How the Opioid Crisis Has Changed

By Roger Chriss, Columnist

The CDC recently released its first annual “Surveillance Report of Drug-Related Risks and Outcomes,” a lengthy and data filled study that documents the changing nature of the opioid crisis. Much attention is paid to declining rates of opioid prescribing, rising rates of heroin and fentanyl overdoses, and the increasing number of multiple or “poly-drug” overdoses.

According to the report, efforts to rein in opioid prescribing have succeeded in ways that are often not recognized:

• Opioid prescriptions fell 4.9% each year between 2012 and 2016.
• High-dose opioid prescriptions (above 90 MME) dropped 9.3% annually from 2009 to 2016.
• In 2016, there were 66.5 opioid prescriptions per 100 persons, down from 72.4 opioid prescriptions per 100 persons in 2006.

Much of this decline came before the release of the 2016 CDC opioid guidelines and subsequent efforts by state governments, health insurers, and drug store chains like CVS to reduce prescribing.

In 2016, opioid prescribing in the U.S. was at about three times the level of 1999 -- still high, but  down from the peak of four times the 1999 level. At the current rate of reduction, we will reach twice the 1999 level sometime next year and be back to 1999 levels by early 2021 at the latest. Ongoing moves by regulators and insurers to reduce opioid prescribing may accelerate this process.

Clearly, as the report states and many pain patients already know, healthcare providers are “becoming more cautious in their opioid prescribing practices.”

Tragically, similar success is lacking in the overdose crisis.

In 2015, the most recent year covered in the report, 52,404 people died of drug overdoses. About 63% of those deaths involved an illicit or prescription opioid, with heroin being the most common cause in 12,989 deaths. The other 37% of deaths involved non-opioids such as cocaine and methamphetamines. Over 5,000 deaths were identified as suicides and nearly 3,000 were identified as having undetermined intent.

The CDC report estimates that about 2 million people are addicted to prescription opioids and nearly 600,000 Americans are addicted to heroin. These numbers have remained largely unchanged since 2012, meaning that there has been little if any progress in preventing opioid addiction.

Limits on opioid prescribing have also not resulted in fewer deaths. Overdose fatalities are still rising sharply, mostly because of heroin and illicit fentanyl.

"Prescription opioid pain relievers were formerly driving the crisis, but by 2015 they shared equal measure with heroin, synthetic opioids other than methadone (mostly illicit fentanyl), and – increasingly-- cocaine and methamphetamines,” the report found.

In the two years since 2015, the final year for overdose data in the report, drug deaths have spiked higher. In 2016 there were 63,632 fatal overdoses and the early analysis for 2017 suggests the numbers are even worse. The handful of states that are seeing a decrease in drug deaths are attributing it largely to the increased use of naloxone to revive overdose victims.

Also alarming is that in 2015, around 33 percent of heroin users had initiated use with that drug rather than with opioid analgesics or some other substance. And heroin, illicit fentanyl, and virtually every other drug are now readily available on darknet markets.

At present, overdose rates are rising for virtually every major class of drug. The only class of drug that has seen a drop is prescription opioids.  

The opioid crisis is real, though as the CDC report shows, it is fast becoming an overdose crisis driven primarily by more potent and risky street drugs. Opioid medication is just one of many substances involved and its role is decreasing.

The CDC report concludes ominously: “Additional measures are now urgently needed to address a diverse and evolving array of drug types.”

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.

4 P’s That Can Help Lower Pain Levels

By Barby Ingle, Columnist

Having lived with chronic pain for 21 years -- with diagnoses such as arthritis, TMJ disorder, endometriosis, hypothyroid, ischemia, seizures, reflex sympathetic dystrophy (RSD) and thoracic outlet syndrome -- I know what life with a chronic condition is like.

I have tried many different treatment options, yet still have not found “the cure.” That doesn’t mean I have stopped looking. As part of my continuing alphabet series on alternative pain treatments, this month I am covering 4 P’s of pain management: physical therapy, pain medications, prolotherapy and psychology. 

Physical Therapy

Also known as PT and physiotherapy, physical therapy uses movement through manual therapy, exercise, and electro-therapy to improve range of motion, mobility, function and daily living.

Used incorrectly, physical therapy can be harmful. It is very important to get a physical therapist that understands your health condition, knows when to push you and when to hold you back, and can teach you exercises you can learn to do independently.

A good physical therapist will do research on your condition and help educate you about your body’s limits and potential for improvement. They will also be in regular contact with your doctor and other healthcare providers.

Due to insurance practices in the United States, the number of physical therapy sessions is often limited and rarely lasts throughout a chronic illness. But many of the techniques can be continued at home on the patient’s time, once they learn how to do them properly.

When I first started physical therapy, I did all of the wrong exercises because my therapist didn’t know or understand the conditions I have. My mentality at the time was no pain no gain, so we both over-worked me. It made things far worse than if had I done nothing in the first place.

Once I was with the right physical therapist, I began to see improvements in my daily function. We learned together it wasn’t about pushing my limits, but more about working as a team to find ways around the physical limitations I had.

Pain Medication

When the average person hears the words “pain medication” they often think about opioids. But there are a many different types of pain medication available, including medical cannabis, NSAIDs, benzodiazepines, tricyclic antidepressants, alcohol, kratom, cox-2 inhibitors, and muscle relaxers.

Based on my speaking with medical professionals and researchers, I believe that all options -- including opioids -- should be on the table when a provider is deciding what is best for the patient.

I have heard from thousands of patients (of the millions who use opioids daily) who swear by two things. First, they have no other treatment option due to access or cost.  Second, there is no other treatment option that works as well as opioid medication.

I know that the evidence is weak on the long-term use of opioids. Every test, assessment and research study can be torn apart by opioid critics. But for me, it all comes down to this: If I have something that helps me function better and live a better quality of life, I want to have access to it. I have lost many friends to suicide due to uncontrolled pain and a few to addiction.

Opioids are not typically the first line of treatment. More and more, due to insurance company policies, guidelines and legislation, pain patients will get acetaminophen or NSAIDs, or be given nerve blocks, spinal injections or some other invasive procedure. Opioid medications are far less prescribed than they used to be. And many patients can’t get them at all.

Doctors are now being taught in medical school that what they prescribe should be determined by the type of pain someone has. For neuropathic pain, they are taught that traditional analgesics are less effective. Therefore, many providers will prescribe tricyclic antidepressants and anticonvulsants for nerve pain. And they will use topical NSAIDs creams and ointments for muscle sprains and overuse injuries.

Prolotherapy

Prolotherapy is an injection-based treatment used for pain conditions that involve musculoskeletal disorders, such as low back pain, tendonitis and knee osteoarthritis.

The injection is typically administered where joints and tendons connect to bone.  In theory, the injection creates an irritation to the injured area that helps stimulate healing. This technique that has been practiced since Roman times, when they used hot needles on gladiator injuries to promote healing.

