Learning to Cope With Loss

By Mia Maysack, PNN Columnist

There has never been an employment situation that has not been impacted by my chronic migraines, fibromyalgia and other health conditions. I'm a worker bee but pushing myself too hard for too long while trying to keep up has resulted in my inability to pursue aspirations that are not physically feasible.

The realization of not being able to live up to who you feel like you are is a tough one. A person cannot refrain from asking: What is wrong with me?

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All the while, outsiders ask the same question, most with a hinge of disbelief pertaining to "invisible illness."

She looks and seems fine. Is anything really wrong with her?

In that regard, I've chosen to no longer stress over occasionally needing to wear my sunglasses indoors.

At least people can see those!

It can be a difficult concept to understand, how someone can seem fine one day, then be bedridden for the duration of any given week. Things we may have been able to do, even just the day before, vary moment by moment.

I’ve sensed an undertone of judgement regarding what taking proper care of myself looks like. A few examples of what I mean: 

“Must be nice to lie around in bed all day!”

“You’re still sick?”

“I have headaches too, but still manage to….”

In an effort to alleviate the pressure of these expectations, I've gotten to the point that I do my absolute best to avoid making commitments or plans. I only make them with those who understand my need for sudden disappearances, last minute cancellations, awkward positioning and random yoga stretches.

One of the greatest gifts I've ever given myself is taking good care of and putting myself first. Despite what seems to be a popular belief, that doesn’t mean trips to a day spa or an exotic beachfront. Pursuing self-care for me is the difference between being somewhat functional or a dungeon dweller.

Every time my health interferes with whatever I had my sights on, it’s like ripping gauze off a wound that’s not yet healed. It reopens its own spectrum of painful emotions, often leading to guilt over missing out and all those our absence is impacting. It’s a double-edged sword in a battle I seemingly cannot win.

It can be frustrating, but inward compassion is imperative. Think of it this way: When we know someone we care about is feeling unwell, what do we do? We offer support, advise them to rest, take the time they need, and do whatever is necessary for the sake of their health and healing.

We as chronic pain warriors deserve the same compassion, empathy, respect and self-care. I've learned over the years that forgiveness, patience and grace for ourselves is just as important as having that capacity for others.  

My experience has mostly been a lonesome one. Never once have I had a medical professional ask me how I am coping with these heavy burdens that are anticipated to be lifelong. I have still not been able to fully comprehend the gravity of what that diagnosis means.

It has been an excruciating process to get to where I am now. There's no guide book for this stuff, we gotta just keep trying until we find a way to make all of this serve us -- as opposed to the other way around.

I prefer now to find the positive in changes as they come, not worry about them until they do, and neglect the urge to over-analyze them long after they've arrived.  For me, it’s all about finding the joy, beauty and blessings in the given. There is always something to be appreciated and admired.

We must remain true to ourselves, even through and despite the turmoil of chronic pain. It may not reflect the vision we once had, but there’s no need to look back.  We are not headed in that direction anymore.  

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

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

Lightening the Load Over the Holidays

By Carol Levy, PNN Columnist

There was a train full of sewage traveling through Alabama. One town found the smell so horrid, likening the stench to “rancid meat” or worse, that they refused permission for the train to enter the town or even stop to transfer loads.

Another town welcomed the train. “Let it come. The smell can't be as bad as they say. They're exaggerating,” they said.

But then the train arrived. The second town found the stench to be as utterly revolting and repulsive as the first town had said. The second town had to experience it firsthand before they would believe a train could emit such noxious smells.

Sound familiar? I’ve always felt that those of us with chronic pain are singled out in a similar way, when we are disbelieved and told the pain "is all in your head.”

But if it can happen when people have a freight train full of sewage in their backyard, and even they are not believed, it gives me hope. Maybe we are not so different after all.

What does this have to do with the holidays, you ask?

When I heard about the train and the reaction to it, it started me thinking. The holidays are fast approaching and so are all the dinners and social gatherings that come with them.

I see the worries starting as I read posts on Facebook and elsewhere. Will I be able to do whatever they ask me to do? Will I have the energy to stay and make small talk and play with the kids? Will my family and friends accept me as I am, respecting my limitations and boundaries?

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We can only answer those questions in the theoretical. We don’t know what the reality will be, how we will be, and how others will be when the holidays arrive.

Maybe now is the time to prepare ourselves. To realize some people will be respectful, helpful, compassionate and empathetic; while others will turn their backs on our needs and us. We often already know who will do what. We know who thinks, “It's not so bad. You're exaggerating.”

And like the first town with the sewage train, the residents' lives brightened and the stench dissipated when they got rid of the train. That is the thing about visiting. You know you can leave.

As the holidays approach, it is important that we allow ourselves the freedom to accept the caring folk, as well as the uncaring; the kind as well as the nasty; and the helpful as well as the hurtful.

And, most important of all, we must accept ourselves and all that we are.

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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.

Living with Chronic Pain: Acceptance or Denial?

By Ann Marie Gaudon, PNN Columnist

It’s commonly understood that chronic pain not only negatively influences our physical health, but also leads to changes in our sense of self, as well as how we experience the world around us.

An interesting Swedish study set out to explore these factors. Twenty people with long-standing musculoskeletal pain were involved. Each participant completed 20 “qualitative” interviews -- which means the questions were designed to lead to descriptive answers, not hard data such as numbers or graphs on a chart.

The opening question was asked like this: “Please describe your problems. I’m thinking of the problems that made you contact a physiotherapist?”

All of the questions were focused on the participant’s perception of his or her body and were open-ended enough to encourage them to provide a narrative of their lives. After the answers were collected and analyzed, four distinct typologies emerged.

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Typology A: Surrendering to one’s fate

In this typology, subjects do not oppose their pained body. They accept that their pain cannot be eliminated, so why battle against it? They are aware of their limitations and adapted accordingly.

When you accept pain, you can still engage in more important (non-pain) aspects of life. The pained body becomes more integrated with life when the person trusts their ability to cope with the unpredictability of it. Listening to signals and adapting becomes the norm. One participant described it this way:

“No, I don’t rely on my body, because I never know when the pain will come… I always have to consider how to carry things through, what I am doing, why I do it… to prevent pain afterwards. It (the body) is with me and I am the one who decides”

Typology B: Accepting by an active process of change

In contrast to Typology A, in this typology people accept pain through deliberate and active coping strategies. Attitude is adapted in the face of the new reality of living with pain, and it becomes possible to undergo positive change and go on to a richer life.

The precondition for this change is believing that the body and soul are closely linked. Participants describe a previous total lack of body awareness that changes to a life where the body becomes a wise teacher. They look to the future with optimism, while realizing it will take great effort.

The integration of the aching body into life requires a trusting and hopeful cooperation between self and body; there is trust that the body will help even when in pain. The pain puts the body in the foreground. When pain is not being fought against, it enhances both body awareness and self-awareness. One description read like this:

“…growing consciousness is the only, the only way to take control of the pain.”

Typology C: Balancing between hope and resignation

Here researchers found that major changes in life brought on by constant pain put the subject into a state of ambivalence. There is a pendulum swing back and forth between accepting and rejecting the aching body. Hope sees a way forward, but time after time despair sets in.

Integrating the aching body into life becomes problematic and the relationship with the body seems unclear at best. The subject swings from listening to the body to avoiding it.

Accepting this burdened body is necessary to move forward, yet that change is not fully realized. Pain results in feelings of fear or worry. The cause of the pain is considered complex and the subject has a tendency to ignore warning signals.  An example of this:

“My pain started because I am too slender for cleaning work, I believe. This, I think, is how my pain all began but you go on and on and don’t listen to our body until it is too late.”

Typology D: Rejecting the body

In this typology, integrating the aching body into life is impossible and rejected. The word acceptance is considered an insult or a threat. The pain is impossible to accept. The aching body is an enemy, life is unfair and unsafe, and something worse may happen. The subject has no trust in the body and nothing helps.

