

“I am using all three. There is relief but in moderation.”

“I have been on Lyrica since 2007 and do have relief of my Fibro pain. I am also on Cymbalta, a muscle relaxant and pain med that really (does) make a difference with my Fibro, arthritis and osteo pain.”

“Tried Savella, no good. Lyrica did not decrease pain enough to continue. I've used Cymbalta and had good results. Best results have been from using Gabapentin (Neurontin) since 1996, up to 3600 mg daily.”

“I'm back on Lyrica and Cymbalta. I know of the side effects with this medicine but it is the only option that remotely helps.”

The effectiveness of Lyrica and Cymbalta, in particular, has been hyped up with aggressive advertising by their manufacturers. And while research and patient experience show improvement on any of the medications is spotty at best, doctors continue to prescribe them.  This is yet another example where the medical field, in general, has not done a good job in treating, understanding or advocating for fibromyalgia patients.          

Side effects reported by readers to the three drugs include dizziness, mood changes, cognitive issues, swelling, sleep issues, weight gain, increased blood pressure, blackouts and more.  Many of these side effects have a detrimental effect on the daily lives of fibromyalgia sufferers – as if our lives were not difficult enough.

“Lyrica was the worst! I became a sleep-walking zombie. I was so out of it at night that I rarely made it to bed laying down. I would find myself in weird places asleep, such as with my head resting on the faucet in the bathroom sink. Or, I would sleepwalk and fall, like down the stairs. Certainly not good for helping my pain!”

“Lyrica did nothing for me. Cymbalta changed my personality completely. I became mean and hateful. When I asked the (doctor) about it, he's like, yeah that can happen.”

“I have taken Neurontin, Lyrica, Savella, and currently take Cymbalta. Neurontin gave me bad nausea, and the feeling of bugs crawling all over my body. Lyrica made me gain a lot of weight, and didn't help my pain at all. The Savella was the worst for me, it gave me very bad suicidal thoughts, so bad I had to stop taking it, it also never helped with pain.”

If only there was an ideal treatment for fibromyalgia -- one that would offer real relief from the worst symptoms and with few side effects.  But such a treatment could only come with a real understanding about the causes and symptoms of fibromyalgia, and I don’t feel medical research has gotten there yet.

The worst part of my experience with fibromyalgia is trying countless treatments to no avail. And there is nothing worse than being told, as I was, by a medical provider that if you expect real relief, you should also expect side effects and learn to cope with them. That statement shows what little understanding and empathy the medical community has about fibromyalgia, its process, and its difficulties.

I wish I had some good treatment advice to offer, but the fact is, like so many of you, I am exhausted. Years of trying medication after medication has left me weary of the medical community and the companies that manufacture fibromyalgia drugs. 

I have accepted defeat and refuse to try anything new.  Neurontin, Cymbalta, and muscle relaxers offer me some relief from nerve pain, depression, and muscle spasms, so I continue to take them.   Even so, I still live with widespread muscle and tissue pain, and a whole host of other symptoms fibromyalgia brings in its wake.

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.

Is Your Medical Marijuana Safe to Use?

By Ellen Lenox Smith, Columnist

When you smoke, ingest or administer medical marijuana into your body, it is important to know that it is safe to use. Ideally, the marijuana was grown organically and is pesticide free.

Here are simple tips that might help you to determine where you stand.

Purchasing from a Private Grower:

• Be sure to check with them to see what products they use for the soil and nutrients, to be sure the plants are growing organically.
• Most growers will at some point have to face a bug infestation. Make sure they got rid of them by using an organic product. You do not want to ingest toxic substances.
• You also need to know how they work on being consistent in creating their oils, tinctures, topical ointments and edibles. It is important when you find a medication that is compatible with your body, and that you be able to purchase it again and have similar results.

Purchasing from a Marijuana Dispensary:

If you are going to a medical marijuana dispensary or compassion center to purchase cannabis, you have the right to ask those same questions.

• Do they know who their suppliers are and where the marijuana was grown?
• Do their suppliers grow organically?
• Ask how they make sure there is consistency in creating their tinctures, oils, edibles, drinks, etc.

