One Is the Loneliest Number

By Ann Marie Gaudon, PNN Columnist

Part of what makes pain "painful" is the feeling of being misunderstood and the feeling of aloneness.

"Nothing is quite so isolating, as the knowledge that when one hurts, nobody else feels the pain,” Robert Murphy wrote in his memoir, “The Body Silent: The Different World of the Disabled.”

When you combine a sufferer who sees only pain with someone who can't see it at all, a barrier often springs between the two.  Pain causes this barrier because it inverts our typical perspective. No longer able to reach out to others for work or leisure, pain patients turn inward and life becomes about self-protection. Something is wrong inside of us, so we must tend to it and ensure it doesn't get any worse. This is an evolutionary response for survival; it’s instinctive and quite normal under these circumstances.

Once patients are constrained in their daily activities, a large part of their social world and the emotional health that depends on it can quickly deteriorate. Relationships are arguably the largest part of what makes life worth living.  In contemporary Western society, our self-confidence and identity arise from social interactions.

But as chronic pain sufferers’ lives become more restricted and limited, they frequently experience an erosion of their former self-image without the simultaneous development of a new one.

For example, I have heard: “I was a nurse, a mother, a wife, a friend, a daughter, and a sister, but now all of that is gone and I am alone in a cage with my pain.”

When isolated and in pain, our mind can become our worst enemy. The collapse of one’s social world can result in feelings of anxiety, emptiness, loneliness, anger, sadness, grief, guilt and low self-worth.

All of this psychological stress (aka “dirty pain”) is a response to your physical pain (aka “clean pain”).

Stress is a complex cascade of physical and biochemical responses to strong emotional stimuli. Emotions are electrical, chemical and hormonal discharges of the human nervous system. When not processed in a healthy manner, they can generate or increase pain and illness.

People can and do help themselves. Some join groups. If possible, join a walking group for exercise. If you don’t like walking, join another. The point is not so much what the group is doing, but rather that you are in a social situation.

Online forums are another way that people connect, especially if one is mainly housebound. Online communication can help you feel not so alone with your pain.

Maybe it’s possible for you to open up your home to low-maintenance company. Host a popcorn and movie night, or it could be cards or board games. You do the choosing, including when it begins and ends. Start with a single and simple event to prevent over-exertion and see where it leads.

Remember, what’s important is that you are building and maintaining relationships. To the extent that it’s possible, stick with those who support you. This could mean family, friends or even a support group for your condition, which can be a platform to form meaningful relationships with people who understand you. By listening to each other, you both know that you are heard and that you are not alone.

Some folks make their pain more communicable and thus sharable through pictures, artwork or expressive writing. Oftentimes this helps to bring barriers down to help others understand how you are feeling. There are no rules, you choose your form of expression.

Finally, realize that it is not your fault that you live in a pained body. Adding self-blame to your list of challenges will only make things worse for yourself. Learn to ask for help when you need it. Asking for help is never a weakness but is an act of self-compassion. I work extensively with clients on self-compassion, most of whom are quite naïve about it. If beating yourself up were the way to better health, wouldn’t you be the healthiest person on the planet by now?

I also work with people to get realistic about their life and expectations. What can stay? What can go gracefully to make room for new ways of being?

People aren’t broken, they’re just stuck. It’s not always easy, but with new learning, adaptations and support, people also become unstuck.

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

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

My Opioid Dependency Turned into Addiction

By Jim Best, Guest Columnist

When I was in my early 40’s, I had an accident at work that injured the discs in my lower back. I tried physical therapy, but after three months of little improvement they performed a discectomy.

The surgery was successful and I had very little pain until a year later, when I re-injured the same area. I was taken to the hospital in an ambulance and a neurosurgeon decided I needed emergency surgery and performed a laminectomy. This time, the pain came back after less than six months. I was in constant pain (most days rated somewhere between a 6-8) and unable to work. 

The next ten years included numerous trips to various providers, including pain specialists. I was evaluated by orthopedists and neurologists, and informed I was not a good candidate for spinal fusion surgery due to my overall body structure. They took more than a dozen MRI’s and I was subject to painful spinal injections on a regular basis.

I was also given a discogram, which is an extremely painful diagnostic procedure involving the insertion of needles into the spinal discs. The pain was so severe from this procedure that I passed out. The results were “inconclusive.”

During those ten years I was also introduced to opiate medication. They started me off on Vicodin and I was eventually prescribed OxyContin by my regular doctor. I took relatively small doses to start, but it didn’t take too long before I was being prescribed larger and larger doses.

What I didn’t know was that the more I took, the more I thought I needed. This is known as opioid-induced hyperalgesia, a syndrome in which people can become hypersensitive to painful stimuli due to prolonged use of opioids.

Although at the time I was sure that had nothing to do with my case, now I see where it made perfect sense and I should have ceased my opiate use immediately. However, I continued to use for five additional years. 

JIM BEST

An important part of my story concerns my addiction to alcohol, which I stopped using in 2005. I was a stalwart member of AA up until 2015, when I had a relapse. I never really discussed my use of painkillers with other people because I was afraid they would think I might have a problem with pills. Of course, they would have been correct, but I fooled myself into thinking I was okay.

That is part of the self-delusion of any kind of drug use, but perhaps more so with opiates because they were prescribed by a doctor and because I felt I had a legitimate reason for using them -- a rationalization I maintained even when I was using far more than prescribed.

Looking back, I do not believe I should have ever been prescribed opioid medication due to my addictive personality. I don’t blame the doctor who prescribed them to me. I would tell her horrible stories of not being able to get out of bed without the pills, or how some days all I could do was sit in a chair and cry. I believe that as a physician (as well as a caring and compassionate human being), she was concerned with my pain and truly thought she was doing what was in my best interest.   

It’s important to make one fact clear: I was in pain. Although I certainly hyperbolized my symptoms to my doctor, girlfriend and a few others, I did have daily chronic pain. And I was dependent on the drugs to provide some modicum of relief.

There came a time, however, when the dependency turned into an addiction. I literally could not function without large doses of the drugs. I also began to abuse them by taking more than prescribed and taking them in non-prescribed methods such as snorting.

The end of my use came when I got busted by my doctor. She caught me in one of the myriad of lies I had to tell because I would run out of pills before the next prescription was due. She gave me a script for 10 Xanax and basically told me good luck.

