Living Well With Fibromyalgia

By Lynn Phipps, Guest Columnist

In 2016, as a guest columnist for PNN, I shared my story of being diagnosed with fibromyalgia and the offending ways I was treated by the medical community for having an invisible illness.

If my first column was about finding hope, then this one is about getting well and living well with fibromyalgia. I hope that you will be inspired by my story and know that there is a way for you to reclaim your lives from the devastating illness that is fibromyalgia.

For years I felt alone. I am not alone. Neither are you.

In 2003, I knew something was very wrong when I could no longer effectively do my job as a social worker. ​I was in constant pain, had a 24/7 headache and migraines twice a week or more, and could not fully concentrate. Insomnia and anxiety had me awake most nights.

Desperate to get well, I spent half of my paycheck on herbs, supplements, massage, hydrotherapy, acupuncture, chiropractic, ​Rolfing​and Reiki​. Nevertheless, I continued getting worse. When I could no longer afford alternative treatments not covered by my health insurance, my body crashed.

Having suffered from unrelenting migraines for months, my final career ending moment came when my back and neck spasmed, causing me to fall to the floor in my office at work. I remained on hands and knees for 20 minutes before being able to crawl to my desk to pull myself up.

I do not remember driving home, nor did I realize that moment signaled the end of my 20-year career as a social worker caring for those with disabilities (ironic, I know).

I was diagnosed by my doctor with fibromyalgia, chronic pain, severe headaches and migraines, light and sound sensitivity, depression, insomnia, anxiety and PTSD. 

The Guaifenesin Protocol

LYNN PHIPPS

Over the next decade, it became my job to research and find help for my condition. The problem was that none of the specialists looked at fibromyalgia as a cause for all that I was experiencing. And not one physician ever looked at food allergies or diet as a potential cause, even though I have a family history of diabetes.

That is significant because 44% of “fibromyalgics” also have a second and separate disease called hypoglycemia.  Another 15% of fibromyalgics have hypothyroidism, another disease with overlapping symptoms, including fatigue, muscle pain and impaired memory, to name just a few. I am unlucky enough to have this grand trifecta of illness. 

With nearly all hope gone, an internet search for headache specialists in northern California led me to Dr. Melissa Congdon, a fibromyalgia specialist. ​​It was through her that I finally understood that the headaches and migraines were related to the fibromyalgia, and not whiplash from a car accident or a repetitive motion injury from work, as every doctor and specialist had assumed. 

During my first appointment, my fibromyalgia diagnosis was confirmed by Dr Congdon. I was also diagnosed with hypoglycemia. Again, this is significant because about half of us with fibromyalgia also have hypoglycemia, with overlapping symptoms such as fatigue, pain and impaired memory.

In order to get our health back, these two separate diseases require two separate treatments: Dr R. Paul Saint Amand’s Guaifenesin Protocol and his HG Diet for fibroglycemia.,

The protocol requires taking the expectorant drug guaifenesin (Mucinex), which clears airways in the lungs and helps the kidneys reduce the buildup of inorganic phosphates in the body. The low-carbohydrate diet combats low blood sugar, which mimics many fibromyalgia symptoms.

Within 2 months of following the protocol and diet, I began to see improvement in generalized body pain, headaches and migraines, chronic fatigue and brain fog. After 20 months, I got “me” back, and so did my family. 

Many people have mentioned that they do not want to follow the protocol because they have heard that it will make them feel worse. To this we say, “It’s pain with a purpose.”  We strive for finding our own individual dose of guaifenesin that will leave us “functionally” worse, not incapacitated. As long as we do nothing, the phosphates will continue to accumulate throughout the body, causing fibromyalgia symptoms to continually worsen.

The Guaifenesin Protocol will clear the offending phosphates from our kidneys at a rate of approximately​ ​1 year of symptoms in just 2 months. I was symptomatic for 10 years before starting the protocol and had reversed all of my symptoms within 20 months. By the first year on the protocol, I was off of all pain medication. 

