12 Gifts of Knowledge About Chronic Pain

By Pat Anson, PNN Editor

Are you looking for a special gift for a loved one over the holidays? How about a gift to yourself?

Every year we like to feature 12 books that help explain what causes chronic pain, possible ways to treat it, and the impact chronic pain has on society. Our list of books is not comprehensive — no list can be on such a complicated subject — but you or a loved one may learn something you didn’t know before.

These and other books can be found in PNN’s Suggested Reading section. I recently added books on spinal surgery, arachnoiditis, knee pain, illicit fentanyl, low dose naltrexone, meditation, fibromyalgia and CBD.

Click on the book's cover to see price and ordering information. PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon. As an Amazon Associate, we earn from qualifying purchases.

Taming Chronic Pain by Amy Orr

Scientist and pain sufferer Amy Orr offers practical advice learned from her own journey with chronic pain. “Feeling broken” after years of pain, Orr researched the physical and psychological effects of chronic pain, and shares what she learned in this blunt and sometimes humorous handbook. Orr believes the key to taming chronic pain is to make small changes in your life and become skilled at your body’s response to them.

The Origin of Disease by Carolyn and Christian Merchant, MD

The authors look at the origins of chronic illness by exploring their own family histories and recent research linking many diseases to pathogens and infections. The book challenges many of the concepts of Western medicine by looking at what actually causes diseases and how to cure them — as opposed to just managing their symptoms.

Handbook to Live Well with Adhesive Arachnoiditis by Dr. Forest Tennant

Dr. Forest Tennant, the world’s foremost expert on adhesive arachnoiditis (AA), published this handbook to explain the major causes and symptoms of AA, a progressive disease of the spinal cord. Tennant has successfully used hormone therapy and other groundbreaking treatments to stop the progression of AA, and offers a way forward for intractable pain patients to live well through self-care, exercise, good nutrition, medication and supplements.

Tender Points by Amy Berkowitz

This memoir by Amy Berkowitz details her experiences with fibromyalgia, which she developed as a young woman after a flashback to being sexually assaulted as a child. Berkowitz became convinced of a connection between the rape and her chronic illness, and found support online with other women who shared similar experiences. Berkowitz also recounts how she was mistreated — or not treated — by the healthcare system.

Fentanyl, Inc. by Ben Westhoff

Investigative journalist Ben Westhoff takes a close look at illicit fentanyl and other synthetic opioids, how they are manufactured in China and then smuggled into the United States — where they are now involved in over two-thirds of drug overdose deaths. Westhoff says U.S. drug policy is in “shambles” and poorly equipped to stop the synthetic drug trade, which requires sweeping new public heath initiatives.

The Criminalization of Medicine: America’s War on Doctors by Ronald Libby

This 2008 book remains just as relevant today as it was a decade ago. Author Ronald Libby says U.S. doctors have been turned into criminal scapegoats for the failures of the healthcare industry and the war on drugs. Doctors are prosecuted, fined and harassed by law enforcement for simple billing and record-keeping mistakes, or for treating pain with drugs that non-experts consider excessive or inappropriate.

Do You Really Need Spine Surgery? by Dr. David Hanscom

Retired spine surgeon and PNN columnist Dr. David Hanscom believes most spine operations are unnecessary and often have poor outcomes for patients. Hanscom says back pain is usually the result of normal, age-related conditions that can be addressed through physical therapy and other non-surgical methods.

Saving My Knees by Richard Bedard

In this e-book, journalist Richard Bedard shares his long journey of healing from chronic knee pain. Physical therapy and medication didn’t help and Bedard was fearful of surgery, so he started educating himself about knee pain. He learned that damaged cartilage can be healed and strengthened by simple, daily exercises.

The LDN Book by Linda Elsegood

People around the world are discovering that low doses of naltrexone (LDN) can be used to treat fibromyalgia, autoimmune diseases, chronic fatigue and depression. So why isn’t this affordable and effective drug used more widely? Linda Elsegood of The LDN Research Trust wrote this book to help educate doctors and patients about the untapped potential of naltrexone, which is currently only approved for the treatment of addiction.

Healing with CBD by Eileen Konieczny and Lauren Wilson

You’ve heard the hype about CBD. But does cannabidiol (CBD) really provide pain relief?