Americans for Safe Access (ASA) has created standards for medical marijuana called Patient Focused Certification (PFC), a non-profit, peer reviewed, third party certification program for the medical cannabis industry.

PFC addresses product and safety concerns “to promote the adoption of safe and reasonable industry standards and regulations from seed to consumption.”

If you see a marijuana package carrying the PFC label, like the image to the right, it has met their standards and has been certified.

Don’t be shy. This is your life and your body. Be sure to know that whoever you purchase your medication from, that it is being grown safely for you!

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their 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.

Fuzzy Opioid Math and Media Theatrics

By Roger Chriss, Columnist

The Centers for Disease Control and Prevention recently produced a map that shows how prescription opioid use varies widely from state to state. Californians, for example, are prescribed opioids at about half the rate as people in Ohio and West Virginia.

The CDC also tells us that doctors “wrote 259 million prescriptions for painkillers in 2012, enough for every American adult to have a bottle of pills.”

Because an epidemic is a statistical phenomenon, defined by numbers derived from data, caution is required when presenting and interpreting such results.

The media has been anything but cautious in using these numbers as fodder for sensational anti-opioid reports.

CDC GRAPHIC

“These pills didn’t just end up in patients’ hands; they also proliferated to black markets, were shared among friends and family, landed in the hands of teens who rummaged through parents’ medicine cabinets, and so on,” Vox reported, overlooking the fact that less than one percent of legally prescribed painkillers are diverted.

Some use the prescribing numbers to make a case for extreme measures to stop opioid addiction and overdose.

“In 12 states there are more opioid prescriptions than people,” David Brooks wrote in The New York Times, before suggesting an approach to addiction treatment that sounds like it came out of Les Misérables.

“Something like half of all sufferers drop out of treatment within a few months, so it might be worth thinking about involuntary commitment,” Brooks said.

“Legally, by prescription, we have created an epidemic of death,” chimed in New Hampshire attorney Cecie Hartigan in an op/ed published by the Concord Monitor.  “What point is there in alleviating pain for people if it’s going to kill so many of them?  Except in cases of end-of-life care, opioids should not be prescribed.”

Unfortunately, a prescription is not a unit of measure, and statements like these only add to the hysteria and fuzzy math.

An “opioid prescription” is as imprecise as a “bottle of alcohol.” Obviously, a bottle may be small or large, and the alcohol it contains may be strong or weak. As a result, having a small bottle of beer with dinner would be unremarkable, but drinking a large bottle of vodka would be alarming.

This is the mistake in the CDC graphic and opioid prescription counts. A prescription is a paper or electronic document, specifying a particular drug in a particular strength given in a particular quantity -- which makes it unsuitable for statistical use. A prescription for 5 tablets of 50 mg of tramadol cannot be usefully compared with a prescription for 30 tablets of 25 mg of oxycodone.

The CDC’s fuzzy math paves the way for a lot of confusion. Media reports give dramatic percentages of people using prescription opioids, warning of dire consequences from even a few pills.

“If patients get their hands on a second dose, one out of seven will form an addiction. In the event that patients must take a long-acting opioid, about 25% will still be using the drug one year later,” Dr. Manny Alvarez wrote in the Fox News website, apparently unaware less than two percent of people prescribed opioids actually become long term users.  

National Public Radio reported that 57% of American adults in a recent poll said they had been prescribed a narcotic painkiller, and then went on to claim that “as many as 1 in 4 people who use opioid painkillers get addicted to them.”

There are 242 million adults in the U.S. population, so if 57% were prescribed opioids and one fourth of them became addicted, that would give us 34.5 million people addicted to painkillers. This is clearly not the case.

The American Society of Addiction Medicine reports that there are approximately 2 million prescription opioid addicts. These people need treatment, not media theatrics.

Moreover, 259 million prescriptions does not mean that 259 million people have a year’s supply of an opioid. In most cases, people receive a short course of a weak opioid, enough to help with acute pain after trauma or surgery.

As for long-term opioid use, the National Institutes of Health states that “an estimated 5 to 8 million Americans use opioids for long-term management.” Studies show that only a small percentage become addicted to their medication.