My Awakening

The 13 years that I spent bed-bound seem like a bad dream. It was quite an adjustment getting my health back after so much time. It felt as if I’d been existing in a semi-comatose state. While I’d been so ill, my mother passed from pancreatic cancer and both daughters moved out, graduated from college and started their adult lives. 

I had physically been there for all of that, but with such severe fatigue and brain fog, it all had a feeling of unreality to me. Upon “awakening” I was shocked by my appearance, as I’d been only 38 when I got sick and had “awakened” at age 51. My husband and I had to get to know each other all over again. Luckily, we fell in love all over again. 

After the brain fog and severe fatigue had cleared, I wanted to go back to work, but I knew that I could not be a social worker again. Many fibromyalgia symptoms are brought on by physical or emotional trauma. The stress of being a social worker ruled that out, so I decided to do something quite different. I put my years of watching HGTV while bedbound to use by becoming certified in home staging and redesign.  I enjoyed a successful home staging business for 3 years before retiring.

I now spend my days educating others on the Guaifenesin Protocol, helping those still suffering from fibromyalgia get their lives back, too.

(Editor’s note: For a contrarian view on the Guaifenesin Protocol, click here.)

Lynn Phipps lives in northern California. Lynn has created a website called Living with Fibromyalgia to assist beginners in getting started on the Guaifenesin Protocol.

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

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

Why Does Treating Chronic Pain Cost So Much?

By Carol Levy, PNN Columnist

Five weeks ago, I had a deep brain stimulator implanted in a last-ditch effort to relieve my trigeminal neuralgia pain or at least make it more acceptable.

Prior to the surgery, I was required by Medicare to be evaluated by a neuropsychologist. His personal conclusions about me, plus some standardized cognitive testing, would decide if I have the cognitive ability to understand the surgical risks and the procedure itself. He also decides if I am mentally sound enough to tolerate the operation and all that goes with it.

I have not yet received a bill from him, but based on other costs I would expect the 2 to 3 hours I spent with him to cost around $300-$500.

Why is this? Why waste the insurance company's money, my time, the doctor's time, and if I have a copay, my personal money? My neurosurgeon should be aware enough and savvy enough to make such determinations.

I have had other brain implants in 1986, 1987 and 1991. At the time, they were a relatively new procedure and the risks probably worse given their newness.

But my neurosurgeon was fully able to make his own decisions as to my ability to understand and emotionally tolerate the uncertainty and risk.  It was required then, as it is now, that the patient have a trial period of 7 to 10 days between temporarily implanting the device and putting it in permanently. If the patient doesn’t see a benefit, then the implant is determined to have failed and not worth a permanent implantation.

That is all well and good, except for the fact that some patients do not see any benefit or change in the pain for two, three or sometimes up to 6 months.

By having to endure a trial, the patient has to go through 2 surgeries, 2 general anesthesia, and at least 10–14 days in the hospital. The cost to insurance is gigantic. The cost to the patient potentially even higher:

My first implant had no benefit at trial, but my surgeon went ahead with the permanent implantation anyway. After about a month I told him I was having no benefit. We agreed he should remove it. But until I made a date to do so, for some reason, maybe because it never occurred to me to turn it off, I left the implant on.

My trigeminal neuralgia at that point was so bad I had to get my face washed under general anesthesia every few months, as any touch to the affected area of my face was torturous.

One morning, three months after the implant, I stepped into the shower, a drop of water hit my face and there was no pain! I could touch that area of my face and the spontaneous pain and the background constant pain were all gone. Had the implant been removed because of the failed trial, I would never had had the opportunity to have that relief.

How many times have we been told by a doctor to try a treatment, medication or therapy that we have already tried to no avail? How often has insurance required us to try the cheaper drug first, by virtue of "step therapy" also known as "fail first"?