Living in denial like this may be beneficial for overcoming a short-term crisis, yet the costs in the long run lead to an inability to cope. A quote from one participant:

“No, no, no, I won’t do it. No, I don’t know how my body will react in different situations… it is against me”

Clinical Implications

The results from this study indicate that chronic pain patients can be found along a broad spectrum from accepting to rejecting their aching bodies. Both body awareness and body reliance seemed to be important for acceptance to take place and for life to be manageable.

Reinforcing body awareness and reliance may be a possible way forward. Your body and life may not have played out how you had anticipated, but you can still adjust to life and living with a pained body.

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Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

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

The War on Drugs Is a War Against People in Pain

By Liz Ott, Guest Columnist

First, I want to say that I absolutely love my pain management doctor. He's an extremely well trained and respected doctor who really cares about his patients. I can always tell when it's not good news for me when he walks into the exam room, because it visibly hurts him to be unable to help his patients. 

I have fibromyalgia, arthritis everywhere, torn and bulging cervical vertebrae, and had a total replacement of my left knee. I haven't done the right knee yet, which I'm afraid to even think about.

Earlier this year my doctor explained that he was required to reduce my pain medications. I was shocked. He explained that new opioid prescribing guidelines were requiring patients to be reduced across the board, regardless of their condition. My pain medication was cut by a third and I wasn't happy about it at all. Especially when I've signed a pain contract, never went to any other doctors seeking meds, followed their procedures, taken drug tests, etc.

Since the weather was warm, I figured I had time to adjust to the lower dose before it started getting colder. Little did I know, this was only the beginning. 

A few months later, the doctor had the same face and the same news. I had to be reduced again. Now I'm only getting about half the Percocet and morphine I was getting before. I could barely manage my pain in cold rainy weather even with the old doses.

I've gone from being a mostly well-managed pain patient to a woman living with the very real fear of one day going in and being told that I am not going to get any pain meds. Just take some aspirin and deal with it.

In addition to the two opiates, I also take gabapentin, a muscle relaxer and Celebrex to offset the reduction in opioids. They don’t work!

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I have done nothing wrong, yet I'm being treated as an addict or criminal. I’ve been seeing the same pain management specialist since 2011. They know me. I don't abuse my meds, I take them as instructed and never had anything wrong with my drug screens. And yet I'm still being punished.

I've been out of work since 2017 and just got my medical retirement approved. I wasn't able to work even at my old dose. There have been emotional issues to contend with as well, like the sudden death of my husband.

Why are politicians making healthcare decisions for patients? Don't they know that this is going to cause the exact problem that they're trying to avoid? People who have been at the same doses for years who are suddenly not getting what they need will be desperate. They're going to resort to dangerous street drugs mixed with who knows what. Or risk breaking the law and use cannabis. They have no choice.

Yes, there is an opiate epidemic. I don't disagree with that. But chronic pain patients are being treated as addicts. They're being mandated into forced reduction by politicians, not doctors.

This must be dealt with another way or the statisticians will have another number to deal with: Suicides by pain patients who are unable to get relief. We would never limit insulin to a diabetic or heart medications to someone with heart disease. But it’s okay to keep cutting pain medications because they’re dangerous?

The black market street drugs have not been reduced at all. Just the legally prescribed pain meds. The war on drugs isn't against the illegal side. The real war is against people in pain.

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Liz Ott 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.

Pain Patients and Doctors Have Civil Rights Too

By Richard Dobson, MD, Guest Columnist

In a recent column, I described the diversion of blame for the opioid crisis as an example of “Factitious Disorder Imposed on Another,” a psychiatric condition in which a person imposes an illness on someone who is not really sick.

Recently, the U.S. Department of Justice announced a plea deal in which a former police chief in Florida pleaded guilty to violating the civil rights of innocent people by making false arrests “under color of law.” I think there are some striking parallels between the way these innocent victims were treated and the way that chronic pain patients and their doctors are treated today.

For several years, Chief Raimundo Atesiano and officers in the Biscayne Park police department conspired to arrest innocent people, falsely accusing them of committing burglaries and robberies.  The arrests were based on phony evidence and confessions, all because Atesiano wanted to show he was tough on crime and solving cases.  Several officers plead guilty to the conspiracy and were prepared to testify against Artesiano when he entered his plea.

Let’s examine the logic of this case:

  1. “A” is an innocent person who has committed no crime.

  2. “B” is a criminal who has burglarized homes and cars.

  3. “C” is a person in authority who blames “A” for the crimes committed by “B.”

“C” has not been able to apprehend “B” and does not have any leads on how to catch him.  However, by diverting blame to “A”, “C” can claim that he has a much higher rate of solving crimes. “C” is rewarded for this illegal behavior because the citizens of Biscayne Park believe the police department is doing a much better job than it actually is.

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Now change the focus to the scenario of Factitious Disease Imposed on Another to chronic pain patients and their doctors.

Just as the police in Biscayne Park were charged with using factitious evidence to arrest innocent people, regulators and law enforcement agencies like the CDC and DEA are using misleading information and overdose statistics to go after prescription opioids, when the real problem is those who misuse black market drugs.

Doctors who still treat chronic pain are also being targeted to end the legitimate medical distribution of opioid medication to patients. They are sanctioned with loss of license and some are even imprisoned for “overprescribing.”

Meanwhile, the real source of the public health problem – drug dealers, addicts and recreational users -- are largely going unpunished. It is these non-medical users that account for the vast majority of overdoses.

It was a civil rights violation for Atesiano and his officers to falsely blame innocent people while ignoring the real criminals. In similar fashion, equal justice demands that it should be a violation of the civil rights of pain patients and doctors to be factitiously blamed for the crimes of illicit substance use and drug trafficking.

“The right to be free from false arrests is fundamental to our Constitution and system of justice,” Acting Assistant Attorney General John Gore said when announcing the plea deal with Atesiano.

“Law enforcement officers who abuse their authority and deny any individual this right will be held accountable. As the Chief of Police, Defendant Atesiano was trusted by his community to lead their police officers by example; he has failed his community and the officers of Biscayne Park.”

The same standard applied to Atesiano should be applied equally to those who falsely accuse pain patients and doctors whose constitutional rights are being violated today.

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Richard Dobson, MD, worked as a physician in the Rochester, New York area for over 30 years, treating and rehabilitating people suffering from chronic pain, mostly as the result of work or motor vehicle accidents.  He is now retired.  

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.

Social Media’s Role in the Opioid Epidemic

By Douglas and Karen Hughes, Guest Columnists

Drug epidemics since 1900 are dynamic and our hyper-information age makes ours even more pronounced. The so-called “opioid epidemic” is contingent upon socioeconomic demand and available drug supply. To fully understand it, we must look beyond opioid medication as the sole contributing factor.

Social media could be one cause that everyone has overlooked.

Overprescribing of opioids was initially the problem and it helped fill numerous medicine cabinets. Coincidentally, this occurred at about the same time as the explosion of cell phones, texting and social media, and the resultant peer-driven social narrative.

Instantaneous information exchange brought teenagers into contact with “high school druggies” — which their pre-cell phone parents knew only as a separate social group. Contact with them was taboo. Today, however, everyone is part of the larger social narrative.

Relating the euphoria of opioid use in open forums caused adolescents, who already feel indestructible, to rebel by trying them. These impressionable youth become attracted to opioids in the same way their parents were attracted to alcohol, tobacco and marijuana. This sent teens scrambling to find a free sample in grandmother’s medicine cabinet.

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Many renowned physicians believe addictive personalities are actually formed by a genetic predisposition to addiction. All that is needed is some substance to abuse. Alcohol is usually the gateway drug for adolescents, the “first contact” for many teens. Forgotten opioids in a medicine cabinet only come later. Addicts will often say, “My drug use began with a prescription opioid.” But addiction experts know the battle was already lost if there was no intervention after “first contact” with drugs.

Society has long blamed overprescribing for the opioid epidemic, but the last three years have proven that to be a red herring. The mass closing of pill mills in 2015, the CDC opioid guideline in 2016, and the steep reduction in opioid production that followed in 2017 have only accelerated the epidemic. Forcing disabled intractable pain sufferers to suffer or self-medicate was not the solution.