I went through withdrawal for a few days and then, after almost ten years of sobriety, I started to drink again. Eventually, I ended up in treatment. I admitted to the counselors at the treatment center that opioids were also “sort of a problem.” Luckily, they saw through the lie and I was put on Suboxone. I still take the Subs because they help with the pain and I don’t have the urge to use anymore.

I still experience daily pain. Some days it is bad enough that I have to be very careful with how much I exert myself. But I manage to get by without the pills.

As an aside, I feel like the current restrictions being put on opioid medications are too extreme. Not everyone that takes them has a problem and by restricting them, as many states currently are, they are making life very difficult for the ones using them responsibly.

What other people do is their business. For myself, taking such medications is no longer an option. I hope this story helps someone. 

Jim Best lives in Minnesota.

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 I Be Trying to Pass as Healthy?

By Crystal Lindell, PNN Columnist

Recently my new boyfriend told me he could tell from the moment he met me that I took pain pills.

“It’s all in the eyes. They look weathered. Mostly because the pain medications affect your sleep pattern.”

“Wait. What? What does that even mean? So I look old?”

“I think it’s really attractive actually.”

Sure. 

I was a bit devastated to find out that my elaborate efforts to convince the world that I am indeed quite healthy had failed me. So much for my $48 concealer from Ulta. 

The thing is I look young and I’m relatively friendly, so people usually can’t tell that I almost always feel like someone is repeatedly breaking my ribs. And I confess that I often use this to my advantage. People at work are on a need-to-know basis.

Until I met my boyfriend, I rarely told guys about my chronic pain. And when I’m at professional events it never comes up.  Sometimes I feel a little guilty about this, as though I’m somehow reaping the benefits of being able-bodied while my actual body is falling apart.

Looking healthy means nobody ever questions my ability to get things done, show up or keep working.

But the other side of this is that when I actually need help, it’s a lot harder to get. Nobody wants to give up their seat in the waiting area for the young girl who looks like she could go out and run a marathon tomorrow. Well, fine, probably not a marathon, but I definitely look like I could easily walk a 5K.

And getting help lifting a bag, or even using a scooter at the store makes me look like I’m just some lazy blonde chick taking away benefits from the people who actually need them.

I recently covered three trade shows in three weeks for work, and the whole thing left me battered on the couch at home. But during that final week, when I finally was bold enough to just float the idea of using a scooter to get around, someone who doesn’t know about my health said, “Well that would be in poor taste.”

It’s so hard to know what to do in that moment. Do I verbally vomit up my medical history right then? Do I laugh like I’m embarrassed? Or do I just ignore it?

I chose to throw out a sentence about how I was actually in real pain and then dropped the conversation.

More moments like that are bound to come up though. And one day I will have to break down and actually use the scooter. When that happens, I’m sure I’ll get some nasty looks from people who just assume I’m too lazy to walk the trade show floor.

But I’m also sure that eventually people will be able to tell I’m sick just by looking at me. And honestly, I’m dreading that more.

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 Ehlers Danlos syndrome. 

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.

I’m Ashamed of the U.S. Justice Department

By Drew Pavilonis, Guest Columnist

I was a federal law enforcement officer with the U.S. Department of Justice (DOJ) for 14 years. Hard work, a willingness to transfer, and a graduate degree brought fast promotions and a coveted position in management at a DOJ training academy just outside of Denver.

However, a rare type of brain tumor deep in the thalamus brought everything to a sudden halt after ten years in Denver. My doctors initially said the brain tumor was inoperable due to its sensitive location, but the tumor continued to grow, and I eventually flew to Phoenix to have a talented neurosurgeon perform the difficult surgery to remove it.

The thalamus and brainstem proved to be a very challenging surgery and I suffered permanent disability because of it. I spent several months as an inpatient at a neuro-rehabilitation hospital, relearning how to walk and speak, dress and bath myself.

The DOJ medically retired me because cripples can't be law enforcement officers. Fortunately, I had 19 years of federal service and was able to retire with a pension, which was a good thing since I was not able to work due to my significant disability. 

However, the suffering didn’t end there. I developed chronic, debilitating pain 3 years after the surgery.

DREW PAVILONIS

Fortunately, at the urging of my sister, I had moved close to Duke University Hospital in North Carolina for follow up medical care. The doctors at Duke hypothesized that my pain was due to scar tissue that formed in my thalamus after the brain surgery. The thalamus is the brain's pain center and my pain “switch” had been permanently turned on.

I was bedridden and prayed for death daily. The pain was so bad that I could not walk. I was taken by ambulance to Duke Hospital for a one week stay as an inpatient and was medically tested to the extreme. Eventually, the doctors determined that I had real pain and referred me to pain management. 

I was prescribed methadone, four times a day. Additionally, to fight the debilitating nerve pain that I also have, I was put on the maximum dose of gabapentin. The medications just allow me to live, much like diabetics need insulin to survive. I am always in pain, but the medications control it to a tolerable level.

I am able to travel internationally (I write this from my hotel room in Berlin, Germany), do volunteer work, and ride an outdoor wheelchair. However, I worry that that I will someday become collateral damage in this “war on opioids.”

I cringe every time I see a journalist cite the CDC report about opioid related deaths in America. That report was full of errors and incorrect by the CDC's own admission. Also concerning are the jack-booted tactics of the DEA, which attacks legitimate pain treatment as if doctors were responsible for all the heroin in the country.

Those rogue tactics have had a chilling effect on the practice of pain management and contributed to a growing number of patient suicides. Many chronic pain patients have taken their own lives because they could not get the appropriate medication that they so desperately need to live.

I never thought I would see human rights violations conducted by my own government against fellow Americans. It is unbelievable.  I no longer tell people that I am retired from the DOJ because I am ashamed of it. I just say that I’m retired from the federal government. That's sad.

Drew Pavilonis lives in North Carolina.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

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

The Other Victims of the Opioid Epidemic

By Katie Burge, Guest Columnist

Imagine the fear, frustration, helplessness and anger you might feel upon learning that your doctor cannot treat you to the best of his or her ability because they’re afraid of being arrested. 

I don't have to imagine that because I am a chronic pain patient with a degenerative spinal condition, plus severe osteoarthritis and fibromyalgia; each of which cause severe chronic pain 24/7. Combined, they can make simple tasks like getting dressed in the morning sheer torture.

Pain patients are the other victims of the so-called opioid epidemic, the ones the media usually don’t mention unless they're blaming us for other people's drug usage. 