Chronic pain has been estimated to cost the U.S. over $635 billion annually in medical expenses and lost productivity, which is more than the cost for cancer, heart disease and diabetes.

Why is it that chronic pain costs the country so much? Maybe if we got rid of some of these “requirements” and just let doctors and patients do the deciding, the costs would go down.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

This column is for informational purposes only and should not be considered as professional medical advice, diagnosis or treatment. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Tell the Truth About the Opioid Crisis

By Kathleen Harrington, Guest Columnist

There are so many untruths being reported about this false opioid crisis. I never read the truth about the REAL problem.

I’ve been a chronic pain patient for over 25 years, living with chronic cervical pain, degenerative disc disease, cervical lordosis, stenosis, lumbar scoliosis and bone spurs. Like so many thousands of others, I had my pain medication and quality of life ripped from me.

None of my questions were answered and I was never given a reason why I was losing my meds. I was ignored as the doctor turned and walked out of the room.

I had great pain control for 25 years. I followed all the rules, passed all the drug screens, never tried to refill my scripts early and never claimed they were “stolen” to get more. Now I am the patient that no one wants. As soon as it is known that I need pain meds, a wall goes up.

The medical profession tossed us all in the garbage. The persecution of people with chronic pain is everywhere in this country. Prescription meds are not the problem and never were.

Now I see there are doctors asking for donations from us in their fight against being prosecuted by the DEA simply because they write a high number of valid opioid prescriptions for their patients.  

Where were they when the CDC Guidelines came out in 2016 and most doctors took them as new laws? They certainly didn’t have our backs then.

KATHLEEN HARRINGTON

And what about the threatening letters the DEA sends to physicians about prescribing controlled substances? ILLEGAL drugs are the drugs killing people! Instead of fighting the real fight, chronic pain patients, the disabled and our vets have been the scapegoats. We have been denied the medications that allowed us to have productive lives, raise our kids, work and take care of our homes, just have a nice life with our pain controlled. Who will tell the truth finally? 

We have followed the rules with our meds and this country is catering to the addicts with compassion because they have an addiction. Are you kidding me? Chronic pain patients don't get high off their meds. We take them to live without pain as much as we can.

The medical profession and the rule makers in this country are despicable. The overdose deaths are not from patients who have been taking these meds the way they have been prescribed for years and decades in some cases. Tell the truth!

Heroin is hitting the streets at an alarming rate and this country is okay with that. Something very wrong here. Very wrong. Could it be that the opioid epidemic that started with local news showing junkies nodding off (or dead) in their cars with little kids in the back seat was blamed on pain patients because we can be found with the click of a mouse?

My God, in Pennsylvania there will soon be a “safe injecting site” where addicts who have purchased their illegal heroin can go and shoot up!  Just in case they overdose on too much or tainted heroin, they can be revived. All the sympathy is for the poor addict who CHOOSES to do a drug that they know is addicting or could kill them in seconds.

We did not choose to have conditions that cause us pain. We just want to enjoy our lives, family and contribute to society. If a chronic pain patient goes to the ER with intractable pain, we are turned away and literally labeled drug seekers and addicts in the system. The addict who goes to the same ER is treated with compassion and offered treatment.

For myself, I am not confident that things will change. The insurance companies and the doctors’ malpractice insurance are now dictating what patients can have and how much. The state licensing agencies are also advising what meds can and cannot be prescribed.  

I found a medication that worked very well on my neck pain and constant muscle spasms, but I am not allowed to have it any longer. The reason is that this medication is, along with many others, abused on the street. That is exactly what I was told. Way too many people are deciding what is best for me, and it is not my doctor. She really has no say in what she can prescribe to me.  

I really don’t have any hope of enjoying this stage of my life with proper pain control. After working all my life, I am looking at years of suffering. This treatment is against our human and civil rights, but no one seems to care. Seems we are nothing but a burden on this country and the healthcare system.  