The Centers for Disease Control and Prevention postulated that overprescribing caused the opioid epidemic because they only had clinical evidence for short term opioid therapy. Instead of opening a wider dialogue and seeking more evidence, the lack of critical long-term studies was used as an excuse to limit prescribing. Statistical manipulation of overdose deaths was used to confirm this errant policy.

This is emblematic of all investigations into our present drug problems. Society ran the fool’s errand that one blanket policy could be found for hundreds of diverse regional and local drug problems.

The opioid epidemic most likely emanated from widely accepted alcohol use and the social lure of opioids by adolescents. It has little to do with patients.

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Douglas and Karen Hughes live in West Virginia. Doug is a disabled coal miner and retired environmental permit writer. Karen retired after 35 years as a high school science teacher.

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.

‘Benzo Crisis’ Keeps Not Happening

By Roger Chriss, PNN Columnist

A new study published in The Journal of Clinical Psychiatry has found that the misuse and abuse of benzodiazepine is relatively rare, even though the drug is sometimes hyped as the next overdose crisis in healthcare.

Benzodiazepines – often called “benzos” -- are a class of sedative that includes Valium and Xanax. The medications are usually prescribed to treat anxiety and insomnia.

Data on over 100,000 adults in the 2015-16 National Surveys on Drug Use and Health was analyzed by researchers, who found that benzodiazepines were used by 12.5% of American adults. Of those, about 17% “misused” the drug at least once, but only 2% had what was diagnosed as a benzodiazepine use disorder.

The study found several risk factors for benzo misuse, including younger age, male gender, lower levels of education, lack of health insurance or employment, and lower income levels — factors often associated with other substance use disorders.

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The National Institute on Drug Abuse (NIDA) recently reported that most misusers obtained benzodiazepines from friends or relatives, with only about 20% receiving them from their doctor.

These findings, both the statistics and the specific risks factors and usage patterns, run counter to inflammatory media headlines such as “Xanax, Valium looking like America's next drug crisis” or “Benzodiazepines: our other prescription drug epidemic.”  

Instead, benzodiazepines are better viewed as part of an ongoing problem of drug abuse and addiction that primarily occurs outside of medical care. They are a factor in many drug overdoses, partly because of increasing rates of counterfeit Xanax and Valium being contaminated with illicit fentanyl, and because overdose rates increase when benzodiazepines are combined with opioids or alcohol.

Until recently, benzodiazepines were commonly co-prescribed with opioids to chronic pain patients, a practice that is now strongly discouraged by regulators and insurers.

There are indeed risks with benzodiazepines, including not only sedation and somnolence, but also cognitive effects and worsening of psychiatric symptoms. Moreover, chronic benzodiazepine use can lead to physiologic dependence independent of any abuse or addiction, and this dependence can make tapering off benzodiazepines difficult. Benzodiazepine withdrawal syndrome is sufficiently important to merit extensive treatment in the online guide known as the Ashton Manual.

But there are also benefits in using these drugs, even for long-term therapy. For instance, REM sleep behavior disorder is a sleep disorder in which people act out vivid, unpleasant dreams with violent arm and leg movements, often harming themselves or bed partners in the process. The benzodiazepine clonazepam (Klonopin) is the traditional choice for treatment for that. 

Stiff person syndrome is a rare neurological disorder involving intense muscle spasms in the limbs and trunk. The benzodiazepine diazepam (Valium) helps reduce those muscle spasms and stiffness.

There are also intriguing novel uses for benzodiazepines as well. Some researchers are investigating low-dose benzodiazepine therapy for people with treatment-resistant obsessive-compulsive disorder (OCD). This is not the cuddly version of OCD seen in TV shows like “Monk” but crippling dysfunction that renders a person incapable of leaving their bed for days at a stretch.

Benzodiazepines need careful consideration, but not a hyped crisis. In a reference to the opioid crisis, NIDA director Nora Volkow, MD, told Opioid Watch: “As always, science should be the driver of smart policies designed to reverse the course of this crisis.”

The same wisdom should be applied to all medications.

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Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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

A Pained Life: Torn Between Hope and Fear

By Carol Levy, PNN Columnist

Tonight, I feel like the character Pushmi-pullyu from Doctor Dolittle. You know, the animal that has a head at both ends; one head pulling to go to the right, the other head raring to go to the left.

I’m also feeling torn between hope and fear.

Although I have trigeminal neuralgia, which is not a headache, I am going to be admitted tomorrow to the headache inpatient unit at one of the city hospitals.

The treatment I will receive is a 24-hour a day IV lidocaine drip, for 4 to 5 days.

Many years ago, I had lidocaine infusions but they were for only 3 to 4 hours each time. I tried it a few times, a few weeks apart, but there was never any benefit. On the upside, there were also no side effects.

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As I read the information online about getting lidocaine for a protracted period, I am getting nervous. Hallucinations? Uh oh. I don't think so. That scares me.

I already know about the potential heart risks. The doctor told me I will have to be tethered to a heart monitor the whole time as a precaution. A sudden drop or increase in blood pressure, unconsciousness and even seizures are possible.

I did not know about the potential for deep vein blood clots until I read the information the clinic sent me. I will have to wear anti-clot stockings the whole time.

There is a list of other “moderate” and “mild” side effects: a metallic taste, tinnitus (ringing in the ears), lightheadedness, agitation, drowsiness, problems focusing, slurred speech, and numbness of the mouth and tongue.

The more serious side effects worry me. Nothing happened when I tried lidocaine the other times, but maybe having it 24 hours a day for a few days in a row vs. 3 to 4 hours every few days makes a difference.

That’s where the Pushmi-pullyu comes from. I do not know if I want to do this.

This will be the first time in the last 13 hospitalizations where I will not be going in for brain surgery to treat my trigeminal neuralgia. I have to admit, there is probably an unconscious aspect of feeling as though I am allowing myself to do one more potentially really dangerous procedure, like another surgery, and I am putting that feeling of danger on the lidocaine.

On the other hand, the reason to go ahead is pure and simple. Bathing the nerves in anesthetic for 72 hours, maybe slightly longer, makes sense to me. The nerves will be numbed or at least calmed down. How can that not work?

My bags are packed. I'm ready to go.  So once again, hope wins out over fear.

Is that a good thing or bad? I won't know for a few days, but I wonder if instead of Pushmi-pullyu for those of us in pain, it should be Fearmi-hopeyu -- with the “hopeyu” being the stronger of the two.

(10/23/18 update: Carol reports the lidocaine infusion did relieve her pain for a while, but by the 3rd day, “I had some bad reactions that altered my reality perception, not what I would think of as hallucinatory but close cousin so we had to stop it.” Carol says she is very disappointed by the outcome, but it was “definitely worth the trying. And thank you to all who asked.”)

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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.

A Beautiful Catastrophe

By Mia Maysack, PNN Columnist

Having lived my last 18 years with chronic migraines, I have my fair share of headache and migraine "poses." Yet I must admit, they're never as glamorous as what one can find in a fashion magazine. 

There’s a trend in the world of fashion to direct photo shoots in a way that brings attention to the structure of the model’s face or to exaggerate their make-up. They often to do this by framing a model’s face as if they’re experiencing head pain.

This has become known as the “migraine pose” or “headache pose” and they recently caused quite a stir on Instagram and Twitter among those that truly endure these ailments.

“If you don’t have migraine disease please don’t use #migrainepose,” a poster warned a makeup artist who shared some of her work.

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“Wow. Talk about insensitive to true migraine sufferers. Migraines look nothing like this primped model. AWFUL,” wrote another.

“Please admit your ignorance to migraine disease and show your support by instead posting a picture for #shadesformigraine. Help teach others that diseases of any kind should not be mocked,” said another migraine sufferer.  

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I don’t look like any of these models when I have a bad migraine. Ordinarily, I may be hooked up to an IV machine due to severe dehydration or I might be kneeling to the porcelain Gods attempting to combat overwhelming nausea.

There's also light and sound sensitivity, dizziness, vision disturbances, vomiting and fatigue. I describe my pain as a continuous “brain freeze” or feeling like my head was slammed against a wall.