Patients may report mild pain and irritation at the injection site, which usually goes away within 72 hours. They also may report numbness or minor bleeding right after the injection. There have been cases of disc and spinal injuries reported.

I used to hear a lot about prolotherapy 10-15 years ago, but I hear less and less about it now, as it is not typically used to treat nerve diseases. It is also not well reimbursed by insurance companies and Medicare has decided not to cover prolotherapy injections for low back pain at all.

Psychology

Psychology is used to help prevent the reliving of psychological distress or dysfunction, and to promote positive thoughts, well-being and personal skills. Psychology should not to be confused with psychiatry, which is the medical specialty devoted to the diagnosis, prevention and treatment of mental disorders.

I have undergone psychological counseling in both group and individual settings over the years. The time when I found it most helpful was before I finally got a proper diagnosis of RSD and started infusion therapy. At the time, I was beginning to feel like a guinea pig. Some providers didn’t know what to do with me and having a psychologist providing support and making sure my mental attributes were strong was very helpful. 

I still use some of the mindfulness techniques he taught me to this day. When I was getting ready for infusion therapy, I felt like I had tried every treatment available on earth. Having a professional psychologist to speak with and go over what happens if the infusion didn’t work prepared me for a worst-case outcome.

Luckily, I didn’t need it, but it did teach me that even though I felt like I had tried everything, there are always new options being created and that I had not actually tried everything.

This is one of the reasons I am so sure that the alternative treatments I have been presenting over the last 8 months are helpful to others. I never realized until I did the research that there are so many different things to try. Using a multi-modal approach to pain and understanding that the mind, body and spirit connection are real is important not to neglect.

There were times when my providers suggested that I go to a psychologist, and other times when I had to get psychological clearance for different procedures. I found that when I went to a session, I felt better about myself. It was "me time" -- a time to focus on getting through the depression and anxiety of living with a chronic illness.

I learned that chronic pain affects our brains and causes depression and anxiety, and that it was not the other way around. That there are tools and medications to address them, and that knowing myself and what is going on with my health was one of the best ways to get past the depression and anxiety.

Psychologists gave me aptitude tests to check my general knowledge, verbal skills, memory, attention, reasoning, and perception. A few also gave me personality and neuropsychological tests. The more I learned about myself, the better I was able to navigate through chronic illness, the people around me, and the better relationships I was able to achieve.

I once again look forward to reading your comments. What treatments have you tried, what has worked, and what didn’t work? What tips do you have to pass on to other readers? Have you found the treatment protocol that works for you?

I personally don’t believe that there is a magic pill or procedure that can cure chronic pain - yet. I also strongly believe that the patient and their providers should be making the decisions for what is best for the patient.

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.

I Think of Death Every Day

(Editor’s note: Pain News Network regularly receives emails and comments from readers in physical and emotional distress because their chronic pain is not being treated or is undertreated. Many have been abandoned by their doctors. And some are having suicidal thoughts.

The following email came from “Sharon” – who lives with chronic pain from neuropathy and a severe hip injury. Sharon gave us permission to publish her email, as long as her full name was not disclosed. Some readers may find her story disturbing, but it is representative of what’s occurring in the pain community and therefore worth sharing.)

By Sharon

When I first got ill, I was an avid backpacker and ran a health food store. A very healthy and health conscious 37-year old woman.

I tried every alternative treatment.  The first was hypnosis. Then I tried colonics, lemon and oil heat packs, acupuncture, massage. The list goes on. NOTHING TOUCHED THE NERVE PAIN. 

I had an old .357 handgun. The same type police carried at one time. I also had an old .45.  I thought about it every single day. 

But I didn’t want my family or friends to find me like that.  A bloody picture in their heads whenever they thought of me.  

Taking your own life because of the ignorance of others, just isn’t fair.  To be pushed into it by others. Especially when there is medication that works.

Once I finally decided to try opiates, no doctor would listen to me.

I did everything they asked. I jumped through all the hoops. Multiple times. 

I was shamed over and over again, because I was in pain. I was called a malingerer. 

Never thought I would get sick at such a young age.   I thought I’d be healthy and happy like the all the other healthy women in my family.  

I finally did find a wonderful, caring doctor.  He treated me until just last year. When he was shut down.

I’m lucky. I did find another doctor. It took about 3 weeks. It was Christmas time.  Almost impossible. 

I like this clinic. But I have to drive 80 miles round trip.  

I’m 60. I’m not in good health. My husband passed away a few years ago.

My sweet little grandmother took her own life at 92. She was an amazing woman. 

I hope I never have to do that.  

But it’s in me. I could. I think of death every day.

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.

Tell Medicare to Stop Its War on Pain Patients

By Richard A. Lawhern, Guest Columnist

In March 2016, the Centers for Disease Control and Prevention published a deeply biased and scientifically unsupported guideline for the prescription of opioid pain relievers.  Congress made this “guideline” mandatory in the Department of Veterans Affairs three months before it was even published.  The VA has since enacted practice guidelines that effectively eliminate opioids as a treatment option for many veterans. 

Now the Department of Health and Human Services and the Centers for Medicare and Medicaid Services (CMS) are doubling down on this bureaucratic atrocity.

CMS has posted in the Federal Register and is inviting public comment on its plans to change the rules for Medicare Part D prescription drug plans in 2019.  

They propose that "all sponsors [are] to implement hard formulary-level cumulative opioid safety edits at point-of-sale (POS) at the pharmacy (which can only be overridden by the sponsor) at 90 morphine milligram equivalent (MME)" – which is the dose ceiling recommended by the CDC.

The so-called “sponsors” are insurance companies that provide health care coverage funded by taxpayers to 54 million Medicare beneficiaries. If implemented, this proposal will effectively deny reliable pain treatment to millions of seniors, poor and disabled people.  When applied to private health insurance and Medicaid as they inevitably will be, these regulations will damage all U.S. citizens.

As I have commented to CMS, their proposals “mandate a dangerous, unfounded and medically unethical intrusion into medical practice by third parties operating without face to face knowledge of the patient. These … changes will damage and deny care to large numbers of the 1.6 million patients whom CMS estimates are presently treated with opioids above 90 morphine milligram equivalent dose per day.”   

Few pain patients ever display diagnostic symptoms of opioid use disorder. Yet drug-related overdoses have risen steadily in the past ten years -- despite restrictions on the medical supply of opioids -- a death toll largely associated with illegal opioids and nonprescription drugs. Managed medical exposure to opioids contributes almost nothing to the widely hyped “opioid crisis.”

Over-regulation of prescribing is already harming hundreds of thousands of stable patients coerced into opioid doses below therapeutic levels.  Mandated VA restrictions on opioid prescribing are directly responsible for hundreds of deaths among veterans. 