How many more chronic pain patients who have had their meds yanked from them with no warning or explanation have to commit suicide from uncontrolled pain? 

Kathleen Harrington lives in Michigan.

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

This column is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

WWE Superstars Use Stem Cells to Smackdown Pain

By A. Rahman Ford, PNN Columnist

As a child, I was a big fan of professional wrestling. While I don’t follow it as religiously as I used to, I have noticed a rather interesting trend. Several former wrestlers are opting for stem cell therapy to heal painful injuries. And some travel to foreign countries to get stem cell treatments they can’t get in the U.S.

Many people consider professional wrestling a fake sport, but to wrestlers their injuries are very real. Bleacher Report’s Ryan Dilbert has reported on the toll wrestling can take on the body.  He recalled how Diamond Dallas Page was “power bombed” by Kevin Nash, rupturing two vertebrae in his back.  Page was injured so badly he couldn’t finish the match.

"I was in excruciating pain," Page said. "I was on my back, and I crawled to the corner. I didn't go back in the ring."

Three-time World Wrestling Entertainment (WWE) women’s champion Beth Phoenix once finished a match with a broken jaw.

"Fans may see us once or twice a year," said Phoenix, who is now retired. "They don't realize that we go on these grueling tours. We're on the road 300 days a year. There's no recovery time. It's a test of your physical and mental endurance."

A 2014 study in the journal PLOS One found that professional wrestlers had “an alarmingly high premature mortality rate.” Wrestlers were 4.5 times more likely to die than the general population. The authors cited chronic pain and drug addiction as likely culprits.

“It is reasonable to assume chronic musculoskeletal injuries resulting in abuse of pain-relieving prescription drugs play a role in the premature drug-related deaths and possibly suicide among some wrestlers. It is also plausible that the painful injuries are self-treated with high doses of non-steroidal anti-inflammatory drugs (NSAIDs),” they said.

Consider what happened to these three professional wrestlers:

Former Olympic gold medalist Kurt Angle became addicted to painkillers after he fractured his back. At his worst, Angle was taking 65 extra-strength Vicodin a day.

Former WWE Superstar Lance Cade became addicted to hydrocodone after suffering a shoulder injury. He died six months after completing a drug rehab program, with hydrocodone found in his system at the autopsy.

Former WWE Superstar Ashley Massaro committed suicide in May of this year. The 39-year old suffered from migraines and bouts of depression, which she maintained were a result of wrestling injuries.

“WWE used narcotics as a tool to allow me and other wrestlers to perform through our injuries. If we took enough pills the pain went away (temporarily) and we were able to wrestle. Obviously, this worsened our injuries and required us to take more pain medication the next time,” Massaro said in an affidavit for a recently-dismissed federal lawsuit.

‘Substantial Benefit’ From Stem Cells

Some professional wrestlers are turning to stem cell therapy as an alternative to pain relievers. WWE Superstar Ronda Rousey received stem cells to treat an ACL injury to her knee.  In a documentary, Rousey said the damage to her knee was so severe that for several years she could not even comfortably step backwards. Rousey says stem cell therapy “really helped a lot.”

IMPACT Wrestling World Champion Brian Cage recently traveled to Colombia for stem cell treatment for a back injury.

“The injury was awful. One of the most painful moments of my career. I literally thought my career might be over,” Page told the Lords of Pain. “I was doing everything under the sun to try and recover from that, including going to Columbia and getting the stem cells, and I do believe it did have a substantial benefit to it.”

Wrestlers Melissa Santos, Rey Mysterio, Ryback and Angle also made the trip to Colombia for stem cell treatments. Ryback says he is now 100% healed. And Angle recently told fans on Facebook that he’s doing better.

“My shoulders feel great. My neck and back are struggling a bit but I’m optimistic about them getting better just like my shoulders. It usually takes 3-6 months to feel improvement. It’s been 2 months,” Angle said.