This book separates CBD facts from fiction by explaining what CBD is, the science behind it, where to buy quality CBD products, and potential treatments for many common ailments.

Mindfulness-Oriented Recovery Enhancement by Eric Garland

University of Utah professor Eric Garland, PhD, has developed a mindfulness training program to treat both pain and opioid dependence. It teaches people how to savor enjoyable experiences, enhance positive emotions, and stop focusing on their physical and emotional pain. Disrupting these negative habits helps people refocus their lives on more positive ways of thinking, which significantly reduces stress, opioid cravings and pain.

Chronic Pain the Drug-Free Way by Phil Sizer

Author Phil Sizer teaches pain management courses for Pain Association Scotland with an emphasis on using self-management skills such as positive psychology, cognitive behavioral therapy, stress reduction and even humor to relieve pain. Sizer has some off-beat suggestions for patients, such as “punking” pain management rules and avoiding “bubble vampires” — people who suck the energy out of you.

If there is a book or publication that's helped you manage or better understand chronic pain, let us know.

Limiting Rx Opioids Is Making Opioid Epidemic Worse

By David Hanscom, MD, PNN Columnist

I am an orthopedic spine surgeon who specializes in complex problems in all areas of the spinal column.

Over the last five years, a significant percent of my practice has been addressing spine infections, most of them in patients addicted to intravenous drugs. Bacteria can enter the blood stream from a contaminated needle and lodge in the discs between the vertebrae, which have a limited blood supply. It’s an ideal environment for bacterial growth and it destroys the neighboring discs and vertebra. Often they weaken to the point where they break.

Corrective surgery entails draining the infection and then stabilizing the broken spine with a fusion. These operations are complex, expensive and risky. After surgery there is a minimum of six weeks of IV antibiotics.  Occasionally, a patient ends up paralyzed because the infection cuts off the blood supply to the spinal cord.

One typical case was that of middle-aged carpenter with low back pain, who had been able to work for years by taking a stable low dose of opioid medication. He needed to keep working, so when the local pain clinic shut down, he felt he had no other choice but to use IV heroin. His spine became infected and the infection spread deeply into his pelvis. I met him in the hospital when he was extremely ill, and it took three operations to drain and stabilize his spine.

My experience from this and other cases tells me the opioid epidemic is rapidly getting worse. In addition to the medical problems created from IV drug abuse, there were nearly 49,000 overdose deaths from opioids – both legal and illegal -- in 2017. Unfortunately, there doesn’t appear to be a viable solution in sight. In fact, current efforts to reduce opioid prescribing are exacerbating the problem. Although I agree with more careful prescribing practices, it isn’t the answer to the epidemic.

This CDC graphic tells why. As deaths from prescription opioids leveled off over the past several years, mortality from heroin and synthetic opioids like illicit fentanyl have spiked higher. Although the medical system is decreasing the supply of prescription opioids, it’s pushing people to these illicit sources.  

Chronic Pain and Anxiety

Nearly 90 percent of patients on opioids have chronic pain, while the rest mostly suffer from acute pain. But the mental pain is a far greater problem than the physical pain. Any physical or mental threat causes your body to secrete stress hormones, such as cortisol, adrenaline and histamines to improve your chances of survival.

The sensation created by these chemicals is anxiety. Humans have a major problem when they can’t escape from negative thoughts. Anxiety triggers a sustained chemical assault that we will try almost anything to escape from. This unconscious and automatic survival response is over a million times stronger than the conscious brain.

Research has documented that when you are upset for any reason, your pain will increase. It isn’t psychological or “all in your head.” There’s a direct linkage between pain circuits and stress. You will experience an increased speed of nerve conduction from stress chemicals, causing your pain levels to increase.

Many Treatments Don’t Work

Another problem is that modern medicine isn’t providing viable solutions to chronic pain. A recent survey found that only about 1% of physicians enjoy and are comfortable treating chronic pain.

Modern medicine is only pretending to treat your pain. You go to the doctor trusting him or her to help you and you’re repeatedly disappointed. As your frustration grows, your stress hormones remain elevated and your pain physically worsens.