All for nothing.  And CMS is about to do more of the same.

A major study in the British Medical Journal illustrates the foolishness of the CMS proposal.  Diagnoses of opioid abuse disorder were tracked for 565,000 opioid-naïve post-surgical patients between 2008 and 2016. Only 0.6% were later diagnosed with Opioid Abuse Disorder (OAD).  Less than 1% renewed their prescriptions up to 13 weeks.  OAD incidence was only weakly sensitive to dose level from less than 20 to over 120  MME  per day.   

Another large study in JAMA Internal Medicine shows the incidence of extended post-surgical opioid prescriptions at just 0.174% to 0.9%, depending on the type of surgery.

CMS is trying to “solve” a non-problem by means guaranteed to create far worse problems.

The CDC Guidelines ignored the natural variability in liver enzymes governing the way opioids are broken down in the body.  Imposing hard limits on MME in “safety” audits will cause therapy failure in hundreds of thousands of patients who can benefit from opioids, but only at significantly higher doses than entertained by CDC and CMS. 

In January 2018 public hearings before the FDA Opioid Policy Steering Committee, the American Academy of Pain Management recommended against hard limits on opioid analgesics.  Other speakers advocated for leaving practice standards to medical professional associations which guide doctors in each specialty.  CMS has ignored both recommendations.

Forcing pain patients to go through an “exceptions” process before extending prescriptions beyond seven days is inappropriate and dangerous nonsense.  Prevailing practice allows for prescription duration sufficient to treat anticipated pain levels.  The alternative is to drown doctors in useless paperwork and to prompt patients to defer needed surgery because they fear being left without pain control.

There is no one-size-fits-all patient or treatment plan.  CMS should stand down from attempting to force restrictions on medical practice which have such predictable and horrid consequences.  

What Can Patients and Caregivers Do?

First, you can register your protest and concern with CMS before March 6th by selecting the “Comment Now!” buttons at this link.

You don’t have to be a doctor or researcher to do this.  Here are some examples of comments you might make.  Please edit them to fit your own situation.  Don’t copy these words exactly, as CMS will delete them.

    A. I am a chronic pain patient with ___________ (one or more diagnoses)

    B. My medical care will be greatly damaged by your regulation.

    C. I rely upon opioid medications to: (fill in)

• Preserve my way of life            
• Manage my incurable pain
• Allow for increased function
• Remain productive

     D. If CMS enforces a hard limit for opioid doses per day, this will give private insurance companies and pharmacies  an excuse to stop paying for my necessary prescriptions or dispensing them at all. 

     E. The proposed regulations are unsupported by any reliable science

     F. If enacted, these policies will: 

• Force even more doctors away from treating pain          
• Force more patients onto disability
• Create more demand for emergency room services
• Increase the rate of expensive and often ineffective surgical procedures
• Increase the rate of suicides

To review the comment process, feel free to visit the Facebook page for the Alliance for the Treatment of Intractable Pain (ATIP).

The second thing you can do is look up the Washington DC phone numbers of your House and Senate representatives. It’s easy. Just Google your state and the word “senators” or “Congress.”

Then call their office.  Tell the staffer who picks up that “I’m a pain patient and I vote in (name the state).  I want the Senator (Congressman or -woman) to tell the Centers for Medicare and Medicaid Services to withdraw their proposed regulation limiting the treatments I can receive.  If accepted, these regulations will destroy my life.”

It is time for people in pain and caregivers to speak up.  If we do not, then we will live – or die – as victims of a medical bureaucracy that doesn’t care about the damage it does to us.

Richard A Lawhern, PhD, is the co-founder and corresponding secretary for the Alliance for the Treatment of Intractable Pain (ATIP). He is a technically trained non-physician patient advocate with over 20 years experience in direct support to patients and caregivers in social media.  His work on public policy for pain management is widely published in multiple online and print media.

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.

#MeToo and Bad Doctors

By Crystal Lindell, Columnist

I recently had a really bad experience with a doctor.

He tried to pressure me into getting a spinal cord stimulator that multiple doctors have said I should not get. And when I tried to say no, he got visibly angry and started being incredibly condescending.

He said my other doctors didn’t know what they were talking about. That I didn’t know what I what I was talking about. That the internet didn’t know what it was talking about. That everyone else was wrong, he was right and to disagree was painfully stupid.

And I have to tell you something, it impacted the same part of my brain and my soul that gets damaged every time a man tries to force me to do what I don’t want to do in a sexual situation. When he pushes well beyond all my boundaries, insisting on a date after I clearly said no. Insisting on more in bed, after I clearly said no.

I felt just as vulnerable in his office as I have with horrible men in their cars who tried to force me to kiss them while they ignored texts from their wives.

I can only imagine that this doctor is a man who is not used to hearing the word no, and I would guess that as much as he doesn’t like to hear it from his patients, he doesn’t like to hear it in romantic encounters either.

I was stressed about the whole thing for weeks after. And when I had to go back to his office for a treatment only they do locally, I had a nightmare the night before that the nurses there were chasing me down flights of endless stairs and setting my hair on fire.

Dreams are weird. But they are often a reflection of some larger truth. And the larger truth here was that the whole thing made me feel violated. And scared.

This was a man who wanted to do something to my body that I was clearly against him doing. And when I resisted, he just pushed harder to get his way and then insulted me for declining. It’s not so different from what many women face from men in the bedroom. And it felt just as traumatic for me.

There is a cultural shift happening for women. There’s #MeToo and #TimesUp, and as the French say, #BalanceTonPorc -- or squeal on your pig. The painful reckoning is happening, as we realize that half the population are actually human beings too.  

But if you are struggling to understand how it feels to be viewed as inferior all the time — either because you’re a man or one of the lucky women who hasn’t experienced it — I can tell you that sitting across from a doctor who doesn’t believe you, doesn’t trust you, and who implies you are too stupid to make decisions about your own body is a very similar feeling.

I wish I had some wise words to end this column on — that I could share some wisdom about how to make the world a better place. But the truth is, I don’t really know how to do that, at least not in any practical way that goes beyond just freaking be kind to the other people you encounter.

So I’ll just leave you with this potential for some sort of justice. I have reported this doctor. He is being investigated. And hopefully, it will save other patients the pain of such an experience — at least from him.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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

Rare Disorders Require Unusual Care

By Roger Chriss, Columnist

A lawsuit challenging the constitutionality of listing cannabis as a Schedule I drug under the Controlled Substances Act is underway in New York City.

The plaintiffs, including an Iraq War veteran with PTSD and a 12-year-old girl with a rare seizure disorder, are claiming that the government’s decision to classify marijuana as an illegal controlled substance is irrational, unconstitutional and motivated by politics, not science.

The position of the federal government is simple: Marijuana has no accepted medical use and poses a significant risk of abuse and addiction.  But the situation is complex and emblematic of a larger issue – which is the medical treatment of people with rare and incurable disorders.

