Prescription Opioids Rarely Lead to Heroin Use

By Roger Chriss, Columnist

A recent Politico column by three anti-opioid activists asserts that “opioid use disorder is common in chronic pain patients”  and that the nation’s overdose crisis “stems largely from the overprescribing of opioids.”

Andrew Kolodny, MD, Jane Ballantyne, MD, and Gary Franklin, MD --  who are the founder, president, and vice-president, respectively, of Physicians for Responsible Opioid Prescribing (PROP) – also wrote that “many individuals become addicted to prescription opioids through medical or non-medical use, and then switch to heroin after becoming addicted."

This claim is an oversimplification of the tragedy that is heroin addiction. It both ignores the complex trajectory of drug use that culminates in heroin and omits the known risk factors of the people who suffer from heroin addiction. It also runs counter to the known data about various forms of opioid addiction, which clearly shows that most people on opioid therapy do not develop problems with misuse, abuse or addiction, and rarely move on to heroin.

The National Institute on Drug Abuse (NIDA) estimates that about 10 percent of patients prescribed opioids develop an opioid use disorder. And only about 5 percent of those who misuse their medication ever make the transition to heroin.

Further, the number of people addicted to prescription opioids -- about two million -- has been stable for over five years, while rates of heroin use have been rising, suggesting there is not a strong corelation between the two.

From 2002 to 2016, the number of Americans using heroin nearly tripled, from 214,000 to 626,000. Overdose deaths involving heroin also soared during that period.

The reasons behind this are complex and not fully understood. One theory is that heroin became more popular when prescription opioids became harder to obtain and abuse. According to a study by the RAND Corporation, the introduction of abuse-deterrent OxyContin in 2010 was a major driver in the shift to heroin.

Heroin use is also strongly associated with mental illness and childhood trauma. Studies have found that 75 percent of people with heroin addiction have another mental illness, with about half showing signs of psychiatric problems or post-traumatic stress disorder (PTSD) before age 16. At least half were abused or neglected as children, with especially high rates of sexual abuse.

In addition, it is well established in psychiatry that certain mental health disorders – such as borderline personality and bipolar disorder -- have a significantly increased risk of substance use.

Thus, heroin use and addiction is far more complex than just a result of opioid misprespcribing. Most people placed on opioid therapy do not misuse their medication, and the few who do become addicted rarely transition to heroin. Recent studies also suggest that more people are starting on heroin without prior exposure to other opioids.

Heroin addiction is most often the tragic outcome of a shattered childhood or mental illness, and not simply a result of medication exposure. To claim that heroin addiction stems largely from pain management is a disservice to both addicts and pain patients, and will only further the suffering of both groups by diverting attention from the real issues.

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.

My Arachnoiditis Family

By Elaine Ballard, Guest Columnist

I live in the rural county of Somerset in England, UK. At the age of 22, I had a sporting accident which eventually left me 80 percent disabled and unable to lead a normal life. 

The accident caused several crushed discs in my spine and a great deal of nerve damage. Over the years multi-level disc degeneration set in, as well as osteoarthritis. I am unable to use a wheelchair, as bulging discs prevent me from sitting without severe pain. I am now 73.

ELAINE BALLARD

Since 1994, I have been confined to lying on a bed in my living room and only leave home to keep hospital appointments. I travel by stretcher ambulance.

Just over two years ago I had an MRI scan which showed I had Adhesive Arachnoiditis (AA) and my life changed drastically yet again. 

Arachnoiditis is listed as a rare neurological condition, but in fact many thousands of people all over the world have been diagnosed with it. There are also thousands of other people who have the same symptoms, but as yet, no diagnosis.

It is difficult for patients to get diagnosed as doctors are not trained to recognize this disease and often fail to even recognize the symptoms.

Arachnoiditis results from severe inflammation of the arachnoid membrane that surrounds the nerves of the spinal cord. It may cause stinging and burning pain, as well as muscle cramps, spasms, and uncontrollable twitching. The most common symptom is severe to unbearable neurological pain, especially to the nerves connecting to the lower back, legs and feet. This can lead to tingling, numbness, weakness and severe pain in the legs and feet.

Other symptoms include sensations that feel like insects crawling on the skin or water trickling down the legs. It can also affect the bladder, bowel and sexual function. Unfortunately for some, it may also result in paralysis.

As this disease progresses, the symptoms can become more severe or even permanent. Most people with Arachnoiditis are eventually unable to work and suffer significant disability because they are in constant pain. Pain is the most dominant factor and it is both chronic and acute. As the disease progresses, it can be relentless and unbearable and sadly suicide becomes an option.

Inflammation of the arachnoid membrane can lead to the formation of scar tissue, which may cause the spinal nerves to clump together and eventually adhere to the lining wall of the dura, the middle layer of the spine. The disease can then progress to Adhesive Arachnoiditis.

What Causes Arachnoiditis

There are a few different causes of Arachnoiditis. In the 1970's a dye used in myelograms was injected during spinal procedures directly into the area surrounding the spinal cord and nerves. The dye was too toxic for these delicate parts of the spine and was blamed for causing Arachnoiditis. This dye continues to be used in some parts of the world.

Bacterial infections and viruses in the spine can also lead to Arachnoiditis. So can complications from spinal surgery and invasive spinal procedures such as epidural steroid injections.