Patients are being forced to live in agony and, as a result, increasingly lose their lives due to catastrophic medical events, such as stroke, heart attack and even suicide.

These can all be triggered by the physical, mental and emotional pressures of trying to survive with inadequately treated chronic pain.

Why?  Because politicians and bureaucrats (who refuse to admit the government is completely impotent at controlling the proliferation of illicit drugs) have managed to sell the public on the ridiculous premise that refusing medically necessary medication to one group of people will somehow alter the behavior of another group, and handily end America's drug crisis.

This approach simply does not work. Torturing vulnerable pain patients by refusing them life-giving medication will never make the slightest dent in the illegal drug trade because, sadly, people who want to get high will find something somewhere that will enable them to do so. 

Also, most of the prescription opioids that people abuse DO NOT come from doctors or pain patients. Less than one percent of legally prescribed opioid medication is diverted.  People in true pain are not going to suffer additionally by sharing or selling their medication. And doctors are not as careless with their prescription pads as the powers-that-be would like you to think.  

Nonetheless, the entities that control doctors’ licenses to prescribe opioids have yielded to political pressure by ordering doctors to either cut back on pain medication to the point that it's ineffective or stop opioid treatment altogether, regardless of patient need or outcome.

Inadequately treated chronic pain has stolen a great deal of my independence and quality of life, and though I hate the idea of taking pain medication at all, my greatest desire is to simply be able to fully participate in my own life again.  I will never be pain free, but I long to be able to play with my grandchildren, go to the theater or sit through an entire movie (and still be able to walk back to my car).

The mainstream media is also responsible for the ridiculous narrative that opioids have no legitimate clinical use and are immediately addictive. The result of this bias and hyperbole is that most folks believe outlawing the legitimate medical use of opioids can only be a good thing. Society teaches us that pain is somehow shameful.  We must “suffer in silence” and learn to control our pain without complaint or medical intervention. 

With such an abundance of myth and misinformation, it's no small wonder that actual facts about pain tend to get lost in the mix. Please allow me to share a few:

First, many overdose deaths are made to sound as though they were caused by a single prescription or even a single dose of opioids, when they are actually the result of a mixture of different medications, street drugs and alcohol. 

Second, chronic pain affects more Americans than heart disease, cancer and diabetes combined.  And studies have repeatedly shown that less than 4% of those who take opioid medication for pain become addicted.  They might develop a dependence or tolerance, but that occurs with many medications.

Physical “dependence” simply means that, if a drug or substance is stopped abruptly, the body will react by exhibiting withdrawal symptoms.  “Tolerance” occurs over time, as the dosage of some drugs might need to be adjusted as the body grows tolerant to its effects. Neither of these conditions is unique to opioids, nor are they necessarily indicative of addiction -- which is characterized by compulsive drug seeking behavior and use, despite harmful consequences.

Personally, I believe the question of addiction simply comes down to motive.  If your primary motive in taking opioids is to get high, you might be a drug addict.  If your only motive is pain relief and once that relief is achieved you do not increase the dose, you are not a drug addict.

Drug abuse is a complex social issue that has no easy fixes.  It should not, however, be confused with the medical management of chronic pain.  All life is precious and should be valued and protected, but not at the expense of others.

So, the next time your favorite TV show has a story line about someone going to the hospital and being transformed into a raving drug addict, or you hear yet another biased news story about opioids, do something about it.  You can help save lives by contacting the source of those fallacies and insisting that they tell the whole truth about the opioid crisis. Call them. Write a letter. Send an email.

We desperately need your voice, your prayers, your empathy and your compassion.

Katie Burge lives in south Mississippi, which she calls a “a veritable wasteland” for pain treatment. 

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.

Can Stem Cells Treat Lyme Disease?

By A. Rahman Ford, PNN Columnist

In a recent article in Scientific American, author Mary Beth Pfeiffer paints a startling portrait of Lyme disease in America.  She describes the “peril and menace” now associated with many forests, parks and even some backyards -- landscapes that Lyme disease-carrying ticks inhabit in ever-increasing numbers. 

“Although children are the most frequently diagnosed group and thousands of infected patients develop long-term infirmity every year, little has been done to curb the spread of the ticks,” Pfeiffer wrote. 

According to the article, the primary reason for the explosion in Lyme disease is that mainstream medicine continues to labor under the long-disproven myth that the disease is easy to diagnose and treat.  In truth, diagnosis is complex, and treatment options are woefully inadequate and sometimes even dangerous. 

According to the Centers for Disease Control and Prevention , Lyme disease is the most common vector-borne illness in the U.S.  It is transmitted by the bite of a blacklegged tick, or deer tick, that is infected with Borrelia burgdorferi or Borrelia mayonii bacteria. 

Deer ticks tend to thrive in woody or grassy areas.  Although most cases are reported from northeastern states like New Jersey, Connecticut and Maryland, states like Minnesota and Wisconsin have also reported cases. The geographic distribution seems to be expanding, along with an increase in the number of counties reporting Lyme cases.

In 2016, there were over 36,000 confirmed or probable cases of Lyme disease, although the actual number may be ten times as high. Common symptoms include a small red bump at the site of the tick bite, which can expand into a rash that forms into a bull’s-eye pattern.  Flu-like symptoms are also common. 

If Lyme disease is left untreated, multiple symptoms may emerge which may be dermatological, musculoskeletal, neurological and/or cardiovascular in nature.  Symptoms can include severe joint pain and swelling, meningitis (swelling of the brain), paralysis, numbness, weakness of the limbs and impaired muscle movement.  These symptoms can last for months or even years.  Because they tend to mimic the symptoms of other diseases, Lyme is often misdiagnosed.

There is no consistently reliable test for Lyme disease and diagnosing it can be tricky.  Oftentimes, patients do not present with a rash or any other common symptoms.  Laboratory tests, like enzyme-linked immunosorbent assay (ELISA), which are designed to detect bacterial antibodies, can give false positives.  And the Western Blot test, used to confirm ELISA results, has no standard criteria for interpretation.

Treatment for Lyme disease is likewise problematic.  The standard course of treatment is a 14 to 21 day course of oral antibiotics.  If the patient presents with neurological symptoms, intravenous administration may be preferred.  According to the Mayo Clinic,  “after treatment, a small number of people still have symptoms, such as muscle aches and fatigue,  the cause of these continuing symptoms, known as post-treatment Lyme disease syndrome, is unknown, and treating with more antibiotics doesn’t help.”