Modern medicine is an increasingly precise undertaking involving thousands of possible diagnoses, many with multiple treatment options.

There is a wide range of disorders that involve crippling anxiety, including post-traumatic stress disorder. There are also many seizure disorders, including conditions like Dravet syndrome and Lennox-Gastaut syndrome, that are extremely difficult to treat.

In the same fashion, there are hundreds of disorders that cause debilitating pain that persists for months, years or even a lifetime, including interstitial cystitis, Complex Regional Pain Syndrome, and trigeminal neuralgia.

Many of these disorders are rare and entirely unfamiliar to non-specialists. But even when the disorder itself is not so rare, its presentation may be rare in terms of severity. Fibromyalgia and osteoarthritis are common enough, but still can be debilitating in some cases.

As a result, research on such disorders is thin and clinical trials are few and far between. For instance, there are no studies of cannabis for small fiber neuropathy and only a handful on cannabis for cluster headaches. When trials do exist, they are easily criticized as being statistically underpowered because of the small number of participants.

Moreover, standard treatments do not necessarily work for everyone. Neuropathic pain sometimes responds well to neuroleptic drugs like gabapentin (Neurontin), but as a recent Cochrane review found, over half of those treated with gabapentin will not have worthwhile pain relief and may experience adverse side effects.

Usual Rules Don’t Apply

Many people with rare disorders are often medically atypical in other important ways. Patients with Ehlers-Danlos syndrome, for example, are famously intolerant of a wide range of medications. So the usual rules about medications may not even apply to people with rare disorders.

All of this creates obvious clinical difficulties. It is not easy to develop standards of care for rare disorders. General recommendations are based on limited clinical experience and testing, often with people whose reactions to common, generally well-tolerated medications are unpredictable and potentially dangerous. Thus, medications that are controversial may still be useful for people with rare disorders, especially if they are refractory to common treatments.

The opioid crisis has been national news for years, with many states, insurers like Kaiser Permanente and Intermountain Health, and drug store chains like CVS moving to reduce prescribing levels. But for some conditions, opioid medication remains one of the few viable alternatives.

For instance, the Mayo Clinic recognizes the value of opioids for refractory restless leg syndrome, calling them “a mainstay in the management of these patients.” And the National Institute of Neurological Disorders and Stroke acknowledges the complexity of neuropathic pain when it lists opioids and anticonvulsants as potentially useful.

The situation is similar for medical cannabis. The federal government gave marijuana Schedule I status in the 1970s, but many states legalized medical cannabis in the past two decades in part to deal with rare disorders that do not respond to conventional treatment. Clinical research is justifying this.  A 2017 trial of cannabidiol for drug-resistant seizures in Dravet Syndrome found that cannabis based medication reduced the frequency of convulsive seizures.

In other words, rare disorders involving problems such as severe pain, seizures or anxiety require highly specialized care using all available options. In many cases, people with these disorders have failed first-line therapies and even second-line therapies. They are facing choices that do not occur in everyday clinical practice but now have to be considered.

Thus, the issue here goes beyond rescheduling cannabis or reining in opioid prescribing. The average person has little if any medical need for these substances. But medicine has to address the needs of all people, and healthcare laws and regulations cannot ignore the reality that some people are living with challenging and rare disorders.

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.

Jeff Sessions, Aspirin and Toughing It Out

By Crystal Lindell, Columnist

My first reaction to reading that Attorney General Jeff Sessions thinks pain patients should just “tough it out” was probably not appropriate for this publication.

My second reaction probably wasn’t either.

If you haven’t heard, Sessions hates drugs. Like a lot. He literally once said, “good people don’t smoke marijuana.”

And now, he apparently thinks good people shouldn’t use opioid pain medication.

"I am operating on the assumption that this country prescribes too many opioids," Sessions said during a speech at the U.S. Attorney’s office in Tampa. "People need to take some aspirin sometimes and tough it out.”

Okay. Look. Setting aside the fact that data consistently shows that most people do not start heroin because they received a legitimate hydrocodone prescription, let’s talk about this whole idea of “toughing it out.”

Because that’s the thing about pain, when it’s not yours, it’s incredibly easy to endure. All you really have to do is throw around clichés about being a strong person, and maybe sprinkle in some lame advice about yoga and acupuncture.

Depending on your mood, you might even add in a few judgmental asides about avoiding gluten and getting enough exercise. And just like that: Voila! You’ve dealt with it! Problem solved.

But when it’s your pain. When it’s eating away at your soul, it’s never that easy. And it never gets easy.

Left untreated, the pain that wraps around the right side of my ribs has left me dreaming of drowning in a bottle of Drano just to make it stop. It has buried me in bed and left me for dead, so heavy on my chest that I can’t get up. It has stolen my nights and destroyed my days. And it has done its very best to rob me of my hope. 

In short, it’s been hell. And the words that would make you truly understand how awful it has been do not exist.

But thankfully, I found a doctor who has helped me get through hell and manage my constant pain with opioid pain medications.

And it’s because of those medications that I can live. I can work. I can be a friend, and a sister, and a lover, and a writer, and daughter. I can be connected to the magic of the universe again.

There is so much we can do to fight the opioid epidemic. Those suffering from addiction need long-term treatment that includes professional psychiatric help. They need to be offered medicated withdrawal when needed, and given a strong support system. And they need empathy.

In fact, it’s the same empathy pain patients need, just applied differently.

I don’t expect a man like Jeff Sessions to understand this. He has never been in horrific pain. And honestly, as much as I hate him, I hope he never is.

But if he does wake up with pain one day, and realizes how important it is to treat that pain, I hope he looks back on his life with regret and remorse, as he realizes how incredibly wrong he was to ever suggest that people in pain “tough it out.”

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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

Motivational Speaking for the Pain Community

By Barby Ingle, Columnist

There are many types of patient advocates. One of my favorite is being a motivational speaker. Sharing my personal story of trials and challenges -- and how I overcame them -- is motivational to me and inspirational to those who have heard me speak at pain conferences.

I often get the comments like: How did you learn to be a motivational speaker? How can I share my story with the world?

Many pain sufferers have compelling stories of over treatment, undertreatment and mistreatment by the medical system, but they are not as focused as they need to be for motivational speaking. I'd like to share a few tips that I’ve learned.

First, you have to create a plan. You have to become the expert of your own story. And you need to develop a goal or outcome that you want your listeners to learn – an “action item” for them when your presentation ends.

After you organize your thoughts and create your presentation plan, figure out how long your talk is going to be. You could be allotted anywhere from 10 minutes to an hour to speak. I know I could go on for 8 hours straight on some topics. Do you need to save time for questions? Do you want to allow people to interrupt you during your presentation or after?