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

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

This column is not intended as medical advice and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

My Healing Journey With Chronic Pain

By Mia Maysack, PNN Columnist

The first time people told me that pain begins and ends in our minds, I was just thankful there wasn't a comic book bubble over my head -- demonstrating my thought of punching them in the face.  

But I sat there to humor them, hooked up to a machine that measured my heart and other vital signs. The irony in that moment is that the provider told me to purposefully think of something upsetting to see how I’d respond. 

I could see on the screen that my blood pressure increased. I remained polite while shoving the thought aside as to how draining this office visit was and whether it was a complete waste of time. It’s so disheartening to live like we do in the first place, but then to have an appointment that makes you feel even worse than you did on arrival.

After the Doc realized I was upset, it was brought to my attention that if I'm in need of "that sort" of help I should see another type of doctor. It got even better with the suggestion on my way out the door that I should “be positive and try visualizing an ocean -- that helps!"

That’s when I made the decision to incorporate my medical background with my passion for healing and began venturing into holistic health.

Part of the training to become a “certified life coach”' is to get one for yourself. It felt awkward initially, preparing to connect with a stranger.

But between being fed up with the traditional route and reaching a point of desperation where I'd do just about anything, this connection would serve to be one of the most important contacts of my life.

My career plans had experienced multiple screeching halts over the years, whether I attempted nursing or teaching. I went back and forth quite a bit, trying to find a way to make either of them work in any capacity. But the outcome remained the same because of my physical pain, chronic fatigue and persistent illness.

Even though I am no longer able to run the hospital floor for multiple shifts or teach a classroom of 30 students, I do still possess my course work in medicine and years of work experience, not to mention firsthand experience as a patient with the healthcare system.

It was during the first phone call with my coach that the concept of energy was shaped in a new way. It was explained how our bodies not only feel and respond to experiences, but also essentially tracks them. They get stored in our physical beings and we carry them with us, for better or worse.

I began reflecting on everything I'd planned on telling this person. How I got sick at a young age and almost died. How I went through years of rehabilitation while losing the ability to pursue my passions in life. How I’ve had relentless pain no one could possibly begin to fathom. And that I'm still mourning identities that once made up who I am. 

It struck me that none of that mattered anymore because what I chose from that moment forward is what really counts.  

At a meeting recently, I was asked about my healing journey. I explained that we must first reach our lowest point of being sick and tired of being tired and sick, and then consciously move forward — making the decision to do whatever is necessary for our own sake no matter what.

I showed them what this looked like for me: bawling my eyes out in a fetal position on the cold hard floor, begging the universe for relief, and not knowing how or if I'd be able to go on. 

We're enduring a personal hell on a continuous basis that most regular folk wouldn't be able to handle.  As far as emotions getting the best of me, they don’t anymore because I've grown to be more self-aware through the inner work that I've committed myself to.

It hasn't fixed or cured anything, and it'll continue to be a pursuit for the rest of my days. But I feel safe within my body and mind for probably the first time ever. Security is another thing we can lose as part of the pain experience. 

Nothing is nor will it ever be perfect, but I have come an extraordinary long way. I'm proud of that and believe in these concepts. I've never had more physical discomfort than I do these days but with these tools, I've also never been able to manage so well until now.

We must re-shape our perception of healing and recovery on the other side of fear. And when we're able to make it through the darkness, it then becomes our responsibility to light the way for others. It doesn't make it any easier, but we are stronger together.   

Mia Maysack lives with chronic migraine, cluster disease, fibromyalgia and arthritis. Mia is a patient advocate, the founder of Keepin’ Our Heads Up, an advocacy and support network, and Peace & Love, a wellness practice for the chronically ill and those otherwise lost or hurting.

The information in this column is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Consumer DNA Tests Do Not Accurately Predict Disease

By Dr. Lynn Webster, PNN Columnist

Three years ago, I gave my family members DNA kits as Christmas gifts. I thought the genetic health aspects of the test would be an entertaining exercise -- a bit like visiting a psychic who would read tarot cards to predict the future. I didn’t think of it as a serious medical test, and I made sure my family understood that.