However, many holistic practitioners disagree, contending that the number of patients with post-treatment symptoms is far larger than estimated, and an extended course of antibiotics – or other treatment modalities – may be warranted.  Several of these physicians have had their licenses revoked, faced other disciplinary actions for ethics violations, or even been sent to prison.

Stem Cells and Lyme Disease

Given that the standard course of treatment fails many Lyme disease patients, alternative therapies are needed.  Stem cells may be a viable option to treat symptoms associated with Lyme disease syndrome because they are inflammatory in nature.  Mesenchymal stem cells, which may be readily obtained from bone marrow or adipose (fat) tissue, are known to possess immunomodulatory properties.  This means they could potentially lower inflammation and resolve the stubborn persistent Lyme symptoms that refuse to respond to conventional antibiotic therapies. 

KELLY OSBOURNE

Although the evidence for the efficacy of stem cell therapy in treating Lyme disease is largely anecdotal, the stories are compelling.

In one high-profile case, former E!’s Fashion Police host and Project Runway Junior judge Kelly Osbourne details her experience with Lyme disease in her memoir.  

In 2004, Osbourne was bitten by a tick from a reindeer at her father Ozzy’s 56th birthday party.  As a result of the bite, she suffered for a decade with “traveling pain” from a sore throat and stomach aches, which eventually led to a seizure on the set of Fashion Police.

 Osbourne was later diagnosed with epilepsy and prescribed drugs that, in her words, “turned her into a zombie.”  She went from taking Ambien to Trazodone to painkillers to anxiety medication.

After visiting an alternative medical practitioner, Osbourne tested positive for Lyme disease.  Rather than try to treat the disease with antibiotics, she went to Germany for stem cell therapy.  That therapy was a success.  In her words, “I was experiencing emotions and feelings again.” 

Osbourne initially kept quiet about what she calls her “cure” because she feared retribution from pharmaceutical companies.  She has since become an advocate for stem cell therapy.

Patients suffering from chronic Lyme disease need options.  Stem cell therapy could be one of them.

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.

A Bad Bill That Won't Fight Opioid Addiction

(Editor’s note: Last month, PNN reported on the “Post-Surgical Injections as an Opioid Alternative Act,” one of dozens of bills Congress is considering to combat the opioid crisis. HR 5804 would raise Medicare’s reimbursement rate for epidurals and other spinal injections used to treat post-surgical pain. The bill – which was lobbied for by doctors who perform the procedures – has drawn little public scrutiny and was rushed through a congressional committee after one brief hearing.)

By Denise Molohon, Guest Columnist

Raising the reimbursement rate for post-surgical spinal injections would dramatically increase healthcare costs and disability rates. This is based on historical research and medical evidence.

A harmful procedure should never be considered a “standard of care” by the medical profession. Yet that is what has happened with epidural steroid injections (ESIs) and Congress is going along with it under the guise of preventing opioid addiction.

“In the United States, more than ten million epidural steroid injections are delivered each year, a number that makes them the bread and butter of interventional pain management practices,” wrote Cathryn Jakobson Ramin, author of“Crooked: Outwitting the Back Pain Industry and Getting on the Road to Recovery.” 

The National Health and Medical Research Council of Australia warned in 1994 that the risk of a dural puncture of the spinal cord during an injection was at least 5 percent. It also cautioned that “particular care must be taken if attempting an epidural injection in patients previously treated by spinal surgery.”

In such cases, an epidural steroid injection (ESI) carries a very high risk of direct entry into the subarachnoid space, which can have catastrophic consequences to a patient, including the development of Adhesive Arachnoiditis, a chronic, painful and disabling inflammation of spinal nerves. I live with that condition, along with a growing number of other patients.

“The incidence of arachnoiditis has risen about 400% in the past decade,” says Forest Tennant, MD, Editor Emeritus of Practical Pain Management.

Between 2000 and 2011, there was a staggering 665% increase in the rate of lumbar and sacral epidural injections among Medicare beneficiaries. The data also show that there were enormous increases in spinal injections performed by physical medicine and rehabilitation specialists.

“We are doing too many of these, and many of those don’t meet the proper criteria,” Dr. Laxmaiah Manchikanti told The New York Times in 2012.  Manchikanti runs a pain clinic in Paducah, KY and is chairman of the American Society of Interventional Pain Physicians – which lobbied for HR 5804 and gave campaign contributions to its sponsors. He told The Times about 20 percent of doctors who perform ESIs are not adequately trained.

The growing use of spinal injections has not resulted in better care. Dr. Richard Deyo, a professor of family medicine at Oregon Health and Science University, told the The Times that “people with back pain are reporting more functional limitations and work limitation, rather than less.”

HR 5804 is more bad policy piling on top of an already failed campaign of opioid legislation -- much of it based on misinformation provided by the CDC -- that will perpetuate the tsunami of needless pain and overdose deaths. 

It needs to stop. Today. 

When profit is one of the major motivating factors of those seeking new legislation, those creating the legislation and those lobbying for it need to be questioned. Profitability should never play a factor in any treatment plan. However, it now seems to dominate the American healthcare system from diagnosis to testing to medication. 

This needs to change.

Medicine needs to be removed from the hands of lobbyists, PAC’s, and politicians and put back into the hands of the personal physician and his or her patient. It should be as individualized and unique as the medical needs of each patient. 

It truly is that simple. 

Denise Molohon was disabled with Adhesive Arachnoiditis after multiple spinal surgeries.

Denise is a patient advocate for ASAP, the Arachnoiditis Society for Awareness & Prevention. She and her family live in Indiana.

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.

Life After Pain Meds

By Dana Stephenson, Guest Columnist

It was a warm October afternoon in 1997 when my boyfriend called and asked if I wanted to go for a ride. Being from the northeast and motorcycle season was almost coming to an end, I said sure.

I often wonder how my life would have played out if I had just stayed home that day.

It started out as a normal ride with another friend, until the friend took off down a back road. Being just 18, my boyfriend took off after him. Long story short, the road turned and we did not. We slammed head-on into a telephone pole at 85 mph. The brakes on a motorcycle don't work so well when the wheels aren't touching the ground.