Where do you speak? If this is totally new to you, you may want to start at your child’s school for career day. Yes, being disabled and having chronic pain is equivalent to a career. I actually wish some of the parents who were disabled or chronically ill when I was growing up would have come to my school to do a presentation. It helps plant a seed, so that if a child or their family member finds themselves in a similar situation, they can remember the lessons they learned.

Another place to speak is your church or local library. After you speak 10-20 times to smaller groups and develop a focused and polished presentation, you can turn to your local hospitals and pain clinics and see if they need a presentation from the patient’s perspective. There are also online opportunities, such as webinars put on by nonprofits, Facebook or Periscope live sessions that can help you practice and develop your public speaking skills.

As you build experience, you will sharpen your message, get better at understanding your audience, and learn what is best to skim over and what is important to present in full. Having backup material to present is also very helpful.

Be prepared for anything. I once passed out during a speech. Just fell over. How would you handle it? I had them bring me a chair and a water bottle. Now I always go on stage with a water bottle.

Finally, understand that motivational speaking is not for everyone. It takes someone who is organized and willing to share the messy details of their life with actionable goals on how to turn it around. As my friend Judy Carter says, “You can’t have a message without a mess.”

It takes work. I practiced speaking with my dad and husband, tape recording myself to see how many “um's” and “like, you know” I was saying and how to cut them out. The secret is practice and preparation.

The breakdown of steps for me goes like this:

1. Write down your topic, facts, personal story and the “take away” for listeners
2. Practice by yourself
3. Practice in front of someone
4. Put yourself out to the world as a potential speaker
5. Stay within your allotted time -- which requires you to be focused and practiced
6. Allow time for questions at the end. If no one has any, have a recap message ready so you can end on a positive and productive note.

Keep in mind that you are a pain patient and sometimes you have to prepare by resting – both before and after your talk. The endorphins I get when on stage are a pain reliever for me, but when they wear off I hit the bed and need a few days of recovery. Be ready for this to happen to you.

It’s more important than ever for pain sufferers to share their stories. We are poorly understood and often ignored when decisions are made about our healthcare. We need to be our own best advocates – whether it’s testifying at a legislative hearing, participating in a pain support group, or speaking at your child’s school.

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

Darknet Markets and the Opioid Crisis

By Roger Chriss, Columnist

Darknet drug markets are far larger, more pervasive and more involved in the opioid crisis than is generally realized.

The U.S. Senate recently released a report stating that $800 million worth of fentanyl pills were illegally sold online to customers in the U.S. over a two-year period. Purchases were made from 43 states, with the most orders coming from Ohio, Pennsylvania and Florida.

Sellers are so sophisticated they accept multiple forms of payment, preferring Bitcoin because the cryptocurrency is hard to trace. But they are also using Western Union, MoneyGram, PayPal, credit cards, and prepaid gift cards.

But the Senate report barely scratches the surface of the online drug market.

Drugs have been available online since the beginning of the internet. Legend says that the first online purchase ever made was for a bag of marijuana in the 1970s in California.

By the 1990s, drug dealers and traffickers had adopted mobile communications to reach buyers and avoid detection, and the Open Vendor Database listed classified ads for a variety of substances.

The rise of Web 2.0 technology and online shopping led to the Silk Road, the first modern darknet market. Silk Road came online in February 2011 and gained immediate attention in the geek community. Gawker published an article about it in June 2011, and Wired.com also covered its increasing influence and ultimate downfall in 2013.

More darknet markets arose in the wake of Silk Road, including its immediate successors, Silk Road 2.0 and Silk Road Reloaded, as well as Utopia, Agora, and AlphaBay. All relied on internet protocols to anonymize their communications and cryptocurrencies like Bitcoin for relatively secure transactions.

The Tor anonymity network was developed in the mid-1990s by the U.S. Naval Research Lab to protect online intelligence communications. It was designed to be highly secure and easy to use, and is still primarily funded by the federal government. Its purpose is to safeguard journalists and dissidents, and to enable U.S. intelligence operations overseas. But because of how it works, it is well suited for illegal activities, too.

In other words, the internet now makes for an almost ideal operating environment for illegal drug markets. The globalization of the industrial marketplace, efficient international shipping and low-cost mobile communications enable some of these markets to function as efficiently and effectively as online retailers like Amazon.

Modern Darknet Markets

The modern darknet is now a major source of heroin, illicit fentanyl and other illegal opioids, as well as virtually every other illegal substance imaginable. The scale of this market is staggering, and its efficiency is stunning. Darknet markets look like familiar online merchants, complete with user reviews, shipping information and promotions, as well as excellent customer service. In practical terms, this means that a person who wants a particular substance can obtain it almost overnight with little more than a few clicks or taps.

The darknet is sufficiently sophisticated to have its own news sites, market information and discussion forums. Activity is tracked and discussed with precision and zeal.

Measuring the precise size of the darknet economy can be challenging. From 2013 to 2015,  Carnegie Mellon researchers estimate that darknet sales volume fluctuated between $100 million and $180 million annually. Importantly, sales volume remained about the same even after law enforcement crackdowns and arrests.

The darknet operates with relative impunity for a variety of reasons. Drugs are sourced from manufacturers in multiple countries, not just China, and substrates for these drugs are also sourced from multiple locations. Thus, the manufacturing supply chain is not vertically integrated and cannot be easily disrupted. Instead, it is highly diversified, making it robust against arrests, takedowns and product interdiction.

Transport and delivery of drugs involve not only the U.S. Postal Service, but every other mode of shipping. This includes conventional approaches like UPS and FedEx, as well as private courier services and livery companies. It extends to tunnels, boats, aerial drones and ad hoc transportation services arranged online.
 
In addition to darknet markets, there are also unlicensed online pharmacies, pill mills, and rogue physicians. It is not clear if the darknet is supplying street dealers, but it seems safe to assume that these illegal operations are interacting in mutually beneficial ways.

Attorney General Jeff Sessions recently announced the formation of the Joint Criminal Opioid Darknet Enforcement (J-CODE) unit, which is made up of federal agents and cyber experts whose aim is to dismantle darknet markets. This comes on the heels of the newly formed Opioid Fraud and Abuse Detection Unit, whose focus is opioid-related healthcare fraud.

While these efforts may help reduce the flow of illegal drugs, they will have to be highly innovative in their approach. Darknet markets have quickly recovered from previous law enforcement crackdowns and are more resilient than ever. Many are located outside U.S. jurisdiction, often with people in one nation, technology in another, and merchandise in yet another, making investigation and extradition very difficult.

In other words, defeating darknet markets is akin to eliminating a termite infestation when the nest is not on your property. New approaches will be needed, and addiction prevention and treatment become all the more important when the flow of illegal addictive substances cannot be readily slowed.