Even worse, many “mainstream” interventions such as surgery have been demonstrated to be ineffective and often cause harm, while effective treatments are not readily available because they are not covered by insurance. A significant percent of a medical system’s revenue is driven by these expensive and risky interventions.

Instead of exploring ways to implement effective treatments for pain, the government and medical establishment are focusing their efforts on restricting access to pain medications -- with most of the focus being on the providers. Physicians are now afraid to prescribe long-term opioids, even though most of us have had patients thrive on a stable opioid regimen.

This is the worst step that could be taken because patients immediately experience increased anxiety, frustration and eventually anger when they are cutoff or have their doses reduced.

What can we do to solve the opioid epidemic?

First, solve chronic pain! Recent medical research has revealed possible solutions but mainstream medicine isn’t implementing them.

Second, recognize that what drives most people to use opioids is mental pain. Physical pain is often secondary.

Third, environmental factors, especially family dynamics may be exacerbating chronic pain. Allow physicians to take the time to listen to patients and focus on their real problems, rather than just randomly treat their symptoms.

Finally, since the problem is so pervasive, the answers must be widely available and implemented by anyone. 

Dr. David Hanscom is a spinal surgeon who 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.

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.

Doctors Won’t Treat My Chronic Pain

By Leanne Gooch, Guest Columnist

I have never been addicted to anything.

I feel the need to preface any conversation about my chronic pain with that statement. I have degeneration in my neck, arthritis, spinal stenosis, failed back surgery syndrome, and some other names that have been thrown into my medical charts. 

A layperson without chronic pain would wonder why I feel the need to document every boring detail of my health history. It’s because I’ve had to explain every minute detail to each and every provider I’ve seen. For 20 years!  

Initially, when my pain started, I had a good primary care doctor who tried hard to find and treat the cause. He prescribed pain medications and sent me to many specialists. But after injections, physical therapy, rehabilitation, etc., he became the first in a long line of doctors who would not treat me as a pain patient. 

I wasn’t considered “chronic” until the 10th year. I learned during that time that women are viewed by the medical profession as weak for reporting their pain. I have seen the faces of both men (doctors) and women (nurses) who judged my pain story as being overly dramatic and embellished.  

I was eventually sent to a hotshot, top-of-his-game neurosurgeon. He said I had degeneration in my spine that they would normally see in elderly patients, 60 or 70 years of age. I was told a surgery would fix me all up. They would cut, put some donor bone in, some screws to hold it all together, and that constant aching pain would be gone!

I signed on the dotted line. I was only 25 years old. Of course, now we know those surgeries are a very bad idea, especially for someone so young, because even if they’re effective in the short term, all that hardware eventually leads to further degeneration with age. 

I had a spinal fusion, was patted on the head and sent my way. In follow-up exams with the surgeon, I was told everything was perfect and that my pain would subside when I healed. “Go live your life,” he said.

LEANNE GOOCH

Yeah, not so much. I spent the next four years in even more pain and was dismissed by no less than six doctors, who claimed that because my x-rays showed everything was fine, I must be fine. I didn’t need further treatment. I didn’t need pain medication. There’s no way I could be in the pain I claimed to be in. 

Eventually, I got in with another hotshot surgeon, but this time it was at a hotshot hospital! They finally unearthed the fact that my fusion never did fuse. I had another surgery, but there were complications. They said my body rejected the donor bone. The bone would have to come from me, from my hip. They would need to cut the front and back of my neck, and my hip. They’d also put in more screws, metal plates and a metal bracket. 

The second surgery was not successful in ridding me of any pain. 

I was back on the merry-go-round of trying to find another doctor. In the interim, I’d gain and lose jobs due to whatever had taken up residence in my once amazingly functional body. I’d gain and lose medical insurance as well. Needless to say, I also went into deep and terrifying medical debt, while also being denied pain treatment. I was ineligible for individual policies because I had a pre-existing condition. 

I was forced into taking antidepressants when I didn’t need them. I wasn’t depressed, I was in pain. I was also forced to undergo counseling twice; both times I was dismissed after one visit because it wasn’t a mental issue I was dealing with. I was too embarrassed to properly express my pain levels. Forced to downplay how desperate I was for pain relief. 

I was even turned away by receptionists, who flatly and rudely said, “We don’t see or treat pain patients.”