I was airlifted to a hospital and was in critical condition for several weeks. I spent 10 months in the hospital and had at least eight surgeries for a fractured spine and pelvic bone, pierced colon, and bruised heart, lungs and kidney. On the outside, I only had a few scratches but I was lucky to be alive at all, considering I wasn't wearing a helmet. 

Sadly, the worst was yet to come.  I kept asking the nurses, “Where’s Mike?” The nurses would act like they couldn't hear me. I understand now they were just doing their job, but at the time I thought I was going crazy.

Three days into my hospital stay, I asked my dad the same question. He gave a simple reply, four words that I'll never forget: "He didn't make it."

Not only was this my first experience with broken bones, surgery and stitches, it was also my first experience with death.

Pain medications were necessary, along with some counseling. I made it out of the wheelchair, off the walker, and then finally the crutches. The doctors called me a walking, talking miracle.

After a few years they transferred me to pain management and I slowly began developing a new problem. To people that didn't know my story, I appeared to be normal. Pharmacists always gave me the impression that they thought I was a drug addict. Why is this young, healthy-looking girl taking such high doses of painkillers? Over the years this began to bother me more and more.

Ten years after my accident, I finally decided to get a spinal fusion, hoping the pain would go away and the social judgement would finally stop. Well, that didn't go as planned. In the 10 years since my initial fracture, I had developed scoliosis. During surgery the doctor pulled so hard on my spine, trying to get it as straight as possible before screwing it in place, he ended up re-fracturing it. Now I was in worse shape than before. 

DANA STEPHENSON

Yet a new chapter of my life began. I had to accept that at age 29, I was going to have to file for disability. After a two-year struggle they approved my application, after first denying it because of my age. That's not even legal.

After 15 years of being in pain and treated like a junkie, I had enough. It was time to get off all pain medication. I went the Suboxone route and it definitely helped with the withdrawals. After a few years I quit that too.

Of course, I'm still in a lot of pain but taking the medications again is just not worth it to me. I moved away from home, so I wouldn’t be tempted to bum pills off my old connections.

I can honestly say I haven touched a pain pill in over 5 years. It's not easy, but I'm going to be in pain with or without the pills.

Dana Stephenson lives in Florida.

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.

Wear, Tear & Care: Second Thoughts About SpineGym

By Jennifer Kilgore, PNN Columnist

I wrote a story last year about an IndieGoGo campaign for the SpineGym, an exercise device that helps people alleviate lower back pain by developing their back and abdominal muscles.

The device sells for $198 and, according to the SpineGym website, is the most successful Finnish product ever to use international crowdfunding sources.

INDIEGOGO

I received a complimentary version of the SpineGym to review, and I really, really liked it. The product itself is helpful, and I feel that it performs as advertised.

I haven’t developed a six-pack or anything, but it does seem to target some problem areas in my back that don’t get exercised enough by traditional means.

Then I started noticing some Tweets in which I’d been tagged. Thousands of people who invested in SpineGym or reserved it for loved ones are still waiting for their devices.

“Ordered a ‘spine gym’ via @Indiegogo in 2016, still have not received my ‘gym’ nor any answer. They have been anything but forthcoming, to the point of evasive. I am trying to just get an answer, but nothing but erroneous updates. Terrible,” said one Tweet.

“Bought mine for my dad. It will be two years in July. It would have helped him. Now too late,” said another Tweet.

SpineGym received an astonishing 928% in funding, almost $1.8 million. The campaign closed two years ago, and yet to date only about 200 of the 5,546 backers on IndieGogo and 2,255 on Kickstarter have received a SpineGym.

The company’s website still offers the product for sale and says that “SpineGym is used widely around the world to strengthen the core and to improve physical ability and well-being.”

‘Not Going to Put Up With This’

Meanwhile, angry backers have not received the product they were promised.

“If I hear nothing by Friday as I said, I’m putting a formal complaint in with my credit card company to get my money back,” a backer wrote on IndieGogo last week. “Not going to put up with this.”

While sites like IndieGogo are fundraising sites, not sale sites, the question must be asked: What happened to the $1.7 million raised on IndieGogo and the $460,000 on Kickstarter?

Why is SpineGym available for commercial sale but not available to backers, who’d provided money for the venture in the first place?

I sent an email to SpineGym’s customer service, asking what the problem is. Many of the individuals with whom I’ve corresponded on Twitter said they’ve tried emailing customer service and filing complaints, only to receive silence in response.

INDIEGOGO

I received a response that same day. SpineGym's explanation (with no name attached to their email) was that the initial interest far overpowered their tiny team, and that this meant “re-designing the product, re-designing the manufacturing [sic] re-planning the chain of sub-contractors processes as well as the logistic chain.” 

They also said they are currently looking for an additional customer service representative to handle the “huge amount of questions” from backers. They do state, however, they are “100% sure” that backers will receive their products, though it is taking far longer than they’d anticipated.

There is little explanation as to why such overwhelming interest warranted the entire redesign of their product. SpineGym noted delays regarding additional manufacturing issues, namely the baseplates, which were substituted with a new laminate more resistant to scratching and dirt. The company says new production samples are under final tests “at this very moment” and, if they pass review, will be shipped to backers this month.

At present, backers have little recourse aside from contacting SpineGym’s customer service and opening a claim. IndieGogo and Kickstarter have no options available, given that the campaigns have ended and all the money raised have been disbursed to the company. Technically, the campaigns were successful -- very successful -- so it’s not a matter of capital. It’s a matter of principle.

Despite my best intentions, I recommended a product that swindled backers out of hundreds of dollars. There is no reason why a plastic mat with two swiveling arms should take this long to create, regardless of redesigns, revamps, or whatever else SpineGym claims.

I will keep an eye on this situation and will hopefully have a better report soon. I recommend that backers keep up the pressure.  

Jennifer Kain Kilgore is an attorney editor for both Enjuris.com and the Association of International Law Firm Networks. She has chronic back and neck pain after two car accidents.

You can read more about Jennifer on her blog, Wear, Tear, & Care.  

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.

Roseanne Shed Light on Chronic Pain

By Barby Ingle, PNN Columnist

The reboot season of the “Roseanne” show recently wrapped up and there won't be another. Lead actress Roseanne Barr put out a racist tweet that went viral and ABC immediately canceled her show.

Although Barr’s tweet -- or ‘bad joke’ as she calls it --- was a big disappointment to her fans and everyone involved in the show’s production, I think she did some good in Season 10. It shined a light on how chronic pain can affect a patient and their family, and how important access to proper and timely mental and physical care really is.