Darknet markets are playing an increasingly important role as a source of heroin and illicit fentanyl, the two key drivers in the opioid crisis. This is not surprising given the history of drugs online and the fact that opioid abuse and addiction usually starts with recreational use. A failure to recognize this -- exacerbated by efforts to shrink the supply of legal prescription opioids -- has hampered the response to the opioid crisis and is contributing to rising overdose fatalities.

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: Tough Luck

By Carol Levy, Columnist

For the first time in almost 40 years, two doctors said the same words to me, the words I have always dreaded: “Tough luck.”

Their words were meant to be kind, but the meaning was the same: There is no cure.

That is the last thing I want to hear.  The last thing most of us want to hear.

I am a new patient of both doctors. They do not realize I am like a woman who fell overboard, clinging desperately to the side of the ship. I cling desperately to hope – the hope that someday, someone, something, will end the pain. It is what keeps me fighting.

It is that little sliver of hope, even after all this time, that there is an answer. And then I could work again. Do anything I want to do. And do it without pain.

For all intents and purposes, I have been mostly housebound for the last 39 years, except for 3 months in 1977 when I had my first and only completely successful surgery.  I got a job as soon as I was permitted. I made wonderful new friends. We went out every weekend and during the week too. It was glorious. And then, one day while at my desk, a trigeminal neuralgia pain tore into my temple. And my life was lost again to the demon pain.

I do get out of my apartment. I take a class 2 times a week at my local Y. I am active in politics and try to get to the  monthly meeting and other events. I go to the grocery, the bank and doctor's appointments. All of these make the eye usage and eye movement pain much worse, but I do them and get through them (sometimes with a little narcotic helper). But absent those times, I am home.

The pain comes even when I am doing nothing. Staying home does not give me control over it. But by staying in, I reduce the number of times I am actively inviting the pain to get worse. Little by little, unconsciously, I am miniaturizing my life, doing as few things as possible so I don't exacerbate the pain.

This is no way to live, so I still search.

My pain management doctor tries new medications. They have not helped so far. It does not stop me from continuing to up the doses, as prescribed, just in case. As he writes out the prescription he is clear: “Maybe one of these will reduce the pain but you can't expect more than that.”  

In other words, tough luck.

Meanwhile, my neurosurgeon has given me two last and final options. He can redo a procedure I had in 1980 that helped with the spontaneous pain (that could be triggered with the touch of a hair), until it failed 5 years later. Unfortunately, while doing the operation they removed bone in my neck. They took out way too much and my neck “fell down.” It is now held up with clamps in the front and back of the cervical spine, which are held in place by 12 pins.

Because of this, my new surgeon can’t go in where or the way he wants. It makes the outcome and risks much more unknown. There is only a 45% to 55% chance it will work, with a risk of paralysis among others. Almost equal odds.

The other option is worse, the odds are even: 50–50. Worse still, the operation is essentially psychosurgery. He would place a lesion in the frontal cortex of my brain. “You will still have pain, you'll just not perceive it as pain,” he explained.

So, what do I do? What do we do when faced with equally awful choices?

I honestly don't know.

I do know that learning to live with pain, what so many of us are told, is of no help when no one tells us how to do that. If they would, maybe “tough luck” would be an acceptable option.

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.

Vietnam Veteran: 'I'm Done Fighting'

By Gregg Gaston, Guest Columnist

My story is one of hopelessness. I am 62 years old and a navy Vietnam veteran. I did my time in Vietnam and was discharged honorably as a Chief Petty Officer in 1985 but did not retire.

I went to Kuwait as a logistics advisor for the Kuwait Air Force, stayed there for two years and then returned to the U.S. Desert Storm happened two years after that and I received a phone call wanting to know if I wanted to go back to support the Kuwait Air Force in efforts to retake their homeland. Back I went and stayed through 1995.

In 2002, I developed chronic back pain and had back surgery a few years later. The surgery went badly from the start and was not successful. The pain only grew worse and I was eventually diagnosed with peripheral neuropathy and failed back surgery syndrome. 

Then came the Veterans Administration, which diagnosed me with presumptive Agent Orange exposure. The VA would only pay for treatments for the myriad of things related to Agent Orange, such as pain meds for my legs and medications for high blood pressure. This medicine was prescribed through the local civilian pain management clinic.

I tried every combination of painkillers you can imagine, including but not limited to hydrocodone, methadone, gabapentin and morphine.

My doctor wanted to implant a morphine pain pump, but I refused. 

GREG GASTON

Time passed, and things got worse at the VA. A new voucher system, changing regulations, scheduling problems and constantly changing doctors took its toll on me -- as well as trying to differentiate between what happened during which war. At that point I fired the VA and embarked on my journey into privatized medical care. 

I was exposed to sarin gas during Desert Storm, so by then my ailments included chronic back and neck problems, peripheral neuropathy, post-traumatic stress syndrome (PTSD) and extreme blood pressure problems. No drug completely relieved the pain, but I would take anything that helped even just a little. Over the years my doctors kept admitting they knew I needed more, but pressure from the government and the insurance companies limited what they could prescribe. 

Now we're into the present day and recently my doctor dropped me from three 50mg tramadol down to one 50mg tramadol per day. TRAMADOL for God's sake! I promptly told him where he could stick his tramadol. 

My doctor and I previously had a talk when I was hospitalized with two strokes on the same day. My directives to him were very simple. If you're not going to treat my pain, you're not going to treat anything. With that I stopped taking all my medications. I tried to explain about quality of life, which at this point I had none. It seemed to go over his head. Hospitals now only treat you for why you are in the emergency room, and even though you're admitted that's all they're treating. 

I've given up and am waiting now to die. I've lived a great life and have no expectations of my quality of life improving. 

I'd like to thank the VA, the other government agencies involved, legislatures and my local doctors for putting all their efforts into making things tough on people that are addicted or need pain medication.  

They have a problem which they don't know how to solve, so they’re taking the easy way out by taking all the meds away from EVERYONE. Screw those who really and legitimately need them. 

Common sense is fast disappearing. I'm done fighting, but I'll always be proud of my naval service and of my service to the State of Kuwait. Good luck to us all. 

Greg Gaston grew up in south Jersey and now lives in Texas. He has two daughters, six grandchildren and two great grandchildren.

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 Medical Tests Don’t Find a Cause

By Crystal Lindell, Columnist

One of the things doctors always tell you is that it’s really, really good news when a test comes back all clear. When nothing shows up on the MRI, bone scan, ultrasound or blood work -- that’s a good thing.

But let’s be honest. It sucks.

As a chronically sick person, I find I go through phases. There’s the “Let’s try every treatment and get every test” phase, which is usually followed by the “Everything and everybody sucks and I’m never going to get better so I should just kill myself” phase. Then comes the “Okay, I’m in a good place again, let’s see if we can fix this” phase. Repeat for infinity.

I recently started dabbling in the “Let’s try every treatment and get every test" phase again, and it’s meant seeing new specialists, trying new treatments and getting more tests done.