Here are six poses that I have when I go through various stages of defeat, despair, distress, misery, grief and agony.

My most infamous pose of all? I'm nowhere to be found because I remain barricaded in a pitch black, silent room as I pray for the strength not to lose that last shred of sanity I have left and resist the urge to put an end to all of this already.

That image isn't sexy enough to sell magazines, is it? Nevertheless, that's the reality that millions of Americans are forced to live with and there is absolutely nothing pretty about it. 

When experiencing that level of discomfort, people are debilitated and focusing on any task can be impossible. To top it off, there is often no way of knowing how long an attack may last.

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Then there's the heavy emotions, such as guilt for missing out on things or feeling as though we are a burden and letting others down. And there’s the frustration and anger of being sick and tired of being tired and sick.  

People who are not experienced with enduring this type of pain likely don't stop to consider these things. Although we wouldn't wish this lifestyle on anyone, there is a priceless value and basic human need in being validated, acknowledged and understood. We need a pose for that.  

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

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

Cutting Rx Opioid Supply Is Not Stopping Diversion

By Roger Chriss, PNN Columnist

Drug diversion is an increasingly important factor in the opioid overdose crisis. A new report from Protenus found that 18.7 million pills, valued at around $164 million, were lost due to drug diversion in the United States during the first half of 2018. This represents a vast increase over 2017, when 20.9 million pills were diverted during the entire year.

As we’ve described previously, drug diversion in the supply chain is a vast, complex and old phenomenon. And it is rapidly worsening.

According to the textbook, “Prescription Drug Diversion and Pain,” drug thefts from hospitals “have increased significantly within the past decade as street prices have climbed sharply for diverted prescription opioids and benzodiazepines.”

In other words, the steep cuts in opioid production that began in 2017 aren’t working. And Attorney General Jeff Sessions was wrong when he said, "The more a drug is diverted, the more its production should be limited." A tightening supply has actually resulted in more diversion.

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Drug diversion can be broadly divided into three categories: clinical diversion, personal diversion and industrial diversion. The first, according to Protenus, is drug diversion by healthcare workers. The second is the sale or transfer by a patient who received a legitimate prescription to a third party. And the third is everything else, from diversion by employees at manufacturing facilities to theft in distribution centers or pharmacies.

Personal diversion has gotten substantial attention in recent years. Prescription drug monitoring databases, pain agreements, and urine drug testing are all intended to help prevent such diversion.

Clinical drug diversion is a long-standing problem in healthcare that has garnered more interest recently. The bipartisan opioid bill recently passed by Congress includes a provision that allows hospice workers to destroy opioid medication that has expired or is no longer needed by a patient. The National Institutes of Health has also awarded a grant to further expand efforts to detect opioid and other drug theft in hospital systems.

Industrial diversion is less well known, but appears to be a longstanding problem. In the book “Dopesick,” journalist Beth Macy writes that as early as 2001 the DEA was investigating lax security standards at Purdue Pharma manufacturing plants after the arrest of two Purdue employees accused of trying to steal thousands of pills.

Between 2009 and 2012, over 63,000 thefts of opioids and other controlled substances were reported to the DEA. Pharmacies (66%) and hospitals (19%) accounted for the vast majority of those drug thefts.

And in 2007, an audit of CMS Medicare Part D payments identified 228,000 prescription payments with invalid prescriber identifications for Schedule II drugs.

In other words, tens of thousands of drug thefts and hundreds of thousands of fraudulent prescriptions are occurring annually, leading to millions of prescription pills entering the illegal market. This may help explain how OxyContin entered the black market so quickly and completely.

As Beth Macy writes: “The town pharmacist on the other line was incredulous: “Man, we only got it a month or two ago. And you’re telling me it’s already on the street?””

The National Association of Drug Diversion Investigators and the DEA Diversion Control Division are attempting to address industrial diversion. But available evidence suggests there is much more work needed to secure the entire prescription drug supply chain.

As the opioid overdose crisis continues to evolve toward poly-drug substance abuse, drug diversion will play an increasingly significant role in the illegal supply of prescription pharmaceuticals unless the entire supply chain is secured. This will require far more than the easy tasks of checking a prescription database or legislating pill counts. The hard part of reducing drug diversion remains to be done.

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Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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

A New Era for Genetic Medicine

By Barby Ingle, PNN Columnist

This past September, I attended several conferences for chronic pain awareness month. Most had the same speakers and the same topics, but a promising new development was discussed at one meeting: Genetic medicine as a treatment for painful diseases.

For those who are new to the concept of gene replacement therapy, this is a potential way to treat genetic diseases that would save time, pain, life and energy for anyone with a gene related health challenge.

New genetic therapies, such as gene editing and oligonucleotides, are already paving the way towards treating rare diseases. Gene therapy focuses on adding a corrected copy of a gene or directly altering a mutated gene, while oligonucleotides are synthetic molecules used to inactivate genes involved in the disease process.

I listened to leaders from patient advocacy and industry discuss the promise of these new approaches, including Bartholomew Tortella, MD, who is a leader in Global Medical Affairs at Pfizer and Pushkal Garg, MD, who is Chief Medical Officer at Alnylam Pharmaceuticals. It was interesting to me that pharmaceutical companies are on the cutting edge of gene therapies.

One of the things I learned is that genetic editing and remapping are “one and done” treatments. A gene fix can only be done once. No doubt it would be expensive, but if it works what is the price of 30 years of standard treatments to manage a condition vs. a one-time treatment that can reverse the actual underlying genetic issue?

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I have had Prometheus and Color gene testing, and know that I have some life challenges of my own built into my genes. But learning about the potential of gene therapy gave me reason for hope.

There are already genetic therapies that are approved by the FDA for blind patients. Other genetic treatments will be coming online soon. We have been making advances with mice in research studies, and translating that into human clinical trials has now begun.

Would you want to get involved in the early stages of genetic testing? Or would you rather wait until its safety and effectiveness is proven? We won’t make progress without patients who are willing to volunteer and have their genes edited first. This is something that is a little sci-fi and scary to comprehend. It takes a special person to go first in these types of situations, yet the scientists I spoke with say the trials are being closely monitored for safety and efficacy.

One major challenge is that viruses are often used in gene replacement therapy to introduce the proper genes into the body. If a patient has previously been exposed to the virus, the new gene will be attacked by the body’s immune system and the treatment won’t work. If the therapy works, the virus is now in their body and it will not be a future option as a delivery system if the gene mutation returns or is not fully corrected.

Finding that Goldilocks zone for each patient will continue to be a challenge.

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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.

Doctors Urge CDC to Clarify Rx Opioid Guideline

(Editor’s Note: Five healthcare professionals recently began circulating an open letter to the CDC asking it to make a “bold clarification” of its controversial 2016 opioid guideline.

They believe many chronic pain patients have suffered under the guideline, because it has led to widespread tapering and discontinuation of opioids. They invited other healthcare professionals to co-sign the letter. To date, well over 200 have.

To see a list of signatories, click here. If you are a healthcare professional and also wish to sign the letter, click here.)  

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Authors: Health Professionals for Patients in Pain

Any professional who cares for patients, including physicians, pharmacists, nurses, psychologists and social workers, is invited to sign on to this letter, as are any professional organizations that wish to endorse formally. 

I. In 2016, the Centers for Disease Control and Prevention, CDC, issued a Guideline for Prescribing Opioids for Chronic Pain for primary care physicians. Its laudable goals were to improve communication between clinicians and patients about the risks and benefits of opioid therapy for chronic pain, improve the safety and effectiveness of pain treatment, and reduce the risks associated with long-term opioid therapy. The Guideline reflected the work of appointed experts who achieved consensus on the matter of opioid use in chronic pain. 

Among its recommendations are that opioids should rarely be a first option for chronic pain, that clinicians must carefully weigh the risks and benefits of maintaining opioids in patients already on them, and that established or transferring patients should be offered the opportunity to re-evaluate their continued use at high dosages (i.e., > 90 MME, morphine milligram equivalents).  

In light of evidence that prescribed dose may pose risks for adverse patient events, clinicians and patients may choose to consider dose reductions, when they can be accomplished without adverse effect, and with possible benefit, according to some trial data.  