There is no cure for Arachnoiditis and there is little effective pain relief. This is a disease or condition for life. Opioids are offered by doctors, but are not specific to reducing neurological pain of this nature.

It is very sad and cruel that opioids are being clamped down in America and that Arachnoiditis patients are being classed together with people who seek drugs for recreational purposes. We are not drug seekers but desperate victims crying out for something that will stop this relentless and overwhelming neurological pain.

The Facebook support group Arachnoiditis Together We Fight has been an important part of my education in understanding this disease. I am thankful to say it has become more of a family, where members can come in and gradually feel at home while we bring education, support and encouragement. This family atmosphere and great support has saved many lives, as people first arrive feeling suicidal and lost in a medical world that will not help them.

That is why I wrote this poem to show people how important support groups can be and to bring more attention to this rare but life changing disease.

"The Family"

By Elaine Ballard

Lonely, fearfully I knock at the door
Arac greets me, a smile, so kind
I want to die, eyes keep to the floor
"Welcome" she says, but what will I find?

"Welcome" repeated again and again
"Good to have you!" Are you kidding?  
"Family" really can it be true? 
Lost, lonely, rejected... what you too? 

I tell my story, they will never believe
"We understand, you're not alone"
Tears trickle down, I cannot believe
We are bound together by this dreaded disease

Files, inflammation, medication
Head's in a spin, where do I begin?  
Then a hand upon my shoulder
Guides me to those precious folders

Questions answered, hope is rising
Found some friends, pain subsiding
Flares still come but under control
No longer afraid nor out in the cold

We need each other, your pain is mine  
Strength in unity, love is the sign
Moving forward we are free
To Fight Together as one FAMILY

 

Elaine Ballard has written a book about Adhesive Arachnoiditis and how her Christian faith helped her through many difficult flares and times. It is called “The Furnace of Fire” and is available on Amazon. Click on the book's cover to see price and ordering information.

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

Finding Out I Have EDS

By Crystal Lindell, Columnist

It turns out pain has been running through my veins all along. It has been a part of my bones since the day I was born. I just didn’t know it.

I have recently been diagnosed with something called hypermobile EDS, which is a subtype of Ehlers-Danlos syndrome. Basically, my connective tissue is weaker than it should be.

It explains why I spent the last five years feeling like the bones in my rib cage were cracked. It explains why my legs and arms are often painted blue and purple and shades of Army green with bruises from injuries I have no memory of. And it explains why my ankles gave way so often over the years that I ended up with an entire dresser drawer full of beige ankle wraps.

It also explains why everyone who ever loved me would describe me as clumsy. And why I got tendonitis at such a relatively young age. It explains my vision changes and my “bad veins” and my soft skin.  

Readers have privately messaged me many times to get checked for EDS, but I thought it was too rare. I thought my doctors would think I was stupid or crazy for asking about it. And I didn’t think it ran in my family.

I was devastatingly wrong about all those of things.

And at every crossroad over the last few weeks, at every opportunity to find out that maybe I was overreacting, my worst fears were confirmed.

First by the osteopath, who asked if I could touch my thumb to my wrist, and when I showed her I could, said plainly, “Oh yeah, you could definitely have EDS.”

Then by my cousin, who herself has suffered from unexplained pain and health issues for years. When I asked if her doctors had ever thought she might have EDS, she replied, simply, "Yes, they have."

Next came my mom, who I tried to avoid involving in all this for as long as possible, because I knew it would be harder on her than it was on me to find out I might have EDS. As she sat on the couch across from me, she scrolled through the list of signs and symptoms on her phone and then abruptly stopped.

“I think my dad had this,” she said.

A revelation. An epiphany of the worst kind.

Her dad. The man who died when I was 3. The man everyone always said spent his life dealing with unexplained pain. The man I was haphazardly compared to whenever I popped pills. The man who I had no memory of. It was him. He was the link. 

And then the dots just started connecting themselves. Like when you watch an eight-part Netflix show and it takes the characters until the very last episode to realize that the killer was in the house all along and you’re screaming at the TV to try to tell them, but they just don’t see it.

Then, finally, they see it. 

It turns out his mom likely had EDS too. My mom’s grandma, and my great-grandma, Hazel. The family lore is that she was diagnosed with rheumatoid arthritis at 26 and spent most of her life miserable and in horrible pain. I have now discovered that her RA was probably, at the very least, an incomplete diagnosis.

When I talked to her son, my great-uncle, I expected him to prove me wrong. To say something that countered my suspicions. But he did exactly the opposite. The last year of her life the doctors had told him that her body was like a bunch of bricks and the cement holding them together was deteriorating. EDS explained with a construction metaphor.

Even more heartbreaking was that he said all they ever gave her for her pain was aspirin. That’s it. Aspirin. And it did not help.

I had been hoping -- since it was so long ago --- that they were more generous with the pain medications at the time. That they had gladly given her all the morphine she wanted. But, as with so many things lately, the opposite of what I believed was actually true.

I told my pain specialist at the university hospital in Wisconsin about all this. And until the very end I hoped he would prove me wrong. That he would accuse me of being hysterical. But instead, he said simply, “Ehlers-Danlos Syndrome is a possibility, based on your reports and my prior examination. Best bet would be for you to come in for a visit.”

And that’s when I knew. That was all I needed to finally understand that the killer was in the house the whole time.