Surely we don’t need opioid detention centers or opioid prohibition. That would not help the people struggling with opioid addiction or people living with chronic pain disorders.

Ignore the fuzzy opioid math and related theatrics, and focus on the 2 million people struggling with opioid addiction and the 5 to 8 million people living with chronic pain conditions. They deserve our care and consideration, and certainly won’t benefit from media melodrama.

Roger Chriss suffers from Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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

Get the Facts Right About Opioids

By Barby Ingle, Columnist 

This past week Tucker Carlson aired a series of reports on Fox News about opioids and addiction. After night two of watching the “Drugged” special segments, I wondered if Fox would be willing to tell the patient side of the story and wrote to some Fox News producers I know to see if they wanted to interview me.

I didn’t know the specific producer for Carlson, but the next morning I received an email from her. I immediately responded and said yes, I would come on the show. We set it up for Thursday or Friday. Well, on Thursday we bombed Afghanistan with the “Mother of All Bombs” and they were unable to get me in.

The producer did say that they would be doing additional segments on the topic and that they are interested in bringing me on sometime in the next few weeks.

I watched the rest of the series, and on Wednesday Carlson said that 60 percent of veterans have chronic pain. That didn’t sound right to me and I wondered where Carlson got his facts from. He never said in his broadcast.

When I looked it up, I found a 2014 study in JAMA Internal Medicine that said 44% of military personnel develop chronic pain after a combat deployment. Also, not all of them are taking opioids as Carlson reported. Only 15% are taking opioids – compared to 4% in the general population.

When I get my chance to speak to Carlson or any other news outlet, I always suggest that we not take opioids off the table as a form of treatment for those with chronic pain. It is not the right thing to do in my educated opinion as a chronic pain patient. There are hundreds of treatment options, but many patients can’t afford them and insurance often won’t pay for them. You can’t leave patients without options.

Many people I know, including one of my best friends, committed suicide because of lack of proper and timely care. She wasn’t looking for opioids, she was looking for relief. She jumped from a 10-story building in New York.

Another friend spent months fighting for her medication after her insurance would no longer pay for her infusion therapy. Once her doctor finally gave her a prescription for fentanyl patches, she went home, put on all 60 patches and tried to commit suicide. She was found in time by her husband and was in a coma at a hospital for about a week.

When she awoke, she was pissed that they didn’t let her die. She wanted to die because she didn’t know how she was going to get any pain relief going forward. My friend is in an even worse situation now because the attempted suicide is on her medical record. She wants infusion therapy, but is denied it -- even though it gave her life back when she did have access to it.

I have been living with chronic pain for 20 years. This year I have been unable to find a provider who will even charge my insurance company for the infusion therapy that keeps me out of my wheelchair. I choose not to use opioids daily because they don’t work for me. But I don’t want to take them away from someone who they do help. That decision needs to be on an individual basis, between a provider and their patient.

We need to encourage pharmaceutical companies to address the addiction and tolerance in pain medications, and one way is the use of abuse deterrent formulas. Another is to get insurance companies, Medicare and workers compensation to cover alternative treatments so that we have more options. And for those who tried and failed with other treatments, we need to keep opioid medication available.

Patients also need to be responsible for their own actions and choices. Recently my doctor gave me a new script. Before filling it, I went home, Googled it, and saw the medication has potential negative side effects. I will be talking with my provider again in a week and will let him know that the medication is not right for me.

Patients need to be proactive about reading medication labels and inserts, and looking up information on our treatment options. We must educate ourselves and we must ask our providers questions. Being a responsible patient will lower the risk of abuse, and increase our access to proper and timely care.

Addicts are going to abuse no matter what is available. We chronic pain patients are simply asking for a seat at the table. Instead we are portrayed as wrong doers, who just want to get high on pain pills.

Carlson ended his week long series by saying he will continue to bring different voices and information to his viewers. His producer personally echoed that sentiment to me. I hope to be given the chance soon to come on his program and tell the patient side of the story, and the many challenges we face getting proper and timely pain care.  

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

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