But, as per usual, nothing ever shows up on any of the tests. And it is the most maddening feeling when you see that your upper abdomen is again declared healthy by a machine that knows nothing about the you, especially when being touched by said machine was so excruciating that you had to push the tech away mid-test.

I’m coming up on my 5-year pain-niversary soon. That’s half a decade now that I’ve basically lived my life feeling like I had a broken rib — about 15 percent of my time on earth spent feeling mostly like I’m actually in hell. And nobody seems to have any idea why.

My primary care doctor, who I love, recently told me he sometimes finds himself sitting around contemplating my situation and wondering what could have possibly caused such a random pain in a random place. My doctor. Who works as an internal specialist at a university hospital. This is the man who has literally no idea what is wrong with me.

And something is wrong with me. I wake up most days feeling like a cinder block is crushing my ribs and I can’t take showers without also taking hydrocodone. I plan my life around when it’s going to rain, because rain makes the pain feel like a semi-truck covered in butcher knives crashed into my right side. And I can’t wear any bras that have even a hint of underwire.

But despite all that, nothing ever shows up. Ever. My bones are healthy. My liver is healthy. My bile ducts are healthy. My blood is healthy. My muscles are healthy. Everything is always healthy.

Except that it isn’t.

And all those tests coming back all clear are enough to make you think you’ve lost your mind. Is it possible to literally imagine crushing rib pain? Have I actually made it all up in my head? Is this all just some sort of awful illusion?

Even my doctor doesn’t seem to know.

So in addition to the painful and expensive treatments and the daily toll of pain, I also have to deal with the psychological burden of constantly reminding myself that, yes, I am sane and yes, all of this is real.

It’s exhausting.

And if my calculations are correct, based on life expectancy and my bad luck, I probably still have many half decades ahead of me filled with the same thing.

You learn to cope. You learn to manage. You learn how to avoid flares. But it doesn’t get easier. The pain doesn’t get less painful. It’s always there, like a raging siren only you can hear — on repeat for infinity.

Which is why the most important thing you can say to someone in pain, any kind of pain, is and always will be three simple words — I believe you.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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

Does Genetic Testing for Opioid Addiction Really Work?

By Roger Chriss, Columnist

Prescient Medicine recently announced LifeKit Predict, a gene screening test to determine who is at risk for opioid addiction. The company states that it “can identify with 88% specificity that someone may have a risk for opioid dependency” and “provides assurance -- with 97% sensitivity -- that an individual may not have increased genetic risk for opioid dependency.”

Those are strong claims. The idea that medical conditions and behavior can be predicted by gene variants is appealing. But any such test has to answer two questions:

Is it possible in principle? And does it work in practice?

Genes and Behavior

The pathway from gene variant to behavior is very complicated. Research on the genetics of opioid addiction has found “evidence for genetic susceptibility to substance use disorders” in twin studies, but non-genetic factors are known to play a significant role as well.

Moreover, the connection between gene test results and clinically useful information is complicated. Genetic testing often finds pathogenic variants with no clinical significance. A person can be a perfect match for a rare disorder in the most advanced genetic test available but have no symptoms, so at a clinical level that person does not have the disorder. Only in a handful of cases does a specific gene variant lead to a precise fate: Huntington's disease is the standard example in textbooks.

Addiction is generally thought of in terms of the biopsychosocial model of medicine, as Maia Szalavitz explains in her book, Unbroken Brain.

“There are three critical elements to it; the behavior has a psychological purpose; the specific learning pathways involved make it become nearly automatic and compulsive; and it doesn’t stop when it is no longer adaptive,” she wrote.

The National Institute on Drug Abuse reports that “genetic factors account for between 40 and 60 percent of a person’s vulnerability to addiction; this includes the effects of environmental factors on the function and expression of a person’s genes.”

Thus, genes may play a significant role, but many other factors are also at work. A genetic test to identify an increased risk for opioid addiction is plausible in principle. But non-genetic factors make it tricky in practice.

Real World Performance

Prescient Medicine has not yet validated its product with large-scale testing in the clinical setting. There have been no clinical studies of efficacy, nor real-world reports of success or failure rates with the LifeKit Predict tool. These findings are important to know for effective use.

In research published on LifeKit Predict, Prescient acknowledges that “the use of genetic algorithms to determine predictive risk scores is still a relativey [sic] new science. Prospective, longitudinal studies are needed to better definne [sic] the breadth of the test’s importance."

A prospective trial of chronic pain patients with LifeKit Predict to see who develops opioid use disorder would be optimal. But for a variety of reasons, including ethical considerations, this test may not be practicable. Instead, Prescient could test people on long-term opioid therapy who did not develop opioid use disorder and compare the results with people who did develop opioid use disorder. Findings here would shed light on the validity of the 16 gene alleles that Prescient is using.

For now, Prescient is reporting on sensitivity and specificity. These two terms have a precise meaning in statistics, but the following medical example captures the essentials:

A molar (butterfly) rash is very sensitive for lupus but not very specific. It is rarely seen in any disorder other than lupus, so if a person has it, lupus should be suspected. But it is only seen in about half of people with lupus, so not having a butterfly rash doesn't mean you can rule out lupus.

But the sensitivity and specificity of LifeKit Predict in the ranges given by Prescient represent a significant risk for false positives and false negatives, potentially limiting the real-world value of the test.

GenomeWeb reported that Yale University professor Joel Gelertner, an expert in genetics and addiction, was skeptical that LifeKit’s “predictive power would hold up when applied to larger datasets, and argued that in the absence of better validation, physicians should not use this type of testing."

Further, LifeKit has not been compared with established tools for opioid risk assessment. The Current Opioid Misuse Measure (COMM-9) and the Opioid Risk Tool (ORT) are both simple and familiar instruments for evaluating the major risk factors for opioid use disorder.

Both COMM-9 and ORT are very inexpensive, easy to use, and give results quickly. By contrast, a gene test is expensive and requires weeks to get results. It is not clear at this point if a gene test offers any advantages over these existing instruments.

Opioid addiction risk is at present more readily assessed using tools that are already available and understood. Prescient has developed a novel and intriguing new tool, but still must prove its reliability in clinical settings before the costs and risks of such a test can be justified.

For now it is probably premature to expect this kind of genetic testing to be as useful as it would need to be to be adopted clinically.

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.

Opioid Medication Has Been a Godsend to Me

Susan Lay, Guest Columnist

I have been on pain medication for over 30 years, starting with Vicodin. My doctor at the time wasn't concerned about the hydrocodone in Vicodin as much as he was the amount of acetaminophen in it, as it could destroy my liver.

He sent me to an anesthesiologist, who has been my pain doctor for over 20 years. After all the nerve blocks, physical therapy, imagery, TENS unit, spinal cord stimulator, pain pump, etc., I was given Roxicodone. Afterwards, OxyContin was created and then time released OxyContin.