“Ehlers-Danlos Syndrome is a possibility.”

“Ehlers-Danlos Syndrome is a possibility.”

“Ehlers-Danlos Syndrome is a possibility.”

It played over and over and over in my head. I let myself think for a second. There it is. Ehlers-Danlos Syndrome is a possibility.

I scheduled a visit for March 15. And this week, after spending about 45 minutes bending me like a Gumby doll, he confirmed it. I have hypermobile EDS – or hEDS for short.

I am fairly certain that all of those wonderful, strong people out there who live with EDS will know how devastated I am by all this. And how sad it makes me. I cannot talk myself out of the grief I have been feeling. Because now, not only will I likely never get better, the odds are high that I will get worse. There is no cure, only treatments that manage the symptoms. And physical therapy to prevent others.

All I can think about is the doctor at Loyola from the very beginning. The one I first saw with shooting pain in my wrists five years ago. The one I went back to a few months later hoping to find answers for the new pain in my ribs.

The one who looked right at me and said, “Please stop coming in. There is nothing I can do to help you.”

The one who could have found this so easily, if only he had taken the time to look for it. The one who pushed me into piles of medical bills and doctor visits and nights with unexplained pain because he thought I was making it all up. Or at the very least, overreacting.

I want to go back to his office and show him what I learned. I want to yell in his face, “IT’S EDS! I WASN’T BEING CRAZY! I WAS IN PAIN!! I NEEDED YOUR HELP!!!”

And then I want to cry. Again. Because crying seems like the only appropriate response to all of this right now.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

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.

Opioid Hysteria Has Gone Too Far

By Lisa Kehrberg, MD, Guest Columnist

I’m a 43-year-old physician who retired due to illness at the age of 39. I have a rare genetic disease called acute intermittent porphyria (AIP), an extremely painful and disabling condition.

Due to an enzyme deficiency, AIP causes toxins to buildup in the liver. The symptoms of porphyria are primarily neurological with the most notable being abdominal pain -- a burning sensation that is almost unbearable. The pain is similar to what I’d imagine it would feel like to have a blowtorch placed against my stomach and back.

Acute porphyria also causes peripheral neuropathy in the hands and feet. Along with the pain comes severe nausea, vomiting, headaches, fatigue, muscle weakness, motor neuropathy, and fluctuations in blood pressure and pulse. About 10 percent of AIP patients have a severe form of the disease referred to as “high excreter, recurrent attacks.”

Unfortunately, I am in that 10 percent.

Initially, I only had monthly attacks lasting 3-5 days, starting in my teenage years. Somehow, I managed to complete my education and training and became a physician despite that.

I was not finally diagnosed with AIP until the age of 39, when I suffered a life-threatening porphyria attack. It was almost too late for me at that point, as the attack was so severe that I was no longer able to work or do much at all. There is a one percent mortality rate during each AIP attack and I’ve had hundreds of them, so I’ve been lucky.

My older brother died unexpectedly at the age of 39. Genetic testing of autopsy samples later determined he had the same AIP gene mutation as I have. He died prior to my diagnosis and his gene mutation was discovered as I lay in a hospital bed being told my diagnosis.

LISA KEHRBERG, MD

At first, I felt such strong relief that my life was saved and sadness for my brother. But as the months passed, and I became sicker and more in pain, I started feeling a bit jealous of my brother. He was able to at least die with some dignity and is no longer suffering.

The pain that I experience is severe and the only thing effective enough to bring it down to tolerable levels is opioid medication. I’ve tried everything possible. Pain is a subjective experience and only the person experiencing it can know the severity and what helps to improve it.

I have difficulty understanding the response from some in the medical community, government, media and general public, who are so focused on “opioid addiction” that they are unable to see patients like me and empathize with us.

The media’s response has been extremely damaging. It seems people do not understand that addiction is a separate issue from pain management. Why is it that every time prescription pain medication is discussed, it's only in reference to addiction and the opioid epidemic? What about people like me who live with a life-threatening and severely painful disease? Not many reporters seem interested in that side of the story.

I have watched now as countless pain patients have taken their own lives due to discontinuation of their pain medication, often without any warning or consent. Physicians are not the problem in this. Physicians want to help patients. Physicians are being misled, brainwashed and even punished into thinking that prescription opioids usually lead to addiction.

Fortunately for patients like me, palliative care is a growing field and I’m so appreciative of my palliative care physician. I’m frightened for the future, not only for myself, but really for everyone. Pain affects everybody at some point in their lives. Whether it’s you, a family member or a friend -- pain will be there.

Everybody should be afraid of the direction where things are going. Even cancer patients at end of life are being denied appropriate pain treatments. Insurance companies are denying coverage for pain medications and getting away with it. I encourage everyone to please use common sense in this climate where the pendulum has swung too far in the wrong direction.

Lisa Kehrberg, MD, is a retired family practice physician who specialized in pain management. You can read more about Lisa at the American Porphyria Foundation’s website.

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.

Tips for Surviving the Rising Cost of Healthcare

By Barby Ingle, Columnist

In my 20+ years as a chronic care patient, I have had over $1 million in medical bills. By the time I pass away, it may be nearing the $2 million mark for me.

Although insurance covered most of my healthcare costs, I’ve paid tens of thousands of dollars in out-of-pocket expenses and deductibles. Chronic illness can wipe you out financially. I had to sell my house to help pay the bills. Family and friends pitched in by hosting medical fundraisers for me.