That’s a short synopsis of why I am where I am 20 years later, essentially bedridden. The pain doesn’t allow for restful sleep. I can feel my health disappearing. I now have weight issues from hypothyroidism, no appetite most of the time, insomnia that doctors won’t treat, and very high blood pressure. 

After 18 years, I finally got to a pain clinic, as they call them now. The doctor has two physician assistants, one who believes everyone is a drug addict and one who wants to do a good job, but whose hands are tied by government guidelines and overreach. 

I am under-treated by a long shot, yet I am harassed by the pharmacist every single month. I use one pharmacy and one doctor, but still run into denial or delay getting a prescription filled. I had to explain and essentially beg the pharmacist to get a small script filled after my most recent invasive surgery for a spinal cord stimulator. 

Four months later, I’m still in tremendous pain and have a nearly constant tremor in my right arm. The stimulator seems to hit on a nerve and my muscles seize up, the pain rising to levels that I didn’t know a human could withstand. It’s awful. It’s painful. And I am under-medicated because of criminals I never had a thing to do with. 

I have been told that my pain will never get better and can never be cured. It will only get worse as the degeneration continues. Wishing for it to be over is a pervasive daily thought. I have to work diligently to chase those thoughts away, so as not to fall prey to giving up.

My doctors can’t or won’t treat me because my chronic pain contributed to all the addicts all over the world. I’ll admit that’s a ridiculous statement when they admit they’ve gone too far in denying me proper medical care. 

I am 43 years old.

Leanne Gooch lives in Missouri.

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: Recovering from Spinal Surgery

By J.W. Kain, Columnist

For those of you playing the home game (i.e. following my blog), I’ve been recuperating from a cervical discectomy and fusion of C4-C5. That was February 19. I’ve been recovering in an amazing fashion, much faster than my first fusion of C5-C6.

Just north of a month later, I also had thoracic injections at T-11 through L-1. I was far more scared of this procedure than the fusion -- and I’ve had injections before, so it was nothing new. I knew exactly what was going to happen, but I didn’t know how my body would react. Why? Read on.

My Abbreviated Back Story

My injuries have followed a strange road. When my mom’s car was stopped in traffic in 2004, we were rear-ended at 65 miles per hour. I was seventeen. I broke my spine in four places: T-11 through L-1, but also a facet joint that wasn’t found until a year later when it had calcified over a cluster of nerves. That’s why every movement in my midsection causes pain.

Nine years later, my car was rear-ended again. This led to my cervical and lumbar issues, the two fusions, and a frightful double-injury to my thoracic region. We haven’t touched that area since before the second accident because every procedure known to man (shy of surgery) had been attempted, and they generally don’t do surgery there unless you can’t walk. Plus, my neck was being very loud, so I had to deal with that before opening another can of worms. My doc decided to start at my head and work our way down from there.

My pain management doctor is incredible, amazing. Sympathetic, and smart as hell. Even so, in this current political climate and with the CDC’s asinine new guidelines, I have become afraid of the medical system in which I am firmly entrenched. Let’s discuss why.

This was taken mid-February. We’ve come quite a long way in a short amount of time. Now the hair is basically a pixie cut instead of the Furiosa.

The CDC Is Actively Harming Chronic Pain Patients

Normally I don’t write about the government. I don’t write about controversial issues because I don’t like arguing with people in the comments section. I didn’t write about the CDC releasing its opioid guidelines and how they glossed over chronic pain patients like we don’t exist. Before I get back to my thoracic injection story, here’s a blurb about why the CDC is so far off the mark that it hurts my heart.

One of my readers and I have been corresponding. After ages of complaining to doctors about intense, all-consuming pain, they discovered she had a tethered spinal cord -- as in, her head is essentially falling off her neck, according to the MRI report. Not only that, but those MRIs she’d fought to get, that her pain management doctor had said were “unnecessary,” revealed a host of other problems that will likely all merit surgery at multiple levels of her spine. The level of pain in which she lives is unholy. And now she -- and we -- have to fight for pain medication? We know our bodies. We know what works. And sometimes we have no other options.

The CDC should not have the power to take away a method of pain control upon which so many people rely without providing appropriate alternatives. You can’t tell someone who’s had to rely on Percocet for 30 years, “Oh, well, we’re taking those away now. We’ll wean you off those, refer you to physical therapy, and really get you into meditation.”