Nonetheless, it is imperative that healthcare professionals and administrators realize that the Guideline does not endorse mandated involuntary dose reduction or discontinuation, as data to support the efficacy and safety of this practice are lacking.  

II. Within a year of Guideline publication, there was evidence of widespread misapplication of some of the Guideline recommendations. Notably, many doctors and regulators incorrectly believed that the CDC established a threshold of 90 MME as a de facto daily dose limit. Soon, clinicians prescribing higher doses, pharmacists dispensing them, and patients taking them came under suspicion.  

Actions that followed included payer-imposed payment barriers, pharmacy chain demands for the medical chart, or explicit taper plans as a precondition for filling prescriptions, high-stakes metrics imposed by quality agencies, and legal or professional risks for physicians, often based on invocation of the CDC’s authority. Taken in combination, these actions have led many health care providers to perceive a significant category of vulnerable patients as institutional and professional liabilities to be contained or eliminated, rather than as people needing care.  

III. Adverse experiences for these patients are documented predominantly in anecdotal form, but they are concerning. Patients with chronic pain, who are stable and, arguably, benefiting from long-term opioids, face draconian and often rapid involuntary dose reductions. Often, alternative pain care options are not offered, not covered by insurers, or not accessible. Others are pushed to undergo addiction treatment or invasive procedures (such as spinal injections), regardless of whether clinically appropriate.  

Consequently, patients have endured not only unnecessary suffering, but some have turned to suicide or illicit substance use. Others have experienced preventable hospitalizations or medical deterioration in part because insurers, regulators and other parties have deployed the 90 MME threshold as a both a professional standard and a threshold for professional suspicion. Under such pressure, care decisions are not always based on the best interests of the patient. 

lV. Action is Required: The 2016 Guideline specifically states, “the CDC is committed to evaluating the guideline to identify the impact of the recommendations on clinician and patient outcomes, both intended and unintended, and revising the recommendations in future updates when warranted”. The CDC has a moral imperative to uphold its avowed goals and to protect patients.  

Therefore, we call upon the CDC to take action: 

1. We urge the CDC to follow through with its commitment to evaluate impact by consulting directly with a wide range of patients and caregivers, and by engaging epidemiologic experts to investigate reported suicides, increases in illicit opioid use and, to the extent possible, expressions of suicidal ideation following involuntary opioid taper or discontinuation. 

2. We urge the CDC to issue a bold clarification about the 2016 Guideline – what it says and what it does not say, particularly on the matters of opioid taper and discontinuation.  

Signatories here represent their own views, and do not purport to reflect formal positions of their employing agencies, governmental or otherwise.

For questions regarding the letter, please contact Stefan G. Kertesz, MD, Professor of Medicine at University of Alabama at Birmingham School of Medicine (skertesz@uabmc.edu).

The information in this letter 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 Needs to Report the Truth About Rx Opioids

By Michael Emelio, Guest Columnist

Initially I was going to write an article about why we desperately need our doctors to fight for us. How they may be the only ones who will be able to convince the powers-that-be to stop punishing legitimate pain patients and open their eyes to the real consequences of reducing our access to pain medication.

While I believe doctors speaking out would help immensely, I fear that few will step up and make a difference. After talking to half a dozen pain management doctors this year, I believe that they have been so programmed by the anti-opioid propaganda that many believe they're doing the right thing and fail to realize the true extent of the suffering they have caused.

Tragically, it may only be when they've lost enough patients to street drugs or suicide that they’ll wake up.

We obviously don't have enough doctors fighting for us. Writing our congressmen and senators hasn't helped either. To make matters even worse, the mainstream media have failed miserably to report our side of the war on opioids. Most of the time they bombard the public with propaganda from the CDC and DEA.

But right now, the media may be our best and only chance to make people understand what happens when you take prescription opioids away from patients who really need them.

That is why we need to direct our protests at the media. Let’s start demonstrating at the front doors of newspapers, radio and TV stations, and other news outlets. Flood them with phone calls and letters to the editor until they can no longer ignore OUR side of the story.

We need to utilize the biggest tool we have and that is the media!

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It's imperative that we get the truth out, until enough people are finally outraged to put their foot down. The whole country needs to know that the war on opioids is not only failing to reduce the number of overdoses but is making matters much worse. Millions of patients are suffering needlessly after having opioids taken away from them, leaving them no alternative for effective pain management other than street drugs or suicide.

That is what needs to be reported by the media.  And the only way these issues will ever get enough air time is if we put enough pressure on the media to do it.

What the hell is going on in our country? We're supposed to be the greatest country in the world, yet our government is directly causing millions to suffer needlessly. What is it going to take before the CDC and DEA realize they've gone too far?

Just how many easily avoidable deaths will it take to put an end this madness? Why is the mainstream media perpetuating this disaster by constantly reporting all the false facts rather than the truth? How many need to suffer and die before the truth is told?

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Michael Emelio lives in Florida. He suffers from degenerative disc disease, scoliosis and fibromyalgia.

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.

When Home Feels More Like a Prison

By Mia Maysack, PNN Columnist

Recently, my primary care doctor recommended I go in for a “sleep study,” which is exactly what it sounds like. My immediate thought was, “I've been doing my own sleep study for 28 years, want to know what I’ve learned?”

But jumping through society's hoops is an art form that I've somewhat mastered, so let's flash forward to the appointment that took place weeks later.  

I’m in a closet sized room with a sleep study “fellow” -- meaning I'm going to sit there and essentially explain my whole life story to him, and then I get to do it again with the actual doctor.  

He's asking me about sleep, naturally, so I tell him there’s no sense of regularity as I am fortunate if I get a couple solid hours of sleep a night. I ordinarily never reach my REM cycle, so eventually my body will crash and burn -- resulting in too much sleep that's damaging to my natural rhythm and makes the existing problem worse. 

Chronic pain impacts every aspect of my life, but they have no interest in discussing that because this appointment is only about sleep. How is it productive to disregard the biggest motivational factor in the situation at hand?  Guess I'll have to go to medical school to find out.

Then comes the medication talk, which has actually gotten easier over the years as I've stopped playing the role of a pharmaceutical guinea pig -- hence there being less to discuss. All of the drugs he recommends I have already tried, and I am now only interested in holistic approaches.

This is when he brings up anxiety and depression, almost as ammunition against me -- or so it felt like. Do I consider myself anxious or depressed? How long have I been afflicted?  Then comes a whole new list of pill suggestions that are thought to help anxiety and depression. I feel like we are both wasting our time.

pain art courtesy of painexhibit.org

pain art courtesy of painexhibit.org

"Anyone would feel that way if they endured never-ending, agonizing pain,” I told him.   

He looks at my paperwork, sees that I've selected “homemaker” under employment and proceeds to say, “You don't work, so..."

This remark was declared in such a way as to suggest it is no wonder that I'm not tired, because I don't do anything all day.

"I actually work quite a bit," I objected and proceeded to list my duties.

I maintain the house while my lovely fiancé works. I cook, clean and do laundry. I have ownership over taking care of our doggy daughter, Aiva. I facilitate monthly group meetings, write newsletters, moderate online forums and volunteer countless hours. I also attempt to maintain a bite-size version of a social life and strive to make self-care a priority. 

Oh! And I live within a body that mostly feels as though it is deconstructing from the inside out.

He reported that naps are detrimental to our health, which is a comment I shrugged off because, clearly, he's never been chronically ill and has yet to be a parent.

People may peer into the window of my life and think to themselves how nice it must be to sit around at home all day while a man goes out to earn his keep as well as mine. But I've got some quick facts for anyone that would spend even a split moment envying the life of a chronic pain warrior.

I've been in the process of pursuing disability for just shy of four years -- which I began a decade after I really should have. But I was so hard on myself and likely a bit too proud, for this isn't at all the life I had envisioned. But I am grateful and committed to making the best out of it while demanding my ailments be validated.   