This was before I realized that I was overpaying, that I could negotiate some prices, and that there were time savers and tools I could use to help keep costs down.  Here are a few tips that I use to keep my medical expenses low.

Shop around for healthcare services. Use websites like Amino, BuildMyBod or Healthcare Bluebook to find out what your out-of-pocket costs are likely to be for an x-ray, lab test or doctor’s appointment. They can also help you choose an insurance plan that will cover the treatments you are most likely to need.

Many providers have cash prices for procedures or tests that are lower than what they charge insurers. I have even paid cash to a provider, submitted the insurance claim myself and received a full refund.

Had my provider submitted the paperwork, it would have cost me more out-of-pocket and my care would have been delayed waiting for a prior authorization.

When it comes to prescriptions, check for deals, coupons and if generic medication is available. Don't be afraid to ask. Many pharmacy chains sign contracts with pharmacy benefit managers (PBMs) that bind them not to tell a patient that the cash price would be lower, unless the patient asks first. This is known as a PBM clawback and it leads many patients to abandon their scripts because they don’t think they can afford to pick up the medication. 

Pharmacies, manufacturers and coupon companies offer discount pricing that can save you significant amounts.  Walgreen's has a prescription savings club, which can provide savings from $50 to over $100 on a 90-day supply of a medication. I primarily use Walgreen's, but if another pharmacy has a lower price for something like an antibiotic, I will go to them.

I also have my doctor sign my scripts “fill as written,” which can lower the cost of brand name medications run through my insurance card. Always check on how similar the generic is to the brand name. By law they only have to be 70% of the original formulation. The fillers used in generic drugs can vary, so things like time-released medication can work differently than the brand name. It’s important to check on this when looking at how much savings you can create. You want the generic medication to work just as effectively for you.

Walk-in clinics are becoming popular for routine care appointments. By my house there is an urgent care clinic and a Walgreen's clinic that offer online check-in so that patients can avoid lengthy waits. They call or send a text to let you know you are next, so you can head down and spend less time in their waiting room with other sick people. In major cities there are health fairs that offer free or low-cost medical services to uninsured and under insured patients.

I also utilize concierge providers through a monthly subscription. Anything the primary care provider can do in his office is included in the monthly fee, which if you pay quarterly or yearly will be even lower. Sometimes I don’t even have to go see the doctor, I can teleconference with him and he can just call in a script that I will get quicker and cheaper. I save the more expensive ER visits and specialty care for real emergencies like allergic reactions, broken bones, and other life-threatening situations I have had.

My final tip is the use of health apps that allow patients to check the prices of prescriptions, get discounts, print medical records, and store emergency information on your phone for paramedics to access. I like GoodRx and Needy Meds for finding the least expensive medications nearby. And I use HealthTune’s app for mindfulness music, which is a free streaming platform that offers scientifically researched music to support your health.  

No matter what choices you make to save money, the more organized you are with your healthcare and medical records, the better your future care will be. I’d love for you to share in the comment section what tips you use to keep your healthcare costs down.

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.

What the JAMA Opioid Study Didn’t Find

By Roger Chriss, Columnist

A recent opioid study published in the Journal Of the American Medical Association (JAMA)  evaluated pain management in patients with hip and knee osteoarthritis and low back pain.

The study by VA researcher Erin Krebs, MD, and colleagues found that “treatment with opioids was not superior to treatment with nonopioid medications for improving pain-related function over 12 months.”  

That finding was widely and erroneously reported in the news media as meaning that opioids are ineffective for all types of chronic pain.

But the most fascinating result of the study – the one not being reported -- is what wasn’t found. The 108 people in the study who took opioids for a year did not develop signs of opioid misuse, abuse or addiction, and did not develop opioid-induced hyperalgesia – a heightened sensitivity to pain.

And no one died of an overdose.

This is significant because it runs counter to commonly held beliefs in the medical profession about the risks of prescription opioids. Here are a few recent examples:

“Opioids are very addictive and their effectiveness wanes as people habituate to the medication,” Carl Noe, MD, director of a pain clinic at the University of Texas Medical Center wrote in an op/ed in The Texas Tribune.

Don Teater, MD, a family physician in North Carolina, also believes that people on long-term opioid therapy experience dose escalation, which leads to hyperalgesia. “Opioids cause permanent brain changes,” Teater told USA Today.

Krebs herself has made similar comments. "Within a few weeks or months of taking an opioid on a daily basis, your body gets used to that level of opioid, and you need more and more to get the same level of effect,” she told NPR.

But the Krebs study didn’t see any of that happen.

Krebs and colleagues closely monitored the 108 people in the opioid arm of the study, using “multiple approaches to evaluate for potential misuse, including medical record surveillance for evidence of ‘doctor-shopping’ (seeking medication from multiple physicians), diversion, substance use disorder, or death.” They also had participants complete the “Addiction Behavior Checklist” and assessed their alcohol and drug use with surveys and screening tools.

What did Krebs find in the opioid group after 12 months of treatment?

“No deaths, ‘doctor-shopping,’ diversion, or opioid use disorder diagnoses were detected,” she reported. “There were no significant differences in adverse outcomes or potential misuse measures.”

Health-related quality of life and mental health in the opioid group did not significantly differ from the non-opioid group – and their anxiety levels actually improved.  