Meditation is great. Mindfulness is great. Yoga is great. Those alternative medicines are great. I use them all. However, they are great as a complement to medication. Sometimes medication is all we can use in order to actually thrive in this world and not just sit in a chair all day, every day, watching television and not able to function. We don’t want to have to apply for SSDI. We want to live. We want to contribute to society.

We don’t take opioids to get high. We take opioids to feel normal.

Back to Spinal Injections

Anyway. Rant aside, the fact that I have been in two car accidents, have literally thousands of pages of medical history to back me up, and have countless doctors who can verify structural damage, I am still afraid of not being believed. Pain is subjective. People are prone to exaggeration. We have to fend for ourselves unless we find that one-in-a-million doctor who can help and is not afraid of prescribing legitimate medication.

Look at the California doctor who was recently convicted of murder for overprescribing painkillers for clients. She was actually reckless in her actions, but her conviction echoed throughout the medical community. Many other doctors will now prefer to be hands-off entirely, leaving patients in the lurch.

my C4-C6 fusion

Thankfully, I have found the best pain management doctor at Beth Israel Deaconess Medical Center in Boston. He understands that I am not just one big injury; I am a cluster of injuries at three different levels of my spine that were brought on by two separate car accidents. It doesn’t seem like it’d be difficult to grasp, but so many doctors didn’t believe that the second car accident -- much less drastic than the first -- could cause so much pain.

It wasn’t just the accident; it was the compounding of pain. I was already in pain and had been for nine years. This second accident created more pain. It’s a simple equation that many pain clinics somehow failed to grasp. Thankfully, my spine surgeon and my pain management doctor got me. They understood. They cared.

Which is why the thoracic injections were so horrifying. My brother was my designated ride, and after the procedure the nurses had to bring him back into the holding area because I was sobbing and on the brink of hysteria. (Naturally, in his haste he left my purse and coat in the waiting room, but he remembered all of his important stuff. Even in that state, I could see the humor of the situation.)

The pain of those thoracic injections -- an area that hasn’t been touched for probably eight years -- was so intense that I was literally screaming. These were diagnostic injections and a bit of steroid to see if the area was responsive after all this time. The doctormopoulos instructed the tech to give me a stress ball to squeeze and lots of tissues to drench. It took fewer than 10 minutes, but those 10 minutes were agony I have not felt before or since.

What if that had happened in front of a doctor I’d never met before? Somehow this was the same exact resident team that had done my lumbar injections a few months ago. Sometimes doctors switch up their accompanying residents, but nope -- we recognized one another. They saw the stark before-and-after versions of me.

What if that travesty were my first procedure? The new doctor would’ve stopped everything. We might not even have gotten to injections, because he might’ve glanced over my voluminous medical chart and said, “There’s nothing new to try, and they already did so much. This might be the best it gets for you.” And so many of us are told this!

Nobody sits you down after an accident and says, “You’re going to have chronic pain for the rest of your life.” It’s not like a cancer diagnosis when you only have so long to live. It’s always, “Well, at least you didn’t die!” We all think that we deserve to feel like we did before. We put our lives on hold because we think “I am going to get back to what I was. I’ll do the things I dreamed of doing... when I feel better.”

When I feel better. It’s always that thought in the back of our minds.

I finally realized that there might come a threshold where this is the best I get, and it won’t be close to what I used to be. Sometimes it’s not physically possible to be 100 percent again. If I can live a life that doesn’t just feel like “functioning,” like an automaton whirring my way through the day until I power down at night, then I will have succeeded. If I can do my job and contribute to society, I will have won. Then I think of all the patients who don’t have doctors they trust, who aren’t listened to, who aren’t taken seriously, and who aren’t believed.

In this new world of medical uncertainty, chronic illness patients need to form networks and advocacy groups. We need to share experiences with doctors. Was he understanding? Was she ready to help? Is their clinic’s position “deep breathing” instead of proper medication?

We need to participate, no matter how terrible we feel. In any capacity, in any way we can, we need to be our own advocates.

that's me. Makeup and non-pajamas for the first time in almost a month.

J. W. Kain is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents.

You can read more about J.W. 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.