Roseanne (both her character and in real-life) is a chronic pain patient. As a child, she suffered a traumatic brain injury. Over the years she’s shared her mental health challenges, which include nervous breakdowns and a multiple personality disorder.

"I did have a few nervous breakdowns and was hospitalized several times. It was very difficult. Fame was difficult too," Barr said in an interview with 20/20.

In a 2015 interview with The Daily Beast, Roseanne talked about using marijuana to help relieve pain.

“It’s a good medicine, you know,” she said. “I have macular degeneration and glaucoma, so it’s good for me for that because I have pressure in my eyes. It’s a good medicine for a lot of things.”

Two years ago, Roseanne began using a cane after she slipped and broke her kneecap in three places during a trip to San Francisco's Golden Gate Park. Roseanne was prescribed opioid medication for her knee injury and her real-life story was an impetus for addressing chronic pain and opioids in her show this past season. Her character also had a knee injury and used a cane.

ROSEANNE BARR

Throughout the final season, Roseanne's knee injury and chronic pain were woven into the storyline. The last two episodes were the hardest hitting. I have read articles that talk about how she was trying to share the plight of people living with addiction. I have another take on that. I believe Roseanne was actually trying to show what many pain sufferers go through because of the lack of proper and timely care.

I watched and saw a woman in real pain. Roseanne and her husband Dan worked together to overcome some of the invisible challenges of living with chronic pain. They installed an electric stair chair in Episode 3. I get this. When my husband and I chose our house, we chose one with no steps. I was still in a wheelchair at the time  and needed to get around the house without my husband’s help.

Roseanne couldn’t move to a new house due to financial challenges her TV family faced for over 20 years. She helped demonstrate how people in chronic pain must make adjustments to their living spaces to accommodate mobility.

Throughout her final season, Roseanne used a cane, went to physical therapy, and used mindfulness exercises. She even brought up that she didn’t have the money to have a procedure on her knee or to even see the doctor as often as she needed. I get that. The treatments that help me the most are not covered by my health insurance.

I have hosted personal fundraisers with family and friends to help raise the money I needed to get proper care. I’ve also had to make many appeals to my insurance company over the years. I had to find options that work for me, just as Roseanne has in both real life and as her character.

In one episode, she didn’t have enough pain pills and wondered if someone was stealing them. It turned out that Roseanne was hoarding them. She was not taking extra pills as a person with addiction would do. She was stockpiling them because she was not receiving adequate pain care and didn’t know when the pills would be cut off or how long she would need to make them last.

Two and a half million Americans live with opioid addiction, but we must never forget that 100 million will face chronic pain at some point in their lives and 30 million will need opioid pain medication. The vast majority will never abuse it.

Roseanne Barr and her show did a great job showing the limitations of our healthcare system and what happens as result of poor care. I was looking forward to next season and seeing what happened to Roseanne’s health and whether her treatment improved.

We need more media examples of what the challenges are in chronic pain and how to overcome them. I hope to see them addressed properly in future TV shows so that we change the lives of many Americans in need of better healthcare.  

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.

The Difference Between Pain and Suffering

By Ann Marie Gaudon, Columnist

It’s very easy to increase your pain and suffering. That’s not a typo. Believe me, we do it all the time. 

In my field, we use the term “clean pain” to describe something that we don’t have any choice over. Clean pain is the biological pain that science just can’t seem to fix. My clean pain is a result of disease. Your clean pain may be a result of disease or injury, or perhaps a combination. In the context of chronic pain, clean pain is unavoidable.

Clean pain is influenced by many factors and culture is one of them. For example, some African women deliver their babies in total silence due to learned beliefs. Clean pain can also be influenced by context, such as athletes who feel no pain as they push through their training and competition. Only when it is over do they feel pain and get care.

Clean pain is influenced by anticipation and previous experience. For example, you tell yourself that it’s happened this way in the past, so it’s absolutely going to happen this way again. We catastrophize (“It’s going to be awful and I won’t be able to cope!”) or we ruminate and obsess over our pain thoughts.

Grieving over the past or imagining a catastrophic future are two long highways to hell for chronic pain patients. I’ve driven on both of them. It’s not a fun ride.

Clean pain is also influenced by emotional and cognitive factors such as fear, anxiety, anger, depression and distorted thinking (“I will die from this pain!”). 

Dirty Pain

Clean pain is unavoidable within the context of chronic pain. However, what psychotherapy sees as avoidable, and completely within our control, is a second layer of struggling that we add to our pain. This second layer is called “dirty pain.” 

This dirty pain accumulates when we focus our attention on the negative thoughts and feelings about the pain, as well as the stories we tell ourselves (“I cannot live my life until I am pain free!”), and the rules we make up about the pain (“I cannot exercise in any capacity at any time with this pain”).

Some of these beliefs have a bit of truth to them, while some are arbitrary with no evidence to support them. Yet we can come to buy into them hook, line and sinker. Let the suffering begin.

Just to be clear, we absolutely must try to help ourselves with medical treatment in an attempt to alleviate our clean pain. However, there comes a time when the pain will budge no more. When we’ve reached that limit, yet continually strive to control pain that is not controllable, our efforts then become maladaptive and we suffer even more.

This metaphorical “chasing your tail” is also added to the layers of dirty pain.

We are all allotted only so much time and energy. We have a choice: Spend this time and energy trying to change the unchangeable, or engage in activities and relationships that help give you a sense of purpose and well-being.  

The goal of therapy is to help pain patients increase their repertoire of behaviours, guided by what they see as important, their own goals, and what they value in their life. This is in direct opposition to a restricted, limited and socially isolated life where pain is lord and master. By helping people to change the way they experience their thoughts, feelings and pain sensations, there is an opportunity to drop the struggle with your pain and to connect to what really matters to you.

Therapy for chronic pain management is a tool, and a good one at that, especially within a multi-disciplinary setting where you also have access to a team of other professionals. Some people with mild pain do very well using just one or two tools. However, if you are moving toward severe pain, you will need to have a larger toolkit.

My own toolkit -- in alphabetical order -- contains diet, exercise, ice packs, lifestyle modifications (e.g. strategic scheduling of work), medications, psychotherapy, rest, and a support system of family members, friends, and colleagues.