These are observational findings in the study. They were not a part of what Krebs and colleagues were specifically trying to measure. As the study notes: “This trial did not have sufficient statistical power to estimate rates of death, opioid use disorder, or other serious harms associated with prescribed opioids.”

ERIN KREBS, MD

But they are valuable observations. They note what didn’t happen in the study. Over 100 people were put on opioid therapy for a year, and none of them showed any signs of dose escalation or opioid-induced hyperalgesia, or any evidence of opioid misuse, abuse or addiction.

Krebs told the Minneapolis Star Tribune that this “could reflect the fact that the study did not enroll patients with addiction histories, and because the VA provided close supervision to all participants during the yearlong study.”

In other words, Krebs and colleagues used an opioid prescribing protocol that achieved an admirable level of patient safety. Their approach is similar to what many pain management practices currently pursue and what the CDC and various state guidelines recommend: Risk assessment before initial prescribing and careful monitoring over time.

The Krebs study provides rare and detailed observations of what happens when people are put on long-term opioid therapy. A lot of what is claimed about dose escalation, opioid-induced hyperalgesia, and misuse or abuse didn't happen at all.

This outcome demonstrates that long-term opioid therapy can be safe and effective, and may be useful in treating other chronic conditions, from intractable neuropathies to painful genetic disorders. That’s worth reporting too, isn’t it?

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.

MS Is My Full Time Job

By Jennifer Hochgesang, Guest Columnist

I work full time. I mean really 24/7 full time.

A tremendous amount is required of me physically, mentally and ultimately spiritually. I often have to travel on short notice away from my young daughter. These trips always deplete me. And I don’t get very much sleep.

Even though I do this every single day and have for years, I’m constantly being told by pretty much everyone that I don’t really know what I’m talking about and I should listen to them.

I have to deal with big egos on these trips and quite literally they have a hand over me. I have a certain attire that I’m required to wear, and it’s not to make life easier for me, but for them. The only way I get to come home is when I nod my head in agreement and promise to continue working together on our “common” problem.

I often come back home with scars from my travels and even more often “little presents.” My daughter would like to shake them up and down, but I don’t think it’s safe so I put them up high.

The job is so exhausting that I’ve seen my doctor for medications to combat the fatigue, otherwise I wouldn’t get anything done. The extent of this is hard to explain to my friends and neighbors and they begin to make silent judgements.

These judgements grow larger when I cannot go hiking with the kids out in the sun on a 90-degree day. My job won’t let me, I say. They question it at first. But over time they just stop asking and if I see them at a school function, they will just nod my way or sometimes completely ignore me.

JENNIFER HOCHGESANG

There was one time I thought I had made a great new friend. Her daughter was in the same class as my daughter. She was super funny and had her own struggles -- some of which she began to share, so I did as well. She was very artistic, intelligent and seemed to genuinely care.

As time went on we had a couple of play dates, went out to dinner with our girls, and then out of the blue I had to go on an emergency trip. I was so frustrated and sick of them. She told me she would take my daughter to gymnastics and Girl Scouts and not to worry.

Well, it was a long trip and three days after I got home I had to go again. I didn’t share too much about my trips to her. Why would she want to hear all the boring details? But then suddenly, my friend and her daughter weren’t at gymnastics. I texted her. She had switched days. I asked her why, wondering if we could switch as well. She was evasive, and I knew then my work was too much for her.

Part of me wanted to call and scream. If this is too much for you, how do you think I feel?

I want a regular job more than anything. Sometimes it feels like people think I want this job, as if I created it myself. They don’t realize that I had no choice in the matter.  But this is what I have to do and accept that I can’t have friends like other people.

I work seven days a week all day long. As I said, my job is demanding. It requires physical endurance, mental fortitude and spiritual grounding. Just in the last month, it has set new requirements.  Now I can’t drive, and I’m stuck at home in the winter in excruciating pain.

Mentally, my job takes names from me, messes with my ability to form sentences when I speak, and how to store and retrieve memories correctly. Spiritually, my job requires a belief in something -- something to hold onto -- whether it be a God or Goddess, a dog that has passed away, or a tree outside the window.

Without that, the job will beat you up past the point of understanding. You will be left with nothing:  no friends, no family, no wife or husband, no will, and no ability to laugh at life. Ultimately it strips away your humanity and your search for happiness.

If you can ground yourself and see past the pain, the falling and the shaking, and the numbness and confusion, you will not only survive -- you will still be able to strive for meaning in your life.

I work for MS. It’s sometimes better known as multiple sclerosis. Here is my schedule:

Monday: MS
Tuesday: MS
Wednesday: MS
Thursday: MS
Friday: MS
Saturday: MS
Sunday: MS

Do you have anybody in your life that works at MS like me or is in a similar place? If they say they are unemployed, they just mean they aren’t getting paid for their work. If you could trade jobs with them, would you? If so, would you trade with me first? My daughter needs me.

Jennifer Hochgesang lives in Illinois. In addition to multiple sclerosis, Jennifer has endometriosis and trigeminal neuralgia. She is the mother of a beautifully kind and precious 7-year old daughter.

Jennifer proudly supports myMSteam, an online social network for people living with multiple sclerosis, and Living With Facial Pain, an online support group for people living with facial pain.

