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.