Prior to getting engaged, the place we live in was paid for in full by me. Even after becoming unwell to the point of stepping away from full-time work, I still continued to attempt working part-time outside of the home. But I was digging myself a hole in the ground, which led to the need of accepting even that was not in the cards, which led to the emergency need to access my retirement funds. 

I do not share this information for attention or pity but merely to drive the point home as to how crippling all of this can be on a person, especially over a long period of time. For some of us, home is less a place of tranquility and feels more like a prison.

Yesterday, I cleaned and organized our home, got laundry done, ran some errands and cooked a delicious healthy dinner. Today, I stayed in bed until 10:45 am, didn't leave the house, have difficultly navigating the stairs, hope to vacuum later if able, and have pain in every extremity. 

These are things that this fellow, as well as the doctor that graced us with his 30 second presence, didn’t seem to care about, let alone have the time to begin to understand. 

I'm thankful that I can do the things I can when I am able. It's imperative we take full advantage of the gifts we have while still able to do so, as we never know what tomorrow will bring. All it would take is a slight change in circumstance to make what may feel like the worst even worse.

Living as Spoonies, we are much too quick to accept being dehumanized. We even do it at times to ourselves.  May we all unapologetically let go of the weight of feeling we must somehow justify, explain, excuse or defend ourselves. Do what you can, where you are, with what you have, and know that is it both worthwhile and good enough.  

Benefits from my sleep study appointment include the mention of melatonin supplements, something I've tried in the past and will consider trying again, as well as “light therapy” to promote a regular internal clock which I plan to follow up on.

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Mia Maysack resides in Wisconsin.  She lives with chronic migraine, cluster headaches and fibromyalgia.  Mia is the founder of a wellness and life coaching practice for the chronically ill, and was recently honored by the U.S. Pain Foundation as its “Pain Warrior of the Month.”

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.

Lessons from ‘Prescription Drug Diversion and Pain’

By Roger Chriss, PNN Columnist

The new book "Prescription Drug Diversion and Pain" is a textbook treatment of pain management and drug policy amid the opioid crisis. Written and edited by experts, the book is a scholarly, rigorous and evenhanded examination of the benefits and burdens of opioid pain medication.

Each chapter is written by specialists who address a particular aspect of the opioid crisis, with extensive footnotes justifying every statistic and claim. Much of that data, however, is admittedly flawed.

“As we show in this book, essential data about opioid abuse, morbidity, and mortality are lacking and what little data we have are derived from flawed and obsolete government databases,” the authors note in the preface.

“Yet, these resources are relied upon for public policy development, resource allocation, and lawmaking. In the absence of sound data, ingrained cultural feelings about addiction can become a powerful driver of attitudes, even among pain specialists who, despite their professional training and experience, may be influenced by such bias in their prescribing practices.”

The first chapters look at the history, regulation and monitoring of opioid prescriptions, and attempts to defuse the bias often associated with them:

"These medications are neither good nor bad absent context, despite the public tendency to oversimplify their use and mischaracterize their utility."

The origins of the opioid crisis are given due consideration. Rising rates of opioid prescribing are recognized as one factor, but drug diversion in the supply chain is also acknowledged:

“There is evidence that thefts from hospital and pharmacy drug supplies, as well as in-transit thefts from manufacturers and distributors, may also be a significant source of diverted opioids.”

Close attention is given to the issue of overprescribing and doctors who are “careless, corrupt, and compromised by impairment.”

But the book is also critical of the theory – expounded by the CDC opioid guideline – that reducing the number of prescriptions will help solve the opioid crisis:

“One might expect… that a decline in sales would produce a corresponding decline in overdose deaths. This has not occurred, casting doubt on the CDC’s original hypothesis. Several explanations are possible for this and may involve the recent increase in the use of street opioids like heroin and fentanyl analogs.

“Government databases for tracking nonmedical drug use and related health consequences are obsolete and lack the sensitivity to show which drugs, by chemical name and product formulation, licit or illicit, are responsible for the increasing overdose deaths.”

Later chapters explore opioid prescribing in detail and echo many of the themes of the CDC guideline:

“Not every patient who complains of pain needs an opioid or is a candidate for opioid therapy. Opioids should be prescribed only when the benefit outweighs the risks. Functional improvement should be a primary goal, along with improved sleep and mood, regardless of the therapy used.”

Indeed, the book goes to great lengths to discuss the risks associated with long-term opioid therapy, not just addiction but endocrinopathy, sedation, delirium, and bone loss. Many alternatives, from non-steroidal anti-inflammatory drugs and tricyclic antidepressants to cognitive-behavioral therapy (CBT) and acceptance and commitment therapy (ACT) are also described in detail.

The book laments the loss of interdisciplinary pain management programs, starting in the 1980s. These programs provided “a safer and clinically more effective alternative to opioids [and] have also been empirically associated with reducing patients’ reliance on opioids.” But the programs were costly to insurers and not profitable for medical facilities. Their disappearance “should be considered a contributory factor in the crisis of diversion and abuse and the associated destruction of lives.”

The book challenges areas of pain management and prescribing practice. A whole chapter is given over to the subject of urine drug testing, which is described as “an important element of an overall opioid-compliance program.” Because misuse of prescription drugs and use of illicit drugs is not uncommon among chronic pain patients, such monitoring is recommended. But the book cautions: “Other clinical indicators are needed before determining if a patient is nonadherent.”

The book concludes with its key idea, that there are no easy solutions:

"Given the complexity of the practice of pain management, the ‘opioid crisis’ cannot be solved, nor can conditions for pain patients be improved, using only simple and direct approaches: one medication, one regulatory policy, one law, or one injection will not be the answer for our chronic pain patients.

The government’s crackdown on drug companies and others in the pharmaceutical industry has had a negligible effect on reducing the morbidity and mortality resulting from the abuse of opioids.”

In other words, the opioid crisis and pain management are sufficiently complex that simple approaches are bound to fail. We need smart approaches. This book does an excellent job outlining the current state of knowledge to inform such approaches.

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Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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

The New Cruelty Rolls On

(Editor’s note: Rob Hale is a 52-year old Missouri man who lives with late-stage Ankylosing Spondylitis, a degenerative and incurable form of arthritis. We’ve written before about Rob and his difficulty in getting opioid pain medication – what he calls the “New Cruelty.”)

By Rob Hale, Guest Columnist

I’m here to talk about what happens when someone like me, who already is criminally undermedicated, gets seriously injured and must deal with the new procedures for treating chronic pain patients.

On August 16th of this year, I slipped and fell, breaking my neck.  I know, I know – bad idea. 

When I was brought into the hospital, they immediately hit me up with a dose of Narcan (naloxone), a drug used to reverse opioid overdoses. Narcan takes all the opiates out of your system in about 20 minutes, so you can feel every last iota of pain in your body. You also get to go through about a week’s worth of withdrawal pains in just under a half hour. Narcan is now standard operating procedure for any patient who comes into the ER with any form of opiate/opioid in his or her system. 

Anyway, back to the fun.  I was drifting in and out of consciousness due to the pain, while they took x-rays and CT scans of my neck. It turned out that I had a minor fracture, so they decided it was time to slit me from my skull to my mid back and put two, 12-inch titanium rods and 13 fittings and screws into my spine. 

I vaguely remember agreeing to this and putting my ‘X’ on some sheet of paper saying they could do it.  One thing I do remember clearly is I made damned sure that once the surgery was over and I was sent home, that I was going to get at least 6 and probably 12 days’ worth of pain medication.  I was assured of this not only by the neurosurgeon, but by all the interns and nurses who were attending me. 

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I only spent 4 days in the ICU recovering from this nightmare of a surgery when they told me I was ready to go home!  I was shocked since they had just removed the wound drains that very day.  

But I really did want to get home and see my dog and my family, so I thought, “Okay, they must know what they’re doing, right?” 

I want you to guess what happens next, kids!

You guessed it – they were finishing up my discharge papers and I asked about my scripts.  They said that because I already had a pain management doctor, that is was up to him to provide me with the meds that I would need to recover from the surgery.  I explained, just as I had before the surgery, that my pain doctor was not going to be able to see me for several weeks, because his primary clinic is three hours away in Park City, Kansas and he is only in Kansas City one week out of the month.  Of course, I called him and begged for help, but to no avail. 