She wishes to thank Ann Simmons for the inspiration to tell her story.

It's a Myth America Consumes 80% of World’s Opioids

By Roger Chriss, Columnist

Getting the facts right about the opioid crisis is essential. And the claim that the United States consumes 80% of the world’s supply of opioid medication -- while having only 5% of the world’s population -- is incorrect.

This “80/5” claim is popular and persistent. Senator Claire McCaskill tweeted about it last year. Recently Consumer Safety and the Reporter Newspapers repeated it. And news organizations like The Guardian, Business Insider, CNN and ABC News have all reported the “80/5” claim as fact at various times. 

The truth is that Americans consumed only about 30% of the world’s opioid medication in 2015. And the U.S. has about 4.4% of the world’s population.  That's still a lot, but nowhere near "80/5."

So where does the claim that the U.S. consumes 80% of the world’s opioids come from? It took a little digging to find out.

In 2014, Nora Volkow, MD, director of the National Institute on Drug Abuse, submitted the following testimony to the U.S. Senate Caucus on International Narcotics Control:

"The number of prescriptions for opioids (like hydrocodone and oxycodone products) have escalated from around 76 million in 1991 to nearly 207 million in 2013, with the United States their biggest consumer globally, accounting for almost 100 percent of the world total for hydrocodone (e.g., Vicodin) and 81 percent for oxycodone."

A footnote reveals where Volkow got that information. It came from a 2008 report from the International Narcotics Control Board, which states:

“In 2008 the United States accounted for over 99 per cent of the global consumption of hydrocodone and 83 per cent of the global consumption of oxycodone.”

This ultimately seems to be the origin of the “80 percent” part of the claim. At one time, the U.S. was responsible for over 80% of the world’s consumption of one particular type of opioid medication: oxycodone.

But the numbers vary significantly for each type of opioid. According to the Global Commission on Drugs, the U.S. consumed 57.3% of the world’s morphine in 2013. And Statista reports that in 2015 the U.S. consumed 29.3% of the world’s supply of prescription fentanyl, followed closely by Germany at 23.7 percent.

The U.S. at one time did consume 99% of the world’s supply of hydrocodone. But as a Pain Medicine article by Mark Rose explains, that is because “other countries with adequate opioid access prefer dihydrocodeine or low-dose morphine to hydrocodone for moderate to moderately severe pain.”

Hydrocodone prescriptions have actually plummeted in the U.S. since 2014, when it was rescheduled by the DEA as a Schedule II controlled substance.

So what are the real numbers for opioid consumption?

As Politifact notes while debunking McKaskill’s “80/5” claim, “while the United States is clearly the largest consumer of opioids, it, at most, accounts for roughly 30 percent of global consumption.”

At present, however, there are opioid shortages in some hospitals and hospices. The Philadelphia Inquirer recently reported that morphine, hydromorphone (Dilaudid), and fentanyl — staples of pain control and sedation in hospital settings — are in short supply.

“The shortage of hydromorphone is beyond acute,” Beverly Philip, vice president of scientific affairs for the American Society of Anesthesiologists, told the Inquirer.

The shortage is due, in part, because the DEA has lowered annual production quotas for fentanyl, hydromorphone, and morphine over the last two years by 35 to 46 percent.

This demonstrates the risk of persistent false claims. As Sally Patel, MD, wrote in an excellent Politico piece about the opioid crisis: “We need to make good use of what we know about the role that prescription opioids plays in the larger crisis.”

Otherwise we’ll find ourselves awash in a false narrative while enduring very real pain.

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: An Activism Primer

By Carol Levy, Columnist

Those of us who write columns and articles, or comment and tweet about chronic pain, beat the same drum, repeatedly: The world needs to hear us. We have to make our voices heard.

Unfortunately, the most common response seems to be along the lines of “We can't.”

The reasons make sense. Pain and disability keep many of us from being able to go to a rally, representative's office or a town hall meeting. Others say “I want to make my voice heard but I don't know how.”

I'm going to take my space today to give some ideas on how.

The latest outrage is Attorney General Jeff Sessions telling the country people in pain should just “tough it out.”

Because of my eye pain, I cannot write a long letter to him. He is not someone you can access merely by going to his office. Or find him on Twitter or Facebook.

You can, however, tweet to him at the Justice Department: @TheJusticeDept or leave a comment on their Facebook page: www.facebook.com/DOJ/

I sent a tweet. I included a video about my fight and struggle to live with trigeminal neuralgia: what it is, what it has done to my life and what it has taken from me.

Do you have the ability to make a short video explaining your pain disorder and what it has done to your life?

If you have been hurt by the CDC opioid guidelines, can you tell them how? You can you tweet, for example: “CRPS has taken my life from me. Opioids have helped me to get some of it back.”

You could also tweet: “Opioids helped my chronic back pain. I was able to work, play with my kids and have a better quality of life. The CDC guidelines caused my doctor to reduce/stop them and I can no longer do those things.”

You could also find a link on the internet that describes your pain disorder and post it to Facebook: “This is what rheumatoid arthritis is. This is how the pain impacts us.”

If possible, you could also go to town hall meetings, offices or rallies where your legislators will be. I recently went to a town hall meeting on the opioid epidemic. Included on the panel were my congressional representative and one of my county commissioners. We had to submit our questions on a card rather than just ask them.