I couldn't tolerate them, so he gave me fentanyl patches (which were new on the market) with fentanyl lozenges for breakthrough pain. My insurance eventually denied the lozenges. The patches were wonderful because I had no feelings of being “high” like other drugs. They made it possible for me to continue working and have a life. I have used the patches since that first day and they've been a Godsend.

Subsys spray was prescribed for breakthrough pain about 6 years ago, but at $22,000 a month, my insurance only paid for a year.

I'm so fortunate to still have the same doctor, although he's getting older and will retire soon. My main issue has been with pharmacies. I live in a very rural area of California and about 2 years ago my regular pharmacy refused to fill any opioids due to DEA and other concerns. My doctor has continued to write scripts for me, but I found them extremely difficult to fill. All the pharmacies I tried, including Walmart, Rite Aid, Walgreens and Safeway, denied me. Some felt uneasy, would only fill a script for 2 months, or just plain would not fill them!

SUSAN LAY

I tried mail order prescriptions, but they eventually stopped. I tried a small pharmacy 2 hours away, but had to talk the pharmacist into it, after he requested 6 months of medical records and advised me they would only fill my prescriptions every 30 days, with no early refills for vacations.

All has been good this past year, although I don't know if my insurance will continue to cover my meds. I'm 70 and on Medicare Part D. I've never increased the amount of patches or strength I use. I have Dilaudid for breakthrough pain, which doesn't help much, but some. I do what many other pain patients do to get their medication: drive for hours to my doctor once a month, undergo drug tests, sign pain contracts, and use no alcohol. I must go to office if they call for a drug count.

I discovered withdrawal from the fentanyl patches isn't as horrible for me as it is for addicts who just want to get high. I've had to go without for 5-6 days a few times, when the pharmacy was closed or I couldn't get to the doctor. My doctor explained that those in real pain are wired differently and withdrawal is usually easier. He did give me a script for methadone if I'm ever in that position again.

I feel extremely lucky to have a doctor who actually cares enough to help his patients. His contract says if any patient must go off opioids (for missing an appointment, using alcohol or whatever) he will assist us through withdrawal so we don't suffer.

It's the insurance and pharmacies that are causing us so many problems. Does anyone in other states have these issues? Marijuana is legal in California and we're a progressive state, yet even in my small rural area we're having major issues. Several pharmacies have closed, due to scrutiny by the DEA and other government involvement. It's not worth it to be constantly going through records and double-checking the way they do things.

Insurers and pharmacists have more power than doctors. Even with an honest and necessary prescription, they continue to over-ride doctors’ decisions. Pharmacists refuse to fill for quantities doctors have written, even when insurance agrees with that quantity. When a doctor speaks to the pharmacist, it makes no difference. When did pharmacists become doctors? The same goes for insurance companies that now refuse to pay for prescriptions they've covered for years.

I just don't get it. I'll do anything I can to fight FOR chronic pain patients and AGAINST those who don't give a damn about us and think if you use opioids you're a drug addict!

Susan Lay is a retired nurse and day care operator. She lives with chronic shoulder and knee pain.

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.

Why I Am Closing My Pain Practice

(Editor’s note: Patient abandonment is a serious and growing problem in the pain community. Thousands of patients have been discharged by doctors who have grown fearful of treating chronic pain and losing their medical licenses for prescribing opioid medication. We were recently contacted by a nurse practitioner, who offered her perspective on this disturbing trend. The author asked to remain anonymous.)

I am a nurse practitioner who has been in the field of pain management for the past 4 years. Prior to that, I spent years as an intensive care unit nurse and in primary care as an advanced registered nurse practitioner (ARNP).

Working with chronic pain patients has been the highlight of my professional career. I absolutely love my job and about 99% of my patients. I have had two complaints about me made to the Washington State Department of Health, both of which accused me of prescribing too much opioid medication to my patients. Both complaints were investigated by the state and I was found to be practicing within the standards of care -- and essentially told to continue. Which I did.

Then the Seattle Pain Centers closed in 2016, leaving thousands of untreated pain patients in the Puget Sound area. I inherited some of their patients. I felt like I had been "vetted" by the state, and believed that if I continued to do everything according to the law, I would be safe from any legal action.

In my practice, we fight ALL THE TIME for our patients, against the state, insurance companies, pharmacies and even the patient's families sometimes (when they don't understand). I'm not afraid of a good fight, because I have seen patients’ lives turned around when they are finally given the correct amount of opioids. I believe in opioid therapy.

Of course, all the tools in the box should be used, and I refer routinely to physical therapy, interventional pain specialists, surgeons, acupuncturists, chiropractors and others, in addition to prescribing opioids for pain.

Now I find how naive I have been. I have been to national conferences to learn more about pain management, and have heard the top doctors and researchers talk. One of these giants, Dr. Forest Tennant, was recently raided by the DEA. With Jeff Sessions as Attorney General, there is apparently more money being allotted to these raids and more are promised in the future. I also went to a website called "Doctors of Courage" and learned more about the DEA.

My interpretation of the facts is that it doesn't matter if I practice legally anymore. The DEA will look at my prescribing patterns, and tell me that I MUST have known that the ONLY reason any patient would get that much medication is if they are selling it on the street. And therefore, I am a "drug trafficking organization.” The Justice Department takes over the case and the provider is prosecuted.

If convicted, which seems to be the case recently, the provider becomes a felon and serves a prison term. Medical license is lost, time is served and because it is a "drug crime," asset forfeiture law may be used to confiscate everything I own.

'My Fear Is Very Real'

I am married, with a daughter still at home. I cannot do this to my family. So I am joining the legions of others who are closing their pain practices. I have just begun to tell my patients, and have had many, many tears, thoughts of both suicide and homicide, and one very special patient who told me that she will no longer be able to keep her service dog because she will be unable to care for him.

This whole thing is making me literally sick to my stomach. I've cried a million tears for my patients already, and I'm just beginning. I will be carefully weaning them all down to 90 MED per day over the next 6 months, or arranging transfer of care to anywhere the patient would like. What a joke that is -- there is no one else prescribing effective doses of opioids for chronic pain patients. If I am to be thrown in prison, it should be for that -- not for keeping them on therapy that enriches their lives.

I keep asking my husband to tell me that I am overreacting, but as wonderful and encouraging as he has always been, he is scared too.

Please tell all patients that what may have started merely as a provider being paranoid about his or her license has recently morphed into something truly dangerous for us. I will be absolutely no good to anyone, once locked up. If I can stay clear of the DEA's witch hunt, perhaps I can remain a voice of advocacy for pain patients. God help us all.

Please don't use my name if you post this. I can tell you, my fear is VERY real, and I don't want to call any attention to my practice right now. Thank you for understanding.

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.