While I was recovering in the hospital, I was getting long-acting morphine 3x daily, plus immediate release oxycodone every 4 hours.  When I was released from the hospital, they gave me oxycodone to take every 6 hours, and no long acting morphine at all. 

Within 3 or 4 days, I lost the ability to use my right leg at all.  Having no other medication, nor any other recourse, I decided to use some of the methadone that I had left over from my last palliative care doctor. Unfortunately, it was about 10 years old.  But what was I to do?  It was that or hit the streets and try to get some illegal medication, which might have killed me since that crap is often loaded with illicit fentanyl. 

I was very careful to keep track of what I was taking, but I am guessing the methadone had gone bad, because I had a serious reaction to it and my dad called in the paramedics again. 

So, it was back to the hospital for me! Four days in ICU and 5 days in a semi-private room with a roommate who had pneumococcal pneumonia and a toilet that didn’t work, before I was  transferred to a nice, private room.  Only 2 days there, before they sent me over to a physical therapy facility across the street, where they tried to get my leg to work. 

All the doctors there were totally on board with the New Cruelty.  One actually told me that people who took more than 90 MME (morphine milligram equivalent) were at a much higher risk of death! It’s amazing to me how quickly they have disseminated this propaganda, and how completely the new generation of doctors have accepted it as the truth! 

This nonsense has gone on for years and I am becoming more and more despondent with this opioidphobic world. If you know me, you know that I live with chronic pain.  Not just any old pain, mind you – it’s really bad.  I have Ankylosing Spondylitis in its most advanced form, which more or less means that my spine, neck and sacroiliac are completely fused.  This has caused me daily intractable pain. I’m talking about pain that would drop the average person to his or her knees, praying to God to take their lives away just so the pain would stop. 

Adequate Care Phase

I am not attempting to elicit sympathy. It does nothing to ease the unending, merciless, wicked, 9 out of 10 pain that I live with day in and day out, 7 days a week, and 365 days a damned year. 

For many years, my pain was well controlled with morphine and hydromorphone. I was taking over 1,000 MME a day and never felt better in my life.  During this time, which I like to call my “adequate care phase,” which lasted almost 12 years, I never misused my medications and even went so far as to keep a journal listing every single pill that I took. My palliative care doctor can back me up on this. He was very surprised yet pleased to see how carefully I was using these drugs and how much respect I had for them.  I knew they were potentially deadly and dangerous, but while I was taking them – exactly as prescribed – I was every bit as lucid and well-spoken as I am right now. 

You see, when you have extreme amounts of pain, opioids go straight to the pain – they do NOT cause any type of high or euphoria.  I was able to participate in family functions, help around the house and assist my aging parents -- in short, to live a semi-normal, quasi-productive life.  I even opened my own little guitar shop out of my house, to make a little money to supplement my rather meager social security disability income. 

Then came the New Cruelty, in the form of a supposedly voluntary set of opioid guidelines from the CDC — or as I like to call them, the medical Gestapo.  According to the CDC, I was at high risk of overdose for over a decade because I was taking over 90 MME.

We are now at the mercy of a medical industrial complex that – in collusion with insurance companies and psycho-sociopaths in Congress – have created a fear-based campaign that they have dubbed the “opioid epidemic’ or “opiate crisis.” I firmly believe that chronic pain patients are being targeted for death by this campaign, either by our own hands or by medical complications that result from being woefully undermedicated. 

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Rob Hale lives in Kansas City, MO. He was diagnosed with Ankylosing Spondylitis at the age of 27.

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.

I Was Fired for Being in Pain

By Deann Goudy, Guest Columnist

I'll start with all of my health issues, every one of which causes pain.  

I was first diagnosed with sciatic nerve pain, followed by scoliosis, degenerative disc disease, spinal stenosis, arthritis, and bone spurs in my neck. I also have ulcerative colitis, irritable bowel syndrome, and ulcers in my intestines, stomach and all the way up to my throat.  

The ulcers were caused by taking over-the-counter pain medication.  I was in constant pain at work and took bottles and bottles of Aleve and Advil. Sometimes I'd mix ibuprofen with Tylenol, hoping it would help the inflammation and pain.  Nothing helped.

I never realized anything over-the-counter could cause such damage to my stomach, until one day I fell out of my chair while at my desk, bleeding.  The next day I was in emergency surgery to get the bleeding to stop.  I was given orders to only take Tylenol.  I knew that would not help, so I went to a pain doctor to find out why I hurt so much. 

That is when they found my back and neck problems. Degenerative disc disease does not get better over time, only worse. 

I went through several steroid shots, physical therapy, and was put on hydrocodone.  The shots made matters worse. The pain management doctor would only give me shots in my cervical area and refused to help with my lower back.  Later I found out you are only supposed to have no more than 3 of those shots a year and if they do not work you should consider other options.  I was given 7 shots in one year. 

The shots accelerated the degenerative disc disease in my neck.  That is when the bone spurs grew and started pinching off the nerves in my neck, which were already being crushed by the spinal stenosis. 

DEANN GOUDY

DEANN GOUDY

I was put on every medication they could think of, including Lyrica, gabapentin, tramadol and Suboxone. I wanted to die due to the side effects, mostly from the gabapentin and Lyrica.  I passed out, saw colors, and felt dizzy and disorientated.  The tramadol gave me so much anxiety I thought my heart was going to burst.  I was shaking uncontrollably. 

I quit taking all of them and found another pain management doctor, who told me he would do one shot in my lumbar. If that did not work, then I would have to rely on pain medication. I went through with the shot and, as hopeful as I was, it still did not take. 

I was referred to an internal medicine doctor who actually listened to me.  He got me on a regimen of half the medications, mostly taking only hydrocodone and oxycodone for severe pain.  This finally gave me my life back.  I was able to go back to work.  I was no longer immobilized and struck down by pain so hard core I would lose control of my bladder. 

I was not completely out of pain, but it was tolerable, and I was finally able to have some quality of life. 

Then a pharmacist decided to cut my opioid medication in half without permission from me or my doctor. It took 3 months to fix this and find a pharmacy to fill my medication. I couldn’t control the pain and was recently fired for taking too many breaks while at work. All I was doing was getting up to walk and stretch to relieve some pain and pressure, and to calm the spasms down.

Now I’m being forced onto disability. It’s hard enough for a chronic pain patient to get a job without being discriminated against. 

I am not addicted or feel withdrawals or cravings, I am just in intense pain.  If my medications are taken away, I will not resort to the streets.  I will ask everyone in my family to not be selfish and let me go.  All I am doing is breathing and being a burden. I'd rather be dead and ask God to understand and forgive me. 

Our government has decided to play God and take away all our rights and pick on the weak and innocent.  They’ve demonized and tortured us.  For the first time in my life, I'm ashamed of the country I live in.  The corruption is everywhere, the money-making schemes, the fake opioid crisis, the lies and deception. 

I say get the facts straight before you make life altering decisions for thousands of chronic pain patients. Do a better study of where the problems are, not fake your data to make yourself look good and cash in on our lives.

Just remember lawmakers, you are only one accident away from this happening to you too.  What will you do when you’ve gotten rid of the medication that could save you?  Or do the same laws even apply to you?

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Deann Goudy 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.

Are You Skinny Fat?

By Barby Ingle, PNN Columnist

I recently was visiting my primary care doctor for my wellness physical -- something I haven’t done in many years. This was a comprehensive exam that took a look at all of my physical symptoms, including body fat to bone density ratio.

I have heard since childhood that a bit of prevention can add years to your life. A healthy lifestyle is not something many of us are taught, but it is something we can start at any age and gain benefits from. Take heart disease, for example. It’s the number one killer in the United States and accounts for one in every four deaths. Many chronic pain patients have cardiovascular, balance, breathing and body fat challenges. Treating these health problems is difficult, so preventing them from starting is key.

When was your last wellness physical? Did you talk about prevention?

My medical records from a one-hour examination with a nurse and two hours with the doctor were 18 pages long. I was checked for routine things such as my vitals, medication use and past medical history. Risk factors were also discussed such as alcohol and smoking. I do neither and never plan to anyway.