Some tools help with my clean pain while others help with my dirty pain. They all work together so that I can disconnect from struggling and connect to what matters to me. It isn’t an easy thing to do – especially at first -- but it is doable, as countless others are doing it as well.

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

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

A Pained Life: An Open Letter to President Trump

By Carol Levy, Columnist

Dear Mr. President Trump,

I have had trigeminal neuralgia, a chronic facial pain disorder, since 1976. For the last 30 years, I’ve been able to get all of the pain medications my doctors prescribed for me, including codeine, Demerol, morphine, Percodan, hydrocodone, and even an 8-ounce bottle of tincture of opium.

For the latter, I only had to go to 2 pharmacies. The first one didn’t carry it. The second store gave me the bottle with no questions asked.   I was trusted. My doctor was trusted. My doctor trusted me.

Many of us are now losing our doctors, who are fearful of being raided or arrested by the DEA because they prescribe opioids. Pain sufferers who were once able to get out of bed in the morning to work, watch their kids, and be a part of the world are joining the ranks of the disabled because opioids are being reduced or withdrawn completely.

Often patients get little or no warning when their pain management doctors decide they can no longer treat them.  Many doctors have closed their doors or decided not to prescribe opioids, no matter what the patient's condition or if they benefited from them. Often there is no rhyme or reason for this abandonment, other than fear of the DEA.

The Justice Department, CDC, VA and other federal agencies continue blaming patients and physicians for the opioid crisis, when the true “epidemic” involves illicit fentanyl and heroin. It has little to do with prescriptions.

This blaming of patients and pain management physicians has caused untold additional suffering.  The worst part is the many anecdotal stories of patients committing suicide because the opioids that were helping them are no longer available in the same dosage, if at all.

The damage is not just physical from the increased pain, there is psychological pain as well.  Sources that once may have been a comfort become accusers.

Patients tell story after story: “My family now calls me an addict because I am on opioids.”

Or they fear letting their friends know they take opioids for pain: “Then they’ll think I am an abuser or an addict.”

Yes, some doctors overprescribe and some patients abuse their opioids.  But they’re a small number. We don't sell our prescriptions and we don't give them away like candy.  We take them because they help our pain.  Often, it is the only treatment or option left to us.  We would be fools to give away, sell or abuse that which is helping. 

It is time, past time, for the "compassionate conservatism" of the Republican party be put into use. And Democrats need to show that the compassion they talk about is real.

We have enough trouble dealing with our physical pain. Please stop making it worse by taking away our medications. Let our doctors doctor us, not the government.

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.

I Wasn’t Looking for Addiction, I Wanted Pain Relief

By Denise Pascal, Guest Columnist

Five botched back operations, a cracked pubic bone and fibromyalgia led me to OxyContin 20 years ago.

I stayed with my doctor for 15 of those years, voluntarily titrating my dosage down from an initial 280mg of OxyContin a day to only 40mg.

Last June, my doctor suddenly decided to take me off opioids. I was given 6 WEEKS to get off Oxy with nothing for my pain or the effects of rapid titration off opioids. 

I now have to fight for my prescription lidocaine patches (which insurance doesn’t cover), my nightly Ambien and two lousy valiums for panic attacks.

My body is completely confused. Everyday feels like I am moving through mud. The pain is indescribable. Everyday things I could do last year on Oxy are gone. I can’t grocery shop. I can’t walk my dog. If something falls on the floor, it stays there because I can’t bend from the knees due to osteoarthritis.

For ten months I have had diarrhea, my brain is totally confused, and even simple tasks like paying bills are overwhelming. THIS IS YOUR BRAIN NOT ON DRUGS.

DENISE PASCAL

My withdrawal cost me almost $5 thousand in out-of-pocket expenses from visits to random specialists to manage my symptoms, prescriptions, and people I have had to hire to do simple errands.

This is what happens to those of us left with no family who can’t function. I am over 62 and have been legally disabled since 42. I wasn’t looking for an addiction, I was looking for relief. We were caught in a net by people who abused a drug that gave us some semblance of normalcy.

Suicide enters my thoughts often now. I can’t stand the pain. And just maybe that was the desired end result of this false narrative. 

Denise Pascal lives in New Mexico.

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’m Leaving My Spine Surgery Practice

By David Hanscom, MD, PNN Columnist

From the day I entered medical school, I wanted to be an orthopedic surgeon. I was planning on practicing internal medicine, but on a whim I applied for an orthopedic residency and, much to my surprise, was accepted.

I came out of my residency and fellowship in 1985 on fire, ready to solve the world’s spine problems with my surgical skills.

About six months ago, something shifted deep within me. In the three decades I’ve practiced spine surgery in the Seattle area, I’ve tried to address the whole patient. But I didn’t yet have a clear idea about all the factors that affect a person’s physical and mental health.

In fact, for the first eight years of my practice, I was part of Seattle’s movement to surgically solve low back pain with lumbar fusions. A new device had been introduced that ensured a much higher chance of a successful fusion. Our fusion rate for low back pain was nine times that of New England’s. I felt badly if I couldn’t find a reason to perform a fusion.

Then a paper came out in 1993 documenting that the success rate for fusion in the Washington Workers Compensation population was only between 15 to 25 percent. I had been under the impression that it was over 90 percent. A lumbar fusion is a major intervention with a significant short and long-term complication rate. I immediately stopped performing them.  

I also plunged into a deep abyss of chronic pain that many would call a burnout. I had no idea what happened or why. I had become a top-level surgeon by embracing stress with a “bring it on” attitude. I was fearless and didn’t know what anxiety was.

What I didn’t realize was that my drive for success was fueled by my need to escape an abusive and anxiety-ridden childhood. I was a supreme master of suppressing anxiety until 1990, when I experienced a severe panic attack while driving on a bridge over Lake Washington late one night.

Although I was skilled at consciously suppressing my anxiety, my body wasn’t going to let me get away with it. Anxiety and anger create a flood of stress hormones in your body. Sustained levels of these hormones translate into over 30 possible physical symptoms. I descended into a 13-year tailspin that almost resulted in my suicide.  

DAVID HANSCOM, MD

I can’t express in words how dark my world became. I experienced migraines, tension headaches, migratory skin rashes, severe anxiety in the form of an obsessive-compulsive disorder, burning feet, PTSD, tinnitus, pain in my neck, back and chest, insomnia, stomach issues, and intermittent itching over my scalp.