This was the second town hall meeting where my question, “How can you keep chronic pain patients safe when we are being blamed and often hurt by the actions being taken?” went unanswered.

Undeterred, I made sure to get to the congressman and the commissioner before they left the room. I made sure to come prepared with information, such as studies showing how rarely we get addicted and how the number of suicides appears to be increasing as opioid medications are being reduced or stopped.  

Two years ago, I asked my congressman if he could introduce a resolution making October 7 Trigeminal Neuralgia Awareness Day. I was told the House was no longer permitting those kinds of resolutions. Instead of throwing up my hands and walking away, I asked again the following year. This time he was able to do it.

To my astonishment, when I spoke with him the second time he remembered not only that Trigeminal Neuralgia Awareness Day was in October but some of the specifics about the condition itself.

This may help him remember us -- all of us – the next time Congress debates  the opioid epidemic. Chronic pain is more personal to him because of his encounter with me.

If at first you don't succeed is a cliché for a reason. It is worth writing, calling, visiting and emailing. The worst they can do is ignore you or say “No.” But trying another time may just get them to say “Yes.”

The tortoise didn’t give up when it looked like the hare was winning. We cannot afford to give up either.

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.

Who Benefits From My Suffering?

(Editor’s Note: This coming May will mark the one-year anniversary of Canada’s opioid prescribing guidelines, which discourage the use of opioid medication in treating non-cancer pain. Canada’s guidelines are very similar to the 2016 CDC guidelines in the United States and are having a similar impact on pain patients. Critics say the Canadian guidelines have created “a climate of fear” among patients and doctors, and may have contributed to several deaths.

Elizabeth Matlack is a 36-year old Canadian and cancer survivor who has lived with chronic pain literally her entire life. She recently wrote this open letter to Health Canada and Prime Minister Justin Trudeau.)  

By Elizabeth Matlack, Guest Columnist

June 15, 1981 was the day I was born. I cried a lot as a baby, but nobody knew why. 

Three years later, when I was old enough to talk and voice my problems, I told everyone that I couldn't sit down because it hurt too bad.  My mother knew something was wrong, but she just didn’t know what.  She took me to many doctors, only to be told that I was constipated and that laxatives would solve the problem. They didn’t.

Bless my mother’s heart, because she did not give up.  She continued taking me to doctors until a pediatrician had the good sense to do an x-ray and found a grapefruit-sized malignant tumor attached to my coccyx and spreading up my spine.  I was given a 10% chance of survival while they operated and removed the tumor. 

They would go on to remove my coccyx, and gave me over a year of chemotherapy and 28 days of cobalt radiation to what was left of my spine.   The damage done to my backside was permanent. The radiation destroyed every single fat cell, causing me to have a cavity where most have buttocks. 

Sitting is very painful for me. The best way to describe how it feels is to imagine yourself resting your elbow on a hard surface, allowing all of your weight to fall on that elbow. That is what it feels like to sit. I cannot sit or lay on any surface that is not completely cushioned.

Not only was the physical pain excruciating, there was the emotional pain of not having a butt, not being able to find any clothes that fit, and being called "No Bum Beth" in school.   

Sitting has always been the most painful thing for me, followed by  standing and walking.  The severe pain in my backside, down my right leg and up through my back is non-stop.  Every hour of every single day I am in pain so severe that it makes the most basic life functions difficult. 

ELIZABETH MATLACK

Those are the reasons that I have been in pain management for over a decade.  I have been able to create a somewhat normal life for myself using opioid pain medication. OxyContin and morphine have given me the ability to do what I love most in the world, which is.to make art and walk my dog. The chemo and radiation robbed me of my ability to have children, but they did not steal my inspiration and artistic abilities.  

I have followed all of the rules set forth by my pain doctors, keeping my meds locked up, never sharing with anyone, never asking another doctor for drugs, and passing urine drug tests each month. But none of that matters now.  

The new guidelines set out by Health Canada have caused doctors to no longer treat patients based on their individual needs, but rather as a number based on the guidelines. For 5 years I was on the same dose of OxyContin and morphine. The regimen worked well for me and afforded me the ability to create all kinds of artwork. For the most part, I had a pretty decent and comfortable life -- until the guidelines came out.

In less than 6 months, I was tapered down to less than a third of the opioid dose that I was stable on for five years. The tapering was very fast and caused immense daily suffering on my part.  I do not remember the last time I have slept more than an hour at a time.  I do not have enough pain meds to get thru 24 hours of the day no matter how I work it. Every single day is a roller coaster of severe pain and withdrawal. 

My pain specialist no longer has the ability to treat me properly and I am routinely left without any pain medication, while my GP doctor tries to treat my very high blood pressure. When my pain was being managed, my blood pressure was fine.

I know life isn't easy and I definitely know it can be unfair.  But this sort of cruel and unusual torture that I am being put through is absolutely disgusting. I keep hearing about the "opioid crisis," but the only crisis I can see is all the legitimate pain patients going untreated and suffering, because legislators have their thumb on the doctors and doctors have too much at stake to risk treating patients properly. 

Health Canada says the opioid guidelines are voluntary and were never meant for pain management doctors, but rather for general practitioners and surgeons treating acute short-term pain.  Yet the pain clinics are being raided and told to enforce the guidelines no matter who the patient is and what is wrong with them.  I do not know how much longer my body can continue in this much pain.