These kits have become very popular. More than 26 million people have taken an at-home genetics test, hoping to learn more about their ancestral background, along with their risks of developing certain diseases. But the tests may not live up to either of those expectations.

The U.S. Government Accountability Office (GAO) sent a report to Congress in 2010 alleging that some DNA testing companies used deceptive marketing and other questionable practices. 

The GAO stated that results from DNA tests were “misleading and of little or no practical use.” Their investigation also uncovered the fact that different DNA testing companies provided different results from the same sample. 

Not only were the test results dubious, but the companies made some deceptive claims. One company alleged the results from their testing could help cure diseases. Another claimed the data could predict at which sports a child would excel.

Admittedly, the accuracy of the tests has improved since 2010, but the tests still are, at best, imperfect.

Our genome (the whole of our hereditary information, encoded in our DNA) contains about three billion genes. Of those, only about 20,000 are responsible for disease. But we are more than our genes. Whether or not we will get most diseases depends on a combination of our genes and environment. This interaction of environment and genes is what we call a phenotype.

Of course, there are genetic mutations that are responsible for specific diseases. Single-gene mutations are responsible for about 10,000 diseases, the majority of which are considered rare. Some of the more common single-gene disorders include sickle cell anemia, cystic fibrosis, phenylketonuria, and Huntington's disease.

However, there is no guarantee that direct-to-consumer DNA kits are capable of detecting all common single genetic mutations. Moreover, the absence of a reported mutation from these kits does not mean the mutation does not exist.

Testing may uncover some benign and interesting traits, though. For example, some genetic kits (but not all) can tell you if you have a gene associated with how your earlobes are shaped, whether your urine has an offensive odor after you eat asparagus, or if you are inclined to dislike cilantro.

The accuracy of the health-related portion of the tests is improving. It is now possible to test for genes that predict a person's risk for certain types of breast and prostate cancers. However, placing too much weight on the results of those tests can be dangerous. For example, the tests do not screen for all types of breast cancer, which can lead consumers to falsely conclude their risk of all breast cancers is low if their test results do not indicate a gene mutation associated with breast cancer.

At best, the types of DNA tests that provide information on single-mutation diseases should be accompanied by appropriate genetic counseling. Since most diseases are based on multiple genes and environment, a genetics counselor can help put the test results into perspective.

Deciding how to use the information may be more important than knowing the results of the test. In medicine, we never order a test unless it will help us provide better care for our patient. This may be an important principle to apply here as well.

Privacy Is a Big Concern

We should also be very concerned about how our DNA data will be stored and used. The testing companies' DNA databases can be hacked by people with nefarious motives, or shared with insurance companies or law enforcement. Laws protecting consumers are evolving, but clearly, at-home DNA tests expose consumers to unknown and, perhaps, unintended consequences.

DNA tests were first pitched to consumers as a way in which they could learn about their ancestry. However, the reference data sets were largely European and less accurate in showing lineages in other areas of the world. If your roots were Asian or African, the reports were less likely to accurately reflect where your ancestors lived.

Over time, the data sets have improved and expanded, so consumers with non-European ancestry may get more accurate information about their heritages now than they would have previously. That trend will likely continue.

Whether DNA kits are mostly a gimmick, I cannot say. But it is important to recognize their limitations in providing trustworthy information about our health or ancestry. Certainly, we should not base health decisions on their results, and I would think twice about paying for the privilege of delivering my DNA profile to a for-profit company.

Maybe this year I’ll just give everyone tarot decks.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is the author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.”

You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences or Pain News Network. 

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.