In 2002, I accidentally began my journey out of that dark hole by picking up a book that recommended writing down thoughts in a structured way.  For the first time I felt a shift and a slight decrease in my anxiety. I learned some additional treatments and six months later, I was free of pain. All of my other symptoms disappeared.

I began to share what I learned with my patients and watched many of them improve. Addressing sleep was the first step. Slowly I expanded it to add medication management, education about pain, stress management skills, physical conditioning, and an improved life outlook.

I still didn’t know what happened to me or why. Then in 2009, I heard a lecture by Dr. Howard Schubiner, who had trained with Dr. John Sarno, a physiatrist who championed the idea that emotional pain translates into physical symptoms.

Within five minutes of the beginning of Dr. Shubiner’s lecture, the pieces of my puzzle snapped into place. I realized that sustained levels of stress hormones can and will create physical symptoms. I also learned how the nervous system works by linking current circumstances with past events. If a given situation reminds you of past emotional trauma, you may experience similar symptoms that occurred around the prior event.

I felt like I had been let out of jail. I’ll never forget that moment of awareness.

What’s puzzling is that these concepts are what we learned in high school science class. When you’re threatened for any reason, your body secretes stress chemicals such as adrenaline and cortisol. You’ll then experience a flight, fight or freeze response, with an increased heart rate, rapid breathing, sweating, muscle tension and anxiety. When this chemical surge is sustained, you become ill. It’s been well documented that stress shortens your life span and is a precursor of chronic diseases.

Modern medicine is ignoring this. We are not only failing to treat chronic pain, but creating it.

Spine surgeons are throwing random treatments at symptoms without taking the time to know a patient’s whole story.  It takes just five minutes for a doctor to ask a simple question, “What’s going on in your life over the last year?” Answers may include the loss of a job, loved one, divorce, or random accident. The severity of their suffering is sometimes beyond words. But once we help them past this trauma, their physical symptoms usually resolve.

What has become more disturbing is that I see patients every week who have major spine surgery done or recommended for their normal spines. It often occurs on the first visit. Patients tell me they often feel pressured to get placed on the surgical schedule quickly. At the same time, I am watching dozens of patients with severe structural surgical problems cancel their surgery because their pain disappears using the simple measures I’ve learned.

I love my work. I enjoy my partners as we help and challenge each other. My surgical skills are the best they’ve been in 30 years. My clinic staff is superb in listening and helping patients heal. I’m also walking away from it.

I can’t keep watching patients being harmed at such a staggering pace. I have loved seeing medicine evolve over the last 40 years, but now I feel like I am attempting to pull it out of a deep hole. I never thought it would end this way. Wish me luck.

Dr. David Hanscom has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery. In his book Back in Control, Hanscom shares the latest developments in neuroscience research and his own personal history with pain.

More information can be found on his website.

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

The Grim Future of the Opioid Crisis

By Roger Chriss, Columnist

The opioid crisis continues to be misunderstood. In a speech last week in Tennessee, President Trump said the nation was making progress “getting rid of the scourge that’s taking over our country.”

“The (opioid prescription) numbers are way down. We’re getting the word out — bad. Bad stuff. You go to the hospital, you have a broken arm, you come out, you’re a drug addict with this crap. It’s way down. We’re doing a good job with it,” Trump said.

Indeed, prescription opioid levels are falling. In that sense, and only that sense, the numbers are down. But addiction stemming from medical treatment was never a significant factor in the crisis to begin with. A new review from the British Journal of Anesthesiology found that opioid dependence or abuse occurs in less than 5 percent of patients prescribed opioids for pain.

By most other measures, the opioid crisis is rapidly getting worse. The number of people addicted to heroin is rising, the number of ER admissions for overdoses is increasing, and the number of fatal overdoses from all drugs -- legal and illegal --  has skyrocketed to nearly 64,000 a year.

Drug deaths linked to illicit fentanyl and heroin now outnumber those from prescription opioids, as do overdoses involving medications used to treat depression and anxiety.

The CDC, DEA and FDA increasingly recognize that illegal drugs, including diverted prescription opioids, are the key features of the current crisis. But stopping this flow has become a nightmarish challenge.

The significance of illicit fentanyl in the crisis cannot be underestimated. Fentanyl is spreading throughout the black market as an adulterant or ingredient in counterfeit pills, cocaine, heroin and other illicit substances. The National Institute on Drug Abuse estimates there are 15 to 30 different fentanyl analogues circulating in the drug supply. Fentanyl is so potent it is usually shipped in such minute amounts that detecting them in vehicles, the mail, or FedEx and UPS shipments is close to impossible.

Online drug markets serve as middlemen who find customers for illicit manufacturers in China and distributors in Mexico and Canada. No cartels, street corner dealers, or vats of drugs being snuck across borders. Just high-speed Internet connections and cryptocurrencies. 

“This is what makes the opioid crisis so unique and dangerous,” Peter Vincent, who led international operations for Immigration and Customs Enforcement (ICE) during the Obama administration, told The New York Times. “Traditionally, law enforcement has focused on large quantities of drugs like marijuana and cocaine. But very small amounts of opioids can bring tremendous profits.”

In other words, we are fast approaching a point at which supply-side interventions will be virtually pointless. Back in the 19th century, we could control the supply of morphine. In the 20th century, we could, to some extent, control the supply of heroin. But in the 21st century, we can’t do the same for fentanyl and its chemical cousins.

Even if borders and ports are secured, fentanyl can be manufactured inside the U.S. And if the Postal Service and commercial couriers like FedEx are closely monitored and inspected, private networks and ad hoc distribution systems -- the modern equivalent of old bootlegging operations -- can move drugs around the country with ease.

Thus, a bill that would impose a national 3-day limit on opioid prescriptions for acute pain, as proposed by Sen. Robert Portman (R-Ohio), is off target. And efforts to combat the opioid crisis by using aromatherapy in ambulances are naive at best.

Instead, drug addiction treatment in the form of medication assisted therapy (MAT) needs to be available everywhere. Medications like methadone have existed for decades, but as David Courtwright notes in his book “Dark Paradise” on the history of opioids in America, methadone "never emerged as a coherent national response to heroin addiction.”

The national response is still not coherent. There is little interest in developing an infrastructure to treat people with substance use disorders or programs to reduce the risks of addiction. Instead we see a continuing, misguided focus on prescription opioids as both the cause and solution. Until that changes, the future of the crisis remains grim.

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.