I want to make sure that the truth gets out there. There are far too many people suffering and being denied proper medical care. And for what? Who wins? Who is benefiting from all of my suffering?  Who?

Elizabeth Matlack is an artist and illustrator in Ontario, where she is best known by her artist pen name, Lizzy Love.

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.

Should the ‘War on Stem Cells’ Be Fought in Court?

By A. Rahman Ford, Columnist

A recent article published in the journal Regenerative Medicine suggests that civil lawsuits should be used to protect patients and draw attention to unscrupulous stem cell clinics. 

The authors, Claire Horner, Evelyn Tennenbaum, Zubin Master and Douglas Sipp, contend that civil litigation would "convincingly show patients and society that there are real and significant harms from unproven SCIs (stem cell interventions), and this strategy may complement the arsenal of efforts focused on reining in this industry.” 

Horner, Tennenbaum and Master are academics in medical ethics at Baylor College of Medicine, Albany Law School and the Mayo Clinic, respectively; while Sipp is affiliated with RIKEN, a Japanese research institute that is developing stem cell technology.

Their use of the word “arsenal” sounds like a declaration of war, an unfortunate, fratricidal war against their fellow Americans who need stem cells to treat their pain and disability.  After reading their article, it’s clear that fearmongering is their best weapon.

The authors really don’t like clinics that use a patient’s own stem cells to heal themselves.  They lament that many industrialized countries are moving toward more openness in accelerated approval of stem cells and other regenerative therapies.  And they contend that inadequate enforcement and penalties at the U.S. federal level justify the need for lawsuits.

“In the absence of government oversight of private sector firms, patients and consumers may need to look elsewhere to protect their interests. Civil litigation provides a means for patients who feel they have been harmed by undergoing a SCI to seek redress and compensation from providers and may also motivate government and industry to address the issue on a larger scale,” they wrote.

The most stupefying part is that the authors go so far as to compare the issue to tobacco companies, gun violence and child molestation! 

The authors admit at the outset that the main goal of their campaign is to propagandize the public and policy-makers.  They state plainly that “stem cell lawsuits may help raise public awareness and influence public policy” and would help draw “attention to negative outcomes and engender moral outrage on the behalf of vulnerable and sympathetic plaintiffs.” 

This tactic would shift attention away from pesky patients’ rights advocates who support broader availability of the potentially life-saving treatments offered by stem cells.  They see this strategy as viable because it worked for consumers injured by the tobacco industry, victims of gun violence, and sexual abuse victims molested by Catholic priests.  The fact that the authors would put stem cell clinics – and by extension stem cell patients – in the same category as Philip Morris, AR-15 gun manufacturers and pedophile Catholic priests is simply ludicrous.

For the authors, civil litigation is essentially a propaganda tool in their misguided war against a non-existent enemy. They advocate using civil litigation to “attract public attention” and “shape the media narrative.” Information operations such as these are an age-old concept in international relations and warfare, that includes the collection of tactical information about an adversary as well as the dissemination of propaganda in the pursuit of a competitive advantage over an opponent. 

And how do the authors intend to collect their tactical information?  They will use the civil litigation discovery process to uncover “previously undisclosed information about a provider’s practices” that could potentially trigger FDA investigations. 

Overall, the tone of the authors’ proposal is that of combativeness and belligerence, not negotiation and reconciliation.  As with all misguided wars, it is civilians – those who the war is allegedly waged to protect – are the ones who suffer the most.

Little Evidence to Support ‘War on Stem Cells’

Even worse, they don’t show their “war on stem cells” is supported by any real-world evidence.  Their methodology is insufficiently rigorous; it lacks integrity to the point of being flimsy, porous and leaky.  The data which serve as the cornerstone of the authors’ argument are 9 court cases in which plaintiffs allege that the stem cell therapy they received was either ineffective or injurious.  

This sample is far too small to seriously support any meaningful conclusions, much less the authors’ conclusion that the number of legal claims is growing.  The 9 cases cited were filed between 2012 and 2017 for a wide variety of medical conditions and for a wide variety of causes of action.

Not only are we not told how many stem cell procedures were actually performed in American clinics over the same time span, but in none of the 9 cases cited was there a disposition in favor of the plaintiffs!  In fact, one was voluntarily dismissed by the plaintiffs and another was dismissed on appeal.  Of the remaining seven, 4 were settled and 4 have yet to be decided. 

So none of the claims of negligence, misrepresentation, fraud, lack of informed consent, or unfair trade practices were ever proven.  The authors acknowledge that this is a problem, and in desperation turn to a Japanese case to support their claims.  The problem is the authors openly admit that “the U.S. administrative and legal systems differ greatly from Japan’s.”  It’s never a good idea to undermine your own argument.

If the authors are truly motivated by the safety and welfare of stem cell patients, then perhaps their efforts would be better spent advocating for the increased democratization and liberalization of stem cell policy. 

This can be accomplished by supporting policies geared toward the availability and affordability of stem cell therapies, such as the patient-centered ethos of “Right to Try” legislation, the regenerative medicine provisions of the 21st Century Cures Act, and the constitutionally-protected privacy right in a patient’s use of their own stem cells. 

We need less antagonism and asymmetry in stem cell policy-making, and more alliance-building and acceptance of a new paradigm of progress. The solution is not more litigation against people, but more listening to the people.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China.  

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.

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.