Criminalizing Pregnant Women for Drug Abuse Is a Terrible Idea

By Dr. Lynn Webster, PNN Columnist

According to Guttmacher Institute, nearly half the states in the United States are willing to punish pregnant women in order to spare their babies the agony of being born with Neonatal Abstinence Syndrome (NAS). Ironically, their efforts are having the opposite effect.

Twenty-three states and the District of Columbia have passed legislation that criminalizes substance abuse during pregnancy. Additionally, 25 states and the District of Columbia require healthcare providers to report expectant mothers who may be illegally using substances. In 8 states, pregnant women who are suspected of substance abuse must also undergo drug testing.

The huge number of babies born to mothers dependent on opioids has driven policymakers to find ways to deter pregnant women from abusing opioids.

But new research points out there are unintended consequences to criminalization. And it provides lawmakers insight on how to create more effective policies that result in positive, not punitive, outcomes.

A study published recently in the journal JAMA Network Open examined 4.6 million births in the U.S. from 2000 to 2014. During this time, the diagnosis of NAS increased seven fold.

The study was conducted by the RAND Corporation, a nonprofit research institute that analyzed 8 states with punitive policies for drug-abusing pregnant women. The research was funded by the National Institute of Drug Abuse.

According to a RAND press release, Arkansas, Arizona, Colorado, Kentucky, Massachusetts, Maryland, Nevada and Utah adopted either punitive penalties for drug use during pregnancy or policies that required health care providers to report pregnant women with suspected illegal substance use.

RAND researchers found that the annual rate of NAS increased in the 8 states, from 46 cases per 10,000 live births to 60 cases per 10,000 after punitive policies were enacted. That is an alarming 30% increase in NAS cases.

This is not the first study that has shown political efforts to curb opioid addiction and overdoses have not had a positive impact. We have seen the harm associated with forced tapers and dose limits adversely affecting millions of pain patients.

It is hard to understand why these destructive policies are put in place, but it may be because policymakers are misinformed or biased. Regardless, it reflects a systemic flaw for governments to fail to evaluate the efficacy and outcomes of the very policies they create.

Addiction Is a Disease, Not a Crime

How best to address addiction has long been the subject of debate. For example, a state hospital in South Carolina illegally obtained the diagnostic tests of pregnant women in an effort “to obtain evidence of a patient's criminal conduct for law enforcement purposes” (this was the case of Ferguson v. Charleston).

Unfortunately, some people still believe that addiction is a volitional or character flaw that should be recognized as criminal behavior rather than a disease.

Indisputably, addiction is a complicated, life-threatening disease. Treating people with the disease as criminals is the worst possible approach. Most experts in the substance abuse treatment community have known this for years. Fortunately, the RAND Corporation has now provided evidence of how this applies to babies born to women who abuse opioids. 

Typically, lawmakers do not evaluate the impact of the policies they pass. There have been many policies over the past few years that were implemented by state legislatures, healthcare organizations and insurance companies that were intended to reduce harm from opioids. Almost no one has attempted to measure their effectiveness or unintended consequences.

Fortunately, in this case, we have an exception. We have a unique opportunity as a result. The RAND study should provide policymakers with insights on how to more effectively address the problem of substance abuse during pregnancy.

Threatening to punish a pregnant women does not decrease the number of women who abuse drugs. However, it does scare many of them away from seeking the treatment they need and can deter pregnant mothers from seeking prenatal care.

Pregnant women who are opioid-dependent frequently use other illegal substances that risk the health of their babies. There should not be more barriers for pregnant women to receive prenatal care. Infants born after exposure to opioids often require prolonged hospitalizations to manage their needs, with those cumulative costs totaling more than $500 million, according to the RAND study. More importantly, babies with NAS suffer needlessly.

It should go without saying that every policymaker wants to solve problems and not create additional harm for new mothers or to babies born to them. Hopefully, this study will be used as it is intended: to help create policies that actually reduce harm from opioids. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is the author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.”

You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences or Pain News Network. 

Little Evidence to Support Rescheduling of