My doctor devotes more time to each patient so that we can go beyond normal primary care practices. He and his staff perform a comprehensive advanced health screening and diagnostic tests that have been shown to help detect issues earlier. The results help give a clearer view of your overall health.

We went over a lot as I have been a patient of his for about 15 years now. He is my lead treatment provider and knows my case better than all of my other doctors.

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One of the most interesting things was him saying I look totally normal and healthy. Yes, that is called invisible illness. But after looking at all of my blood and diagnostic test results, he got deep into his analysis. He said I am “skinny fat.”

What is skinny fat you ask? It’s a totally unscientific term used to describe a person who appears to be a healthy weight, but actually has a high body fat to muscle ratio. For example, my arms are stronger and have more muscle mass than my legs.

My entire life I was eating poor. I was the one eating mac ‘n’ cheese, cookies, cake and soda. I was an athlete and had hypoglycemia until I was 29. Then I developed central pain syndrome (also known as full body Reflex Sympathetic Dystrophy) and went from being extremely active and working out daily to bedbound or in a wheelchair for almost 7 years. I have been limited in workouts and physical activities for the past 8 years, going in and out of remissive states.

It is important to remember that the scale doesn’t paint the whole picture as to how healthy you are. You can be obese and look totally healthy or have great muscle tone and thicker bones. Looks can be deceiving. Some studies suggest that up to 35 percent of people with obesity may be metabolically healthy.

The number on the scale doesn’t paint the whole picture of someone’s health. Being skinny fat is a prime example. In my case, I am metabolically obese, yet in a normal weight range. Although I am not diabetic or even pre-diabetic, my doctor said I still need to pay attention to being skinny fat and make changes. I need to get my fat levels down and my muscle level up.

Preventative measures like these need to be added to my lifestyle, despite having chronic pain. Not doing so can lead to health problems like insulin resistance, high blood pressure, high cholesterol and an increased risk for blood clotting. This study gives some great information on the risks of being skinny fat from a medical standpoint.

By the time I left my doctor’s office, I had a detailed action plan.

My plan is to get my muscle mass up and my fat mass down over the next 3 months. I don’t know if this is wishful thinking being chronically ill, but I am going to give it my best shot. The tips my doctor gave include moving more with cardio walks, stationary bike exercises, and lifting two-pound weights -- which should be enough to tone my muscles without triggering a pain flare. He also advised me to eat more protein and stop eating all of the processed food that filled my diet.

My doctor will redo the testing in 3 months and let me know what other changes I need to make or if this was enough.

When you see another patient who is super skinny, know that they may be struggling with their body composition as well, and they may actually not be as healthy as you are. I have struggled with being too low weight in the past.  Now I am in a normal range, yet too fat!

It seems like we all have something to work on. I wish that as a child I was taught these important preventative and life-prolonging lessons.

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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: Tyranny of the White Coat

By Carol Levy, PNN Columnist

I saw a new neurologist this past week. He was a lovely man. Unfortunately, I was referred to him in error. He does not treat trigeminal neuralgia, so this was the first and last time I would see him.

That saddened me. Not only because I really took a liking to him, but because he did some things I have seen far too rarely.

He started our appointment by saying, “I have read your history.” Not only that, he had tried to contact my neurosurgeon to find out why I had been referred to him, since he did not treat facial pain. He had gone to the trouble to prepare for the meeting despite knowing he was not the right specialist for me.

Like many doctors, he dictated his notes into a recording device while we were together. From what he said, it was obvious he had read my history and recalled much of it. I was amazed when he would stop and correct himself.

Even more surprising was when he got something wrong and I shook my finger to signal “No.” Immediately he stopped and asked, “What did I get wrong?”

I’d explain the pain was on the left side of my face, not the right, and in the upper part, not lower. He listened and corrected his notes.

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Usually most of the docs who do this dictation, ostensibly to make sure they get the information right and have me there to confirm, do not care if what they say is wrong. In fact, my main experience has been docs who say patently wrong information.

For them, I would hold up my finger, shake my head and mouth the words, “That’s wrong.” Invariably, the doctors would shake their heads and silence me with a “Shhhh.” No effort is made to correct or even ask what is wrong with their notes. As a result, the wrong information stays on the record and subsequent docs then approach us with preconceived ideas about things that are not true.

The last pain management doctor I saw decided I had had a history of major depression. He did not ask if I had a psychiatric history or diagnosis but decided this on his own. He did not dictate his notes while I was with him, but I saw it when I went onto the online portal where after-visit summaries are posted.

I thought he must have gotten confused. When he asked me about my family history, I had mentioned a relative who had a diagnosis of depression.

At the next appointment, I asked him to change the record. ““That is not my history,” I said. “You must have been thinking about my relative.” He seemed to agree -- and yet that “history” remains on my official record.

Is it an arrogance that too many docs develop? Is it a hardness, where the patient is almost irrelevant to the entire process? Is it because the patient is not a “professional,” so they can't be trusted even when it is their own history they are giving?

I don't know. I do know that it’s a sad state of affairs when you take a liking to a doctor because they took the rare action of actually listening, hearing and respecting you.

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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.

Why I Am So Ashamed of Canada

By Ann Marie Gaudon, PNN Columnist

As far as countries go, I have lived almost the entirety of my life believing that Canada had a fairly good track record for upholding human rights. Of course, we’re far from perfect, but when I looked around the world I still felt grateful for where I am.

I no longer feel this way. Now I feel a deep shame for Canada and I believe that history will show this era with a rather large black mark etched in its pages.

Unfortunately for all of us, politicians and bureaucrats do not have a great history of getting things right. And they’ve really blown it this time.

We’ve got a real problem. Canadians are dying like never before from a tainted illicit drug supply. These political players never cared about people overdosing until they began dying en masse.

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The government’s answer in the past was to round them up and put them in jail. Yes, punish them for being impoverished, mentally ill, homeless, and victims of sexual and physical violence. Punish them because they were neglected, abused or abandoned and consequently suffer from addictions trying to cope with their miserable lot in life.

Now they are dying from drug overdoses – far too many and far too quickly. The government’s answer: Let’s lock up and throw away the key to the prescription medication cabinet!

Instead of solving one deadly drug problem, now we have two.

Logic would dictate to policy makers that to solve the overdose problem, one should go straight to other countries such as Portugal that have done a good job of saving lives. Yet what have they done in Canada? They’ve jumped on the frenzied, anti-opiate, lunatic fringe bandwagon. Instead of listening to progressive professionals and those suffering from addiction, they are hell-bent on blaming pain patients and their medications.

Has this helped? Well, as prescriptions continue to decrease, and pain patients suffer more and sometimes die, overdose deaths continue to soar.

I invite you to join me in my personal attempt to spread awareness about the worsening plight of the severely pained in Canada. It isn’t a pretty story, but it’s one that has to be told.

I’ve created four informative videos and uploaded them to YouTube. My personal story is the first video and also includes the state of chronic pain in Canada in 2018. In the second video, I interview my friend Beth who had unethical medical treatment forced upon her. It is incredulous what the Ontario College of Physicians and Surgeons (CPSO) has done to Beth – and they accept responsibility for nothing at all.

Beth tells her story below:

Next up is Dan, who has been a chronic pain patient stable on pain medications for over 20 years. He is no longer stable. The CPSO terrified his doctor, who in turn forced Dan to decrease his medications. Dan is not doing well as a result.

Finally, Paul explains how he organized a town hall meeting between framers of the 2017 Canadian opioid guidelines, a representative of the CPSO and a few others. These folks were to be “silent attendees” and listen to severe chronic pain patients tell them how enforcing the new guidelines has negatively impacted their health and lives. The whole idea was admirable, but Paul ultimately learned the hard way that the lives of severely pained patients don’t seem to matter at all to the people who decided these issues for us.

So now you have an idea of why I am so ashamed of Canada. I would love it if you would listen to these stories and spread them far and wide. People need to know what’s going on here. I would also appreciate your comments. Let’s stick together, there’s always strength in numbers.

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Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

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