Southern States Identified as Opioid Hotspots

By Pat Anson, Editor

If you suffer a sprained ankle, you’re 14 times more likely to get opioid pain medication at a hospital emergency room in Arkansas than one in North Dakota. That’s one of the unusual findings uncovered by researchers at Penn Medicine, who found a wide variability between states in opioid prescribing for a relatively minor injury.

Researchers analyzed private insurance claims for over 30,000 patients who visited hospital ERs in the U.S. for an ankle sprain from 2011-2015.

Nationwide, about 25% of the patients received an opioid prescription, with the chances of getting an opioid in Arkansas (40%) much better than in North Dakota (2.8%). The states with the highest prescribing rates were in the South and Southeast; while the lowest prescribing states were in the upper Midwest and Northeast.  

SOURCE: PENN MEDICINE

"Although opioids are not - and should not - be the first-line treatment for an ankle sprain, our study shows that opioid prescribing for these minor injuries is still common and far too variable," said M. Kit Delgado, MD, an assistant professor of Emergency Medicine and Epidemiology at Penn, who was lead author of the study published in the Annals of Emergency Medicine.

"Given that we cannot explain this variation after adjusting for differences in patient characteristics, this study highlights opportunities to reduce the number of people exposed to prescription opioids for the first time and also to reduce the exposure to riskier high-intensity prescriptions.”

Nearly two-thirds of the opioid prescriptions were for hydrocodone – a potent painkiller that was reclassified as a Schedule II controlled substance in 2014 to make it harder to obtain.

Most patients received only a 3-day supply of opioids for their ankle sprains, although 5% were given more than 30 tablets. Less than 1% of the patients were still getting opioid prescriptions 30 days after the initial one.  

The study period preceded the release of the CDC’s opioid guidelines and came before many states enacted laws that limit the supply of opioids for acute pain. Some health experts are calling for more specific guidelines for ankle sprains and other health conditions.

"There is a clear need for further impactful guidelines similar to the CDC guidelines that outline more specific opioid and non-opioid prescribing by diagnosis," said senior author Jeanmarie Perrone, MD, a professor of Emergency Medicine and director of Medical Toxicology at Penn Medicine.

"Medical, surgical, and subspecialty societies should convene to propose best practices similar to the popular 'Choosing Wisely' campaign, acknowledging that pain management for most diagnoses can be accomplished with non-opioids. And certainly, ankle sprains are a model example."

Alabama District Leads Nation in Opioid Prescribing

A recent study published in the American Journal of Public Health also found high opioid prescribing rates in the South, Appalachia and rural West.  Researchers at the Harvard T.H. Chan School of Public Health focused on opioid prescribing in congressional districts, rather than the state or county level.

"It is important for public health research to focus on geographical units such as congressional districts as it allows for elected representatives to be more informed about important issues such as the opioid epidemic. Because a congressional district has a named elected representative, unlike say a county, it brings a certain degree of political accountability when it comes to discussing the opioid epidemic," said S. V. Subramanian, professor of population health and geography.

The study found that Alabama's Fourth Congressional District had 166 opioid prescriptions per 100 people, the highest rate of any district in the nation. Congressional districts in Kentucky, Tennessee, Mississippi, Arkansas, Virginia, and Oklahoma rounded out the top ten areas with the highest prescribing rates. Other high prescribing rates were found in districts in eastern Arizona, Nevada, northern California, rural Oregon, and rural Washington.

The Republican congressman who represents Alabama’s 4th District said the opioid crisis is worse in rural areas because there are fewer jobs and opportunities.

“I think this crisis, particularly in rural America, corresponds directly to President Trump’s popularity in my district,” Rep. Robert Aderholt said in a statement. “People here have felt left behind and have seen their jobs and opportunities disappear. Due to the epidemic of depression, some people have turned to prescription drugs to dull the pain.  However, I believe that President Trump’s renewed focus on these areas and increasing jobs has resonated here strongly.”

Harvard researchers say the lowest opioid prescribing rates were concentrated in congressional districts in urban areas, including Washington, DC, New York, Boston, Atlanta, Los Angeles, and San Francisco.

I Have to Drive 6 Hours for Pain Care

By Bailey Parker, Guest Columnist

I feel so alone and isolated. There have been times I wanted to die, but my 5-year old son keeps me going. I get up every day for him.

About two years after he was born, I had a car wreck. I hit a coyote at 60 mph and ripped the radiator off my car. The doctors told me I had the spine of an 80-year old and needed a double level fusion in my neck.

I was 34 then and in tremendous amounts of pain. But after reading online stories in spine health forums, I was skeptical about the surgery. Everything told me to wait. So I did, for a year. I saw three surgeons and a neurologist. They all told me to have the surgery.

I live in a small city in southwest Colorado. When it comes to opioid pain medication, all the doctors here seem to have taken the stance, “We just don’t do that here.” The nearest city is Albuquerque, New Mexico, which means a 4-hour drive for me across state lines, or a 6-hour drive to Denver over mountain passes.

Before my surgery, one of the doctors of orthopedic medicine prescribed my pain medication. For two months, I was able to work again and was beginning to get back on my feet. I remember thinking at the time that I didn’t want to take medication for the rest of my life, but the fusion sounded worse.

The third month in I called for a refill of my medication. They told me no, but wouldn’t say why or give me a follow up exam with the doctor. He was too busy and couldn’t see me for a month. I waited one excruciating month and went to see him, asking what happened.

BAILEY PARKER

He had looked at my prescription records and saw a prescription for narcotics from another doctor for when I had cystic fibroids on my ovaries. It was not the same pain medication as what he prescribed me, and I didn’t even know they were the same type of medicine.  

Even though I had a broken neck, he did not feel comfortable prescribing to me anymore. His office then took 6 months to get my medical records sent to my primary care doctor. I had to physically go in and yell at them that I was about to have major surgery. This was the first time I felt treated like an addict, but not the last.

I went to my primary care physician and explained what happened with this other doctor. We have a very good relationship. She knows all of my medical history. She handled my pain medication before my surgery but was very clear that she would not do it for an extended period.

I never take more medication than prescribed. I am not an addict. I do everything they tell me. I was walking and doing yoga every day, just as the doctors recommended. I took my vitamins and a fruit shake every day.

After the fusion surgery, things just didn’t feel right. I was in tremendous pain again and this time there was more of it in different places. I told the physician’s assistant at my surgeon’s office and he told me to just get off all the drugs. He said it would help. He told me I would be fine. I wasn’t.

I struggled for another month before I demanded to see the surgeon. He told me I would benefit from OxyContin and gave me a week’s supply. For the first time since my accident, I was able to work and properly care for my son. My depression lifted. But when I called to tell them that I was doing good on the medication, they said it was time to go back to my primary care doctor and any further medication would have to be prescribed by her.

I went to see her, but she still did not feel comfortable handling my care and referred me to a pain clinic 6 hours away. I was in despair, thinking that I had crippled myself for life and would lose my job, my son and my husband. All of these relationships were strained at this point.

The pain clinic helped me get my life back. They are compassionate and good to the people that come through their doors. It’s a common misconception that pain patients want to take medication. We don’t. We just want some of our lives back and pain medication helps us have that.

A year after my fusion, the surgeon met me again. The fusion had failed, and he wanted to do a revision that would be more painful than the first. He also told me he thought my pain might be caused by fibromyalgia. I’ve never been so angry. I have pain because of my broken neck. Pompous arrogant doctor with no aftercare.

Here is my dilemma, I’ve gotten better care in a big city, where they do not treat me like an addict. I’ve gotten my life back. At first, I was able to go there every three months to get my medication, but with the laws changing, they now say I have to go every month. Driving 6 hours both ways with a 5-year-old and a broken neck is hard. But quality of life and pain are great motivators.

My experience has left me with so much anger towards doctors in my area. It seems their Hippocratic oath has been trumped by the opioid crisis and fear of administrative action. I do not tell people about the medication that helps my quality of life for fear of judgement and stigma. Unless they have been through chronic pain, they simply don’t understand.

I wouldn’t wish this on my worst enemy.

Bailey Parker lives in Colorado.

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.

What Back Pain Sufferers Should Know

By Doug Beall, MD, Guest Columnist

Allow me to describe a common patient referred to my office. Their back pain has been around long enough to be chronic and anti-inflammatory pills no longer dilute the pain.  Good days are when the patient is able to leave the house and painfully make it through eight hours at work; bad days are when the only endurable position is to lay flat at home all day.

Learning to live with the pain is no longer an option, so his physician refers him to my office. Let's pause the story here.

This sequence has been the experience of countless patients suffering from back pain. After months — sometimes years — of what feels like a 10 on the pain scale, these patients are willing to do almost anything to make the pain go away.

By the time they come to the doctor, most have done their research and have already written their own prescription, concluding that invasive surgeries and painkillers are the only options strong enough to alleviate their pain. But how did we get to the point where the all-out attack option seems like the only option?

As a doctor who specializes in treating patients for back pain, here’s what I wish more patients suffering from chronic pain knew.

When it comes to strong painkillers and increasingly invasive surgeries, bigger is not better. While surgery is the right option for some, the culture of pain management in the United States has produced the myth that the more invasive and aggressive the technique, the more effective it is. This over-reliance on aggressive techniques, especially opioids and invasive surgeries, puts last resorts at the front of the line while ignoring a range of safer and frequently more effective treatments — injections, vertebral augmentation, stem cell therapy or radiofrequency ablation, to name a few.

Simply put, the more aggressive and invasive techniques have not demonstrated that they produce better results. People aren’t automobiles. Our bodies can’t be put back together quickly or without some downside from surgery. While the more invasive repair may be better for your car, when it comes to people, the less invasive the technique, the better the patient recovery will be.

The primary consequence of the bigger is better mentally has produced a dangerous dependence on opioids for treating non-cancer pain and post-surgical pain. Opioids may be necessary for a relatively comfortable recovery after surgery, but normally not for more than four to six weeks. Recent research published in the Journal of the American Medical Association (JAMA) estimates that six percent of patients prescribed opioids after surgery become persistent opioid users. Chronic opioid use has ruined countless lives, so any treatment relying on opioids should only be considered a last resort.

Furthermore, it’s not clear that invasive surgeries are effective for patients. As an example, one of the most common pain management procedures is lumbar spinal fusion surgery, which is often used to treat chronic lower back pain. A new study from the medical journal Spine indicates 20 percent of patients undergo another operation within four years of an initial spinal fusion. Patients can only hope they’re not the unlucky one out of five sitting in the doctor’s waiting room who will be back for a second operation.

Pain sufferers should know that the vast majority of their chronic pain could be helped with simple, less invasive procedures without having to make an incision. When patients are referred to my office, I start with the least invasive options before moving on to surgery and more definitive techniques.

Instead of having patients go under the knife and prescribing them opioids, many of my patients suffering from chronic lower back pain have experienced tremendous results with radiofrequency ablation, which uses radiofrequency energy to deactivate a nerve that transmits pain from a patient’s lumbar disc.  This procedure can be done with a needle during an outpatient visit, and it often provides instant relief that can last for years.

Other procedures include epidural steroid injections (ESIs) and vertebral augmentation surgery. Both are minimally invasive options that help relieve acute and chronic pain.

Epidural injections relieve a variety of conditions, including sciatica, herniated discs and spinal stenosis. During an ESI, a surgeon or interventional pain physician injects a local anesthetic and a steroid into the epidural space, providing swift pain relief for the region. While this relief only lasts for a few weeks or months, it provides patients with enough time to continue working on their physical therapy and for the underlying pathology to heal.

Vertebral augmentation is an injection of a cementing agent into a vertebra in order to stabilize a vertical compression fracture (VCF). VCFs can result in severe deformity and extreme pain, and vertebral augmentation can help fix this injury with minimal complication or risk.

For patients suffering the disabling effects of chronic back pain, it’s important to know there are alternatives to opioids and invasive surgeries; not only radiofrequency ablation, but a whole range of minimally-invasive techniques. In the end, surgery may be necessary — but for many, these other options will prove to be not only safer, but also more effective.

(Editor’s note: For another view on ESI’s and their risks, see Dr. Margaret Aranda’s column, “5 Things to Know About Epidural Steroid Injections.”)

Dr. Doug Beall is a Fellow of Interventional Pain Practice, a Diplomate of the American Academy of Pain Management and is the Chief of Services at Clinical Radiology of Oklahoma, specializing in interventional musculoskeletal 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.

Modified Botox Could Treat Chronic Pain

By Pat Anson, Editor

Injections of botulinum toxin -- more widely known as the brand name Botox -- have long been used as a cosmetic treatment that reduces wrinkles by causing muscles under the skin to relax. British researchers say a modified version of that same neurotoxin could someday be used to treat chronic pain.

In a study published in the journal Science Translational Medicine, scientists reported that they had deconstructed the botulinum molecule and reassembled it with a strong opioid called dermorphin to make "Derm-BOT" – a compound that blocks pain signals from neurons in the spinal cords of mice.

“Injected into the spine, Derm-BOT relieves chronic pain – such as that caused by nerve damage – and avoids the adverse events of tolerance and addiction often associated with repeated opioid drug use,” said co-author Steve Hunt, PhD, a professor in cell and developmental biology at University College London (UCL).

“It doesn’t affect muscles like the botulinum toxin used to reduce wrinkles but it does block nerve pain for up to four months without affecting normal pain responses. It really could revolutionize how chronic pain is treated if we can translate it into clinic."

So far, Derm-BOT has only been used on laboratory mice, so don't expect it to be available for humans anytime soon. Over a five year period, 200 mice were treated with a single injection of either Derm-BOT, SP-BOT (another modified botulinum molecule) or morphine. The behavior of the mice was observed to track their response to pain.

“Both SP-BOT and Derm-BOT have a long-lasting effect in both inflammatory and neuropathic pain model, successfully silencing neurons without cell death. We were impressed to see that one tiny injection was enough to stop chronic pain caused by inflammation and nerve damage for at least a month," said lead author Maria Maiarù, PhD, a research associate at UCL. “A single injection of Derm-BOT reduced mechanical hypersensitivity to the same extent as morphine."

Previous studies in rats and dogs show that injections of tiny amounts of toxic substances into the spine kill neurons responsible for chronic pain. In contrast, scientists say Derm-BOT does not kill neurons, is safe to manufacture and non-toxic. And although it is partially made with an opioid, it is not addictive and doesn't cause respiratory depression.

"Injected into the spine, Derm-BOT relieves chronic pain -- such as that caused by nerve damage -- and avoids the adverse events of tolerance and addiction often associated with repeated opioid drug use," Hunt said.

Botox injections are already used to treat conditions such as migraines, neuropathic pain, and some allergies. But those injection are made into the skin and muscles, not directly into the spinal cord.

Medical Cannabis Saved My Life

By Tammy Malone, Guest Columnist

People are talking about the addicts who are overdosing due to the opioid epidemic. Maybe we should start talking about the people who take opioids just to be able to function in life. 

Chronic intractable pain is a terrible way to live.  I know from experience that when you live in that much pain, you get to a point where all you can see is the ultimate way out.  Chronic pain is blinding.  It blinds you from life, family, joy and happiness.  It robs you of your hopes and dreams, until you are left withering, suffering and asking yourself, "Is this all my life is ever going to consist of? Living in so much pain?"

Too many of us are forced to live this way. For some, it is just too much to bear and suicide is our only way out.  

I can honestly say I have thought of this.  I was in so much pain I was contemplating suicide. Then I found a compassionate, caring group of doctors at a Tennessee pain clinic and my life was spared.  I was given shots, acupuncture, and massage.  I started an anti-inflammatory diet that helps slow down the destruction of Lyme disease, which is breaking down the joints and bones in my body. 

I was also put on a manageable dose of the opioid medication Demerol.  For 6 years, I had my  dreams back. I could see a future filled with family, friends,  joy and happiness. 

My body is still breaking down and nothing is going to change that.  I'm 53 and have the spine of a 90 year old.  I've shrunk over half an inch due to the discs deteriorating in my back. I've had 3 discs removed and my spine fused. Both knees are bone on bone.  My hip joints have deteriorated and my shoulders are blown out. I have fluid pockets in many of the joints, so it's not only painful but difficult to move. 

This destruction is not going to stop or get better, and I don't care how many Tylenol you throw at it,  it won't touch the pain.  But the pain management clinic helped me exist.  The opioids helped me function  and have a life beyond the blinding pain.  It gave me another 2,372 days with my family and friends. 

TAMMY MALONE

Then came the War on Opioids. My doctor discussed the issues this war was having on his practice and what it meant for his patients. What it was going to ultimately mean for me.  To say I was in a panic is an understatement.  The thought of returning to a life in that much pain was unfathomable. 

I knew I had about 6 months before the do-gooders and Big Brother were going to push my doctor to start tapering me down. We discussed the other options, which we had or were already doing, and I cried.  I knew what was coming.  An unacceptable existence. 

This was the same time my parents had talked about getting me and my husband a plane ticket to Montana for a mini-vacation at our family cabin in the Rockies.  I really thought it was going to be my last family vacation. Because in a year,  I wouldn't be around. Suicide was already in my forethought. 

Although the stress of it all had begun to increase my pain levels, I agreed to go.  The night I stepped off the plane, my ankles swelled to the size of my calves and I couldn't walk. In 11 days at the family cabin, I lost 22 pounds due to inflammation,  elevation and the dryness of the mountain air. But I enjoyed the vacation and was happy I went. 

I also learned that Montana was a medical marijuana state.

Over the next couple of weeks back home in Tennessee, I asked my entire team of doctors, seven in all, what they thought about medical cannabis. With the exception of my neurologist, they all agreed it might be an option.  So we sold our dream property, got rid of our horses, sold everything in Tennessee and moved to Montana.  

Starting Medical Cannabis

I'd like to say everything is 100% better, but that wouldn't be accurate.  Moving to Montana and starting medical cannabis has been a challenge.  After an incredibly stressful time of trying to find doctors who would even look at my medical records, I was able to find a compassionate doctor in Helena named Dr. Mark Ibsen.  He went over my medical history, looked at my extensive list of medications, and reviewed my medical folders, MRI's and x-rays. After an hour of discussion, he agreed to take me on.  I cried with relief.  He was my lifeline.

It took 6 months to taper me off my pain meds and reduce the other 44 pills I took everyday down to 7.  Trying to find the right strain of medical cannabis hasn't been easy. I don't like to feel high or drugged (Demerol never made me feel that way), and finding the proper dosage of cannabis has been a challenge. 

Cannabis doesn't relieve the pain completely. While Demerol kept the pain manageable at a 3-4 level, cannabis keeps me at a level 6, which is uncomfortable most days.  Occasionally,  when I overdo things,  I can spend 24 to 36 hours at a level 8.5. Those are the days I wish I was still taking the opioids or at least had them as an option.

All in all, I was lucky.  I was lucky my parents thought to give me a vacation that unexpectedly showed me there was another medical option. I was lucky my husband agreed that we should sell everything and try Montana.  I was also lucky to find a compassionate doctor. It saved my life. 

But I also think about all the other pain patients who do not have options.  The "War on Opioids" has become a "War on Pain Patients."  I did some research and found the opioid overdose numbers being publicized include all overdoses from heroin.  These are addicts who are dying, not pain patients.

Not too long ago, I had a supposed friend call me an addict because she had preconceived idea of how I was living my life.  That taking pain meds to function made me the same as her opioid-addicted son, someone who did whatever it took to get his fix.  She hurt me and it cost a friendship, but it also made me see that too many of us are getting labeled.

Things need to change.  We need to be heard and we need to tell our stories.  We don't need to have people in Washington, DC leave us with suicide as the only option of living a pain free life. Too many of us are dying as it is.  Please leave our pain management doctors alone as they are our lifeline to the future. 

Tammy Malone lives with complex late-stage Lyme disease and Bartonella, a bacterial infection of the blood vessels. Both are spread by ticks. Tammy was first bitten by a tick in 2008.

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.

Learning About Back Pain Helps Reduce It

By Steve Weakley

A new study published in JAMA Neurology shows that learning about the neuroscience of pain may help relieve some of it. 

Researchers have long understood that pain sensitivity varies from patient to patient, and there is a complex relationship between the mind and the body that influences how we experience pain. To explore that connection, researchers in Belgium divided 120 patients with chronic back and neck pain into two groups. A control group was treated with commonly recommended physical therapy and exercises.

The second group went through a program of “neuroscience education therapy,” in which they were given a very detailed explanation of what happens to the nervous system during chronic pain. Patients learned how neurons and synapses work, and how pain signals travel through nerve fibers, to the spinal cord and then the brain.

They were also taught the importance of self-care, ergonomics, stretching and fitness.

The patients were then given a series of challenging movements and exercises that gradually became more difficult and painful. They were encouraged to push through their pain, continue exercising and concentrate on functionality, not pain relief.

Treatment in both groups lasted three months, and the patients were re-evaluated after six months and a year. 

Researchers say patients in the neuroscience therapy group showed markedly more progress than the control group.  They had significant improvement in their disability, a higher pain threshold, improved physical and mental functioning, and 50 percent less self-reported pain than the control group. That improvement continued even after one year.

“These positive effects can be attributed to the content of the experimental treatment as participants learn to put pain into the right perspective, to move regularly, and to be physically active. Consequently, participants probably feel empowered, whereas, previously, they viewed pain as a life-controlling factor,” researchers found.  

“The main message is: Don’t be afraid of the pain,” lead author Anneleen Malfliet told The New York Times. “We know that worrying and giving attention to pain ultimately increases it. Staying active and moving is better than rest when it comes to chronic back and neck pain.”

Low back pain is the most common cause of disability worldwide and it is the most often cited reason for missed work in the United States.  More than half of all working Americans experience back pain each year.

Positive Findings for New Osteoarthritis Drug

By Pat Anson, Editor

Pfizer and Eli Lilly have announced positive findings in treating osteoarthritis pain with an experimental non-opioid drug that has a history of safety concerns.  

Tanezumab is a humanized monoclonal antibody that targets nerve growth factor (NGF), a protein that increases in the body because of injury, inflammation or chronic pain. Tanezumab binds to NGF and inhibits pain signals from muscles, skin and organs from reaching the brain.

In the 16-week clinical study, osteoarthritis patients who were given two injections of tanezumab had significant improvement in their pain, physical function and assessment of their symptoms compared to a placebo. Osteoarthritis is a joint disorder that leads to thinning of cartilage and progressive joint damage.

“There is a substantial need for innovative new treatment options for osteoarthritis, as many patients are unable to find relief with currently available medicines and continue to suffer,” Ken Verburg of Pfizer Global Product Development said in a statement.

“We are encouraged by these results, which speak to the potential of tanezumab as a non-opioid treatment option for pain reduction and improvement in physical function.”

Preliminary safety data showed that tanezumab was generally well tolerated, with about 1% of patients discontinuing treatment due to adverse events. Rapidly progressive osteoarthritis was observed in about 1.5% tanezumab-treated patients, but none in the placebo arm.

The U.S. Food and Drug Administration granted “fast track” designation to tanezumab last year to help speed its development as a new treatment for osteoarthritis and chronic low back pain.

Ironically, it was the FDA that slowed the development of NGF inhibitors in 2010 after Pfizer reported some osteoarthritis patients receiving tanezumab experienced worsening of their disease and needed joint replacements. Another safety issue arose in 2012 because the drug caused “adverse changes in the sympathetic nervous system of mature animals.”  Most clinical studies of tanezumab did not resume until 2015.

“We look forward to continuing to advance tanezumab in our ongoing global Phase 3 development program, which includes six studies in approximately 7,000 patients with osteoarthritis, chronic low back pain and cancer pain,” said Christi Shaw, senior vice president of Eli Lilly. In studies to date, tanezumab has not demonstrated a risk of addiction, misuse or dependence.

Regeneron recently halted high-dose trials of fasinumab, another NGF inhibitor, because the risk of harm outweighed the benefits of the drug. There is some concern that NGF antibodies work too well and encourage osteoarthritis patients to become more active, which accelerates joint deterioration.

Why Are They Being So Cruel?

By Debbie Duke, Guest Columnist

I am 63 years old and have been on pain meds consistently since the age of 38.  I have systemic lupus and scleroderma, which fortunately is in remission.  I also suffer from gout, fibromuscular dysplasia, scoliosis, kidney pain and post-operative pain from breast cancer surgery.

My experience with pain management doctors in the beginning was very pleasant and I was getting relief from my agony. I was disabled but still functional due to pain medication. 

But recently things have changed.  After several years of using a pain pump, I decided to go back to oral medication to have more control.  The pump was not that effective for breakthrough pain and made me feel disconnected. After giving up on the pump, I changed doctors and the new one gave me the medication I had been before.

On my last visit, he said a new law requires patients on pain meds to have no more than the equivalency of 90mg of morphine.  Then he cut my dose in half.  I am now in agony and can see why people would turn to other ways of getting relief or decide to end it all. 

I love life and have many reasons to live. I care for a grandchild who had nearly been lost to foster care. Now, due to my inability to get around very well, I may not be able to continue taking care of her. 

DEBBIE DUKE

I can't bear to think of it. 

Why are they being so cruel to those of us who are law abiding, while the crooks get away with it?  When someone grabs grandma's meds from her purse or medicine cabinet, why is that grandma’s fault? 

Overdoses have been around for years and years. Who did we blame?  The one who stuck the needle in their arm, that's who.  Yes, we have a drug epidemic, but do something about the drugs coming across our borders. There has been enough squeezing of patients. Give them what works for them.  It sickens me to see patients treated unjustly turning to other ways to help themselves.

I'm truly afraid that everything in my life as I know it will end.  Thanks to irrational politicians who have taken away our right to be as free of pain as possible.

I think sometimes about what will be said in the future.  We'll be saying, “Remember the days when we were able to have pain relief and no one had to suffer?”

I know that people are dying, but to equate prescriptions with illegal drugs to make some political point is wrong. I wish those that are in pain could march down Pennsylvania Avenue. But we are too sick for that. 

Debbie Duke 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.

The Hidden Costs of Patient Advocacy

By Barby Ingle, PNN Columnist

I have been advocating for chronic pain patients and the pain community since 2006. I started advocating because my chronic pain journey was long and hard, yet my story was by no means original. What happened to me was happening to far too many others. We were being ignored by the medical system and had lost our voices. 

I decided that it was time to get my voice back. 

I first started advocating for myself with my own providers, then started going to doctor’s appointments with other patients, followed by peer-to-peer mentoring of other patients and attending health events. Within a few years I was being asked to be the patient representative at many conferences. 

I didn’t start using social media until 2009. Doing so opened up a whole new set of ways to advocate. I began connecting with people all over the United States and the world. In 2010, I was invited to testify at a Defense Department hearing in Washington, DC and also at the Arizona legislature. 

I had patients attack me on social media for not being sick enough. Well, they haven’t seen me at my worst! What they saw was the branding and marketing image of me, which puts an emphasis on positivity. 

I recently watched an argument on social media over how much advocacy costs. There were two sides to the argument. On one side were those who think advocacy should be free and that it costs nothing. The other side was saying that money is needed to fund advocacy work and that people should donate to pain organizations who do it for them. 

If you asked me during my first 5 years of advocacy, I would have said it is free to be an advocate. But over the past 7 years I’ve learned that there are many hidden costs outside of the time you volunteer. 

As an advocate who makes phone calls, your monthly phone bill would be a minimum of $25 for each phone line per month, plus another $20 for unlimited long distance. For online advocacy, internet service fees would be about $45 monthly. That’s not counting the cost of a computer, printer, telephone, office space, supplies, newsletters, etc.

Whether you are going for in-person advocacy or mailing letters, you need to take the time to research the issues and work on prep materials. That may take 10 to 20 hours per issue. If you are lucky enough to be paid for your time ($15/hour is the proposed national minimum wage), that would be a minimum salary of $150. 

Traveling to your state capital could cost a tank of gas, plus your time. That is not much. But to go to meetings in Washington, DC – as dozens of advocates recently did to attend an FDA hearing -- you will need to pay for your flight, hotel, meals and ground transportation.  

When someone like myself is paying for most of these costs privately, it adds up to tens of thousands of dollars a year. Can you do it for less? Yes, but then you are getting less out of your advocacy work and it is going to be harder to make a difference. 

We do need individual patients to write letters, make phone calls and call for change. But to say that there is no cost involved is really not accurate at all. There are many other costs, like writing social media content, pamphlets, resource materials, business cards, etc. that should be taken into consideration.

Just recently Don't Punish Pain rallies were held across the country. The campaign is said to have begun with one woman and a stack of index cards, but that doesn’t factor in all the other costs of signs, banners, telephone calls, and posting on social media, or the hundreds of people who volunteered their time to organize and attend the rallies. 

Advocacy costs at all levels. Recently I heard from a patient who was on workers compensation, who lost her provider and medical care because she was so involved in advocacy they thought she had a job. 

There are millions of dollars involved in advocacy and the work takes time, effort, heart and care. Please know that I am glad for all advocates and the help that comes from any efforts they make. We are not thanked a lot. 

I send out big thank you notes to everyone who has sent an email, made a phone call, testified in person, attended a doctor’s appointment with another patient, and made a difference for even one other person. Whether you are paid for your advocacy work or not, it has value and it does at minimum cost us energy pennies! 

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.

Addiction to Rx Opioids Falling

By Pat Anson, Editor

A new report from health insurance giant Blue Cross Blue Shield highlights a little-known and rarely reported aspect of the opioid crisis: Addiction to opioid pain medication is declining, not increasing.

Blue Cross Blue Shield (BCBS) said 241,900 of its members were diagnosed with opioid use disorder (OUD) in 2017, a rate of 6.2 for every 1,000 BCBS members. The rate fell to 5.9 in 1,000 members in 2017, a decline of nearly 5 percent. The insurer said it was the first drop in the eight years BCBS has tracked diagnoses of OUD.

"We are encouraged by these findings, but we remain vigilant," said Trent Haywood, MD, senior vice president and chief medical officer for BCBS said in a statement.

"More work is needed to better evaluate the effectiveness of treatment options and ensure access to care for those suffering from opioid use disorder."

BCBS attributes much of the decline to a 29% drop in opioid prescriptions for its members since 2013.  A longtime critic of opioid prescribing hailed the findings as a sign of change.

"It means that there's light at the end of the tunnel," psychiatrist Andrew Kolodny, MD, the founder and executive director of Physicians for Responsible Opioid Prescribing (PROP) told BuzzFeed.

"Unfortunately though, the genie is out of the bottle," said Kolodny, a former medical director of the addiction treatment chain Phoenix House. "Millions of Americans are now struggling with opioid addiction. Unless we do a better job of increasing access to effective treatment, overdose deaths will remain at record high levels and we'll have to wait for this generation to die off before the crisis comes to an end."

Admissions for Addiction Treatment

The BCBS numbers should be taken with a grain of salt, since they include all types of opioid addiction, including those linked to heroin, illicit fentanyl and prescription opioids. A more accurate way to track addiction to opioid medication would be admissions to publicly-funded treatment facilities for “non-heroin opiates/synthetic abuse” – a category that excludes heroin, but includes hydrocodone, oxycodone, fentanyl and other painkillers.

A database maintained by the Substances Abuse and Mental Health Services Administration (SAMHSA) shows that treatment admissions for prescription opioids peaked in 2011 at 193,552 admissions and fell to 121,363 by 2015 – a significant decline of over 37 percent. It seems likely that admissions for painkiller abuse have fallen even further since 2015, as opioid prescriptions have continued to plummet, and more pain patients are abandoned or denied treatment.

The SAMHSA data also reveals another trend: While the number of people seeking treatment for painkiller, alcohol and marijuana abuse has declined, admissions to treatment facilities for heroin addiction have soared. In 2010, there were 270,564 admissions in which heroin was identified as the primary substance of abuse. By 2015, that number had grown to 401,743 admissions – an increase of nearly a third.

ADMISSIONS TO ADDICTION TREATMENT FACILITIES

SOURCE: SAMHSA

Admissions for heroin addiction now surpass those for other substances, yet much of the nation’s spending and law enforcement resources remain targeted on opioid prescriptions. Many public health officials also cling to the myth the heroin epidemic was triggered by opioid overprescribing, even though heroin admissions outnumber painkiller admissions by a 3 to 1 margin.

“Epidemiological data show that as widely prescribed opioids became less accessible due to supply side interventions, heroin use skyrocketed,“ psychiatrist Nora Volkow, MD, director of the National Institute on Drug Abuse, recently told OpioidWatch.  Volkow was an early supporter of the CDC opioid guideline, one of the first supply side interventions, a strategy that she now characterizes as "naive."

“Expecting that declines in rates of prescribed opioids could, by themselves, stem the tide of the opioid crisis is naïve and an oversimplification of the complex nature of the crisis," Volkow said. "Legitimate questions have been raised about whether some pain patients might now be undertreated, and whether tightened prescribing practices over the last few years has contributed to the surge in overdose deaths from heroin and especially fentanyl.”

A recent study by SAMHSA found that deaths linked to illicit fentanyl and other synthetic opioids surpassed overdoses involving pain medication in 2016.  The study also found that drugs used to treat depression and anxiety are involved in more overdoses than any other class of medication.

Living with a Beast

By Cathy Kean, Guest Columnist

I am living with a beast who is cold, heartless, unmerciful, uncaring and cruel. Always lurking around me, making my life so challenging, so exhausting, and so painful. Not only physically, but mentally, spiritually and emotionally.  

This beast has taken so much from me, I hardly remember how it was before it came into my life. Of course, I had challenges and difficult times. But I was functional and happy. And I could cope! I could manage! 

Now I have had to deal with this evil and vindictive beast.  I live day in and day out in my cave (my bedroom), lying in bed. I rarely venture out anymore.  I've become isolated and alone; so different from the life I used to live. 

I wish that I had swallowed and drunk up and absorbed the greatness and beauty of the life I had before, and not taken it for granted. What I wouldn't do or give to go back to that time! 

I mourn me. I miss me. I know my kids and my grandchildren miss me. The woman I used to be was energetic, vivacious, outgoing, industrious, loving and friendly. There wasn't a person that could walk by me without me engaging in some kind of banter.  I loved life so much more then!

Now I am attacked when I least expect it. I have no way of knowing how or when, because the beast is always present, always lurking around. It has hurt my family, my career, my outlook and my sense of self. I am followed everywhere.

When the beast is angry, my days are hell and my nights sleepless. It is behind me, beside me, everywhere, every day.  I truly cannot remember a time that I lived totally out of its grasp.

This fiend’s name is PAIN.

Pain is brutal, savage and barbaric at times. Pain cares little for family occasions, social events or holidays. Pain forces me to stay home, ensuring I don’t forget its brute presence for a second. The beast has been a silent witness to some of the most extraordinary and excruciatingly painful moments of my life.

There are so many who live with this insidious beast, just like I do. We do our best to keep on living, despite pain's germinating presence. You never become immune to the torturous, aching, stabbing, aching and suffering that pain brings, regardless of how long you live with it.

I am trying to learn that this is my new normal and I must continue with my life. I try to smile, laugh and engage, despite the struggle, strain and toil it causes. But I feel like I have been robbed!

I need to tell those who do not have chronic pain a little secret.

It hurts all day, every day, 24/7.

365 days a year.

It never stops.

It never ends.

You eat, it hurts.

You sleep, it hurts.

You just exist, it hurts.

You rest, it hurts.

You breathe, it hurts.

Every single aspect of every single day, it hurts.

And now without my essential tools (my medications) that gave me functionality, my quality of life has diminished 98% due to CDC guidelines. I truly don't know how much longer I can stay in this fight, this madness, this torment and this torture.

Constant and chronic pain isn’t something you can deal with for a long period of time. My organs are starting to shut down. I am blacking out constantly. I am having cardiac issues. I am in so much pain, I pray to God to take me!

I have begged my adult children to please not be angry with me if I take my life. I want to be here! I want to see my grandbabies grow up. I want to engage in life again!

I made a difference in peoples’ lives. I used to be a parent's last hope for true help and success when I had access to my medications. I was a special education advocate and I was good! I knew those feelings of desperation, not knowing where to turn or what to do for your child.

I just wish the government, our families, friends, and society would see us as human beings with value. Please be more compassionate, more loving and more accepting of our limitations.

No one would ask or want to live with this beast, this madness! I promise you!

Cathy Kean lives in California. She is a grandmother of 7 and mother of 4, who has chronic pain from lupus, fibromyalgia, Parkinson's disease, and stiff person syndrome. Cathy is a proud member of the Facebook group Chronic Illness Awareness and Advocacy Coalition.

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.

DEA Adopts Rule to Further Limit Opioid Production

Pat Anson, Editor

The U.S. Justice Department has finalized a new rule that will allow the Drug Enforcement Administration to reduce the amount of opioid pain medication a drug maker can produce if it finds the opioid is being diverted or misused.

The controversial change in the opioid production quota system was adopted despite warnings from patients, doctors and drug makers that it targets the wrong the problem and could worsen shortages of some pain medications.

The DEA maintains the rule change will “encourage vigilance” on the part of opioid manufacturers to prevent their drugs from being abused.

“These common-sense actions directly respond to the national opioid epidemic by allowing DEA to use drug diversion as a basis to evaluate whether a drug’s production should be reduced,” said DEA Acting Administrator Uttam Dhillon in a statement. “This also opens the door for increased communication and better information sharing between DEA and individual states, as we work together to address the opioid problem plaguing our country.”

The final rule greatly enhances the roles played by states and other federal agencies in setting opioid production quotas. It requires DEA to share proposed quotas with state attorneys general, who could object to a quota and demand a hearing.

The rule also allows DEA to consider “relevant information” from all 50 states, the Department of Health and Human Services, Food and Drug Administration, the Centers for Disease Control, and the Centers for Medicare and Medicaid Services, before setting a quota.

"DEA must make sure that we prevent diversion and abuse of prescription opioids. Today's new rule, by taking diversion of these opioids into account, will allow the DEA to be more responsive to the facts on the ground. More importantly, it will help us stop and even prevent diversion from taking place,” said Attorney General Jeff Sessions.

Sessions announced the proposed rule changes in April, and DEA received over 1,500 public comments during an unusually short comment period. A clear majority opposed the new rule.

“This does nothing to stop addiction or overdose deaths. Addicts will find a high anywhere and where they find it now is street drugs! Illicit drugs are what’s killing, not doctor prescribed opioids filled at a pharmacy. The reporting you all are using is inaccurate and false,” wrote Amy Vallejo.

“By creating quotas, and thereby shortages, you are committing torture,” said Kimberley Comfort, who lives with arachnoiditis, a chronic spinal disease. “There is no reason why people having surgeries, people who suffer from incurable diseases, should be left to suffer when we are a nation that has the ability to take care of its citizens. The DEA does not have a clear understanding of the so-called opioid crisis and therefore needs to cease and desist making opiates harder to get.”

“Again, we have the DEA making laws and quotas on something they should not be. Let them worry about the drugs coming in from China, Mexico etc. which are illegal,” said Sarah Yerxa. “By cutting the quotas all they are doing is sending needy pain patients to the streets, which will just raise the addiction... and overdose problem.”

Opioid Shortages

The DEA has already made substantial cuts in opioid production quotas, reducing them by 25 percent in 2017, followed by another 20 percent cut in 2018. This year’s cuts were ordered despite warnings from drug makers that reduced supplies of opioids “were insufficient to provide for the estimated medical, scientific, research and industrial needs of the United States.”

Many hospitals and hospices now face a chronic shortage of intravenous and injectable opioids, which are used to treat patients recovering from surgery or trauma. The shortage has been primarily blamed on manufacturing problems, although some critics say it has been worsened by the DEA production cuts.

“I believe Attorney General Jeff Sessions needs to sit down and talk to some of these physicians who are pain specialists and understand that what he’s doing is going to put the chronic pain patient, the post-operative patient, and the patient that comes to the emergency room in serious jeopardy,” Tony Mack, CEO and chairman of Virpax Pharmaceuticals, told PNN in an earlier interview.

“I think that Jeff Sessions is not educated well. I think he is picking on something that sounds good politically but doesn’t make sense socially. It’s socially irresponsible.”

In a public notice announcing the rule change, the DEA said it was not responsible for “perceived shortages” of injectable drugs and blamed the “manufacturer induced shortages” on “internal business decisions.”

The agency also deflected criticism that it was targeting the wrong problem. Recent studies indicate that overdoses involving illicit fentanyl, heroin and other street drugs now outnumber deaths linked to prescription opioids.   

“The DEA acknowledges that prescriptions for opioid drug products have decreased over the last several years due to the stepped up civil, criminal, and regulatory enforcement efforts of the agency. However, while there is a downward trend in prescribing, these Schedule II prescription opiates continue to have a high potential for abuse and dependence and require the annual assessment of quotas,” the DEA said.

The agency also claimed prescription opioids were “inextricably linked” to overdoses from heroin and illicit fentanyl, because many addicts start by taking pain medication from family medicine cabinets and then move on to street drugs.

The DEA statement defies some of its own analysis. Less than one percent of legally prescribed opioids are diverted, according to a 2017 DEA report, which also found that admissions for painkiller abuse to publicly funded addiction treatment facilities have declined significantly since 2011, the same year that opioid prescriptions began dropping.

6 Emotional Stages of Chronic Pain

By Ann Marie Gaudon, PNN Columnist

Emotions are part of our life experience and influence how we cope with challenging situations such as chronic pain.

Emotional responses to pain are not “bad” or “negative” because they are a natural response to life events. For example, depression is often seen as a sign of poor health, but it can also be a way of conserving bodily energy.

Emotions are never a sign of weakness. Emotions are adaptive responses which have helped us survive as a species.

Did you know there are normal emotional stages of injury and pain? Not everyone goes through every stage and it is not a linear process. Sometimes we bounce from stage to stage in no particular order.

Let’s look at these 6 emotional stages of chronic pain:

Denial

Denial is when we refuse to acknowledge how we feel and try to conceal the problem. When we’re in this stage our thoughts are likely: “It’s probably nothing serious” or “It will pass soon enough.”

Typical denial behaviour would be to ignore the pain, keep going as though you’re not in pain, failure to seek medical attention, and not following medical advice. Basically, you’re acting like nothing is going on in your body.

Denial is also culturally reinforced by beliefs that we should “suck it up, don’t complain and keep working.”

Fear and Anxiety

We feel fear and anxiety when the reality of something wrong hits home. You will likely be thinking quite repetitively during this stage. Typical thoughts would be: “Something is very wrong” or “What’s going to happen to me?” 

In this stage, your behaviour might be to rest and withdraw or avoid activities to protect yourself from further injury or pain. You will find yourself preoccupied with a lot of worry. You will likely begin to scan your environment and your body for threats to either, and it will be hard to commit to work or play.

Depression

Depression is the most common response to chronic pain and tends to come after fear and anxiety. Your thoughts would be normal in this stage if they were: “What’s the use?” or “Why bother with anything anymore?”

Realize none of this is enjoyable or desired; it is a normal response to chronic pain. Your behaviour would be to reduce participation in normal physical activities – even the enjoyable ones.  Social withdrawal would continue as a protective adaptation and you might experience problems with sleep.

Depression can impair your sense of self and you may grieve the loss of your identity. If you’re not an employee and parent anymore, then who are you? It is normal to withdraw in depression when your world shrinks in size.

Anger

Another emotional stage, and one I am quite familiar with, is anger. This defensive behaviour is the “fight” in the fight-flight-freeze response. It energizes you to resist the problems that come with chronic pain, and to ward off danger and restore safety. Normal angry thoughts about your pain would be: “It’s not fair” or “Why me?”

Behaviours in this stage can sometimes be troublesome, as they may become impulsive (acting or speaking quickly without thinking it through) or compulsive (repetitive behaviour not serving a purpose). You may overreact to smaller things and blow up at others. You might also engage in risky behaviour such as abusing alcohol or other substances to try to numb yourself.

The key is to express your anger in a healthy manner and hopefully transform it into affirmative action.  This is where you find the message in your anger and put it to work for you. I put my anger to work for me as I advocate for chronic pain patients on a regular basis.

Shame

Shame is not to be confused with guilt. Guilt says, “I’ve done something bad” while shame says, “I am bad.” Shame comes from how we see ourselves as damaged goods and can lead to feelings of self-loathing and disgust. You might think: “I’m worthless” or “I’m a complete failure.”

As a therapist, I find this to be a particularly powerful and difficult stage for clients, as shame often takes up all the space in the room. Behaviours in this stage would be continued social withdrawal, a decrease in assertiveness and self-confidence, and possibly self-destructive behaviours such as abusing alcohol or drugs.

Acceptance

The final emotional stage of coping with chronic pain is acceptance. Some patients reach this stage fairly quickly and others never reach it.

Let me be crystal clear about acceptance: It does not mean that you want this pain or that you like this pain and gladly accept it. Absolutely not. What it does mean is that you accept yourself without judgment, you live in the present moment, and you accept what is. Your thoughts will be along these lines: “This is not my fault” or “I can and will cope with this.”

Behaviours begin to change in this stage. You will be less focused on the past and have more realistic expectations of yourself. You will maintain appropriate levels of physical activity, use medications appropriately, reduce your emotional stress, and begin to experience feelings of peace rather than constantly beating yourself up.

Acceptance does not mean that you no longer feel any of the other emotions.  You may still experience feelings of denial, fear and anxiety, depression, anger and shame, but they will be less often and with less intensity.

Acceptance -- which includes hefty doses of self-compassion -- does not cure anyone’s physical pain, but it does facilitate better coping and reduced emotional stress. You do not accept pain because you want it or like it, but because it is here, you have it, and you respond to it in a kinder, gentler way.

The purpose of acceptance is to engage in activities that you feel have value. Within this purpose, acceptance becomes relevant and necessary. As a consequence, there is often less time spent struggling against and trying to avoid pain -- time freed up to engage in more valued pursuits.

It may take some time and support to acquire this tool, but once you have, it’s yours for life. Double entendre fully intended.

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.

Betrayed by My Doctors and My Government

By Jeff Watt, Guest Columnist

I was a nurse and that career gave my life purpose.  I felt like I was making a difference in my patients’ lives.  However, in October of 2014, the healthcare system that employed me destroyed me.

I was experiencing stiffness in my neck and had some red spots on my legs.  I also had a fever that broke the night before.  That was it. 

Unfortunately, because I went to the ER to figure out what was going on, they decided to do a spinal tap.  The physician attempted 3 times and failed, so another provider was called in, who did another two attempts before finally placing the needle. 

JEFF WATT

The next day, I got the most agonizing headache of my life.  When I went back to the ER, they found the reason was a spinal fluid leak caused by all the failed attempts to collect spinal fluid.

The treatment for spinal headaches is to do an epidural blood patch, which includes another spinal puncture.  The first blood patch was placed in the wrong place, so the headache returned.  It took a second blood patch, and then ANOTHER spinal puncture to have it placed correctly and to make the headache go away.

Shortly after, I started experiencing sharp shooting pains down my right leg, causing extreme constant pain and causing me to collapse, unable to bear my own weight. 

I returned to the ER and they sent me to see a neurologist, who did an MRI and a number of other tests, in the end diagnosing me with a condition called arachnoiditis.  This is a progressive disease caused by scar tissue in the arachnoid space of the spinal cord clumping together and pinching the nerves, 24/7.  Arachnoiditis is progressive, a condition that only worsens and is incurable.  It has been described as pain as bad as that of cancer, but without the release of death.

Over the last 3 years since my injury, I have lost my job, friendships, and the ability to do sports and activities with my wife.  I have experienced increased shooting pains and weakness in my right leg, loss of bladder and bowel function causing me to wear adult briefs, balance issues, sexual dysfunction issues, and the list goes on.

Numerous specialists couldn’t provide a treatment to alleviate my pain.  I tried medication after medication with the same result -- until I was prescribed extended relief morphine and oxycodone.  These medications controlled my pain enough that I was able to get out to do events, to help out at home doing laundry and dishes, and gave me back a quality of life that I didn’t have.

In the last 6 months, I have been forced to completely taper off of these medications because of a set of guidelines released by the CDC. 

The so-called opioid “epidemic” has made persistent pain patients like myself collateral damage in the government’s attempts to stop deaths from overdosing.  The CDC even admitted it mistakenly included legal prescription opioids in the same data as overdoses caused by illicit fentanyl from China and other synthetic opioids.

I now spend my days in severe unrelenting pain.  Alternative medications prescribed by my doctor have done nothing.  I feel as though I have been abandoned and betrayed by my doctors, and my government.  My doctor is supposed to help and do no harm, and my government is supposed to do what is in the best interest of the people they represent, including patients who are dependent on opioids to give them a quality of life.

If the government is truly concerned about people’s deaths, perhaps it should look into the increase in suicides by patients who suffer from persistent pain.  We deserve effective and compassionate treatment of our pain.

Jeff Watt lives in Oregon.

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

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

Pain Patients Urge FDA to Fix CDC Guideline

By Pat Anson, Editor

Chronic pain patients are losing access to opioid medication, can’t find doctors willing to treat them, and are often treated as addicts, pain sufferers told FDA officials during an emotional public hearing Monday.

The Food and Drug Administration called the meeting to hear from pain patients about “challenges or barriers” they face in accessing treatment. Much of the testimony focused on the Centers for Disease Control and Prevention's 2016 prescribing guideline, which discourages opioids from being prescribed for chronic pain and has been widely adopted throughout the U.S. healthcare system.

“FDA, we are begging you. Correct the CDC’s egregious mistakes. Tell the country the truth about prescription opioids. They are safe and effective for 99% of us,” said Rose Bigham, who lives with chronic pain caused by Ankylosing Spondylitis, fibromyalgia and Crohn’s disease. “My new worst nightmare is being admitted to the hospital, being in agony and being denied pain relief.”

“CDC Guidelines have been a disaster for pain patients,” Rick Martin, a pharmacist disabled by chronic back pain, said in prepared testimony. “There is plenty of anecdotal evidence showing involuntary (opioid) tapering is rampant across the U.S.  Many, many stories of patients who are inhumanely suffering, some with suicidal ideation.

“The FDA needs to take action.  The FDA says it wants to know about challenges or barriers to accessing treatment. The challenge and the barrier is the CDC guideline. It should be immediately suspended.  It should be reviewed and modified with pain management physicians and patient input.”

“It seems to me we are asking for our right to have a normal life. I don’t feel like we should have to beg others for our right to live. It is not by another person’s hand to dictate how my life goes,” another pain sufferer said.

Dozens of pain patients and advocates attended the day-long hearing in Silver Springs, MD, including many who came from out-of-state at their own expense. Some fought back tears as they testified. Hundreds more watched the meeting online.

Many patients said they had tried non-opioid medications or alternative pain therapies, and found them ineffective or had side effects. One woman who took the FDA-approved medication Lyrica said it made her suicidal.

“I am a three-time suicide survivor because of medications you guys approve... and I have actually given up on FDA approved medications. I only take herbs in raw forms. Every one of those drugs that you approved for me to take led me to almost die,” said Kelly Devine. “Stop controlling everything any person wants to use to treat whatever form of whatever disease they are dealing with. Let people have the choice of what we put in our body."

“I don’t know if you are aware, but pain patients are being extorted into having dangerous invasive procedures," another patient warned. "It’s happening all over the country. Pain doctors are saying, ‘You want your meds, you have to go have an ESI (epidural steroid injection).’ Extorting patients into having procedures just to get meds is not right.”

‘Too Many Prescriptions for Opioids’

The FDA’s public hearing was a hopeful sign that at least one federal agency is starting to listen to patients about the worsening quality of pain care in the U.S. 

President Trump’s opioid commission held five public hearings in 2017 without ever inviting a pain patient to testify.  The CDC also ignored the pain community when it secretly drafted its opioid guideline, relying instead on the advice of addiction treatment specialists, anti-opioid activists and academics. And the DEA ignored warnings from patients that further cuts in opioid production quotas could lead to shortages of pain medication, which are now occuring at many hospitals.

Will the FDA seek changes in the CDC guideline? The early indications are not promising.

“Unfortunately, the fact remains that there are still too many prescriptions being written for opioids,” FDA commissioner Scott Gottlieb, MD, said in a lengthy statement apparently written before the hearing began.  “We don’t want to perpetuate practices that led to the misuse of these drugs, and the addiction crisis. At the same time, we don’t want to act in ways that are poorly targeted, and end up disadvantaging legitimate patients.”

Gottlieb said the FDA was encouraging medical professional societies to develop their own opioid guidelines for different medical conditions. But he stopped short of calling for changes in the CDC guideline itself, saying it provides "helpful guidance to prescribers.”

“The CDC guidelines reinforce the need to treat pain carefully and adopt opioids as a last resort medication for most conditions,” said Gottlieb, who did not attend the hearing but will be briefed on it, according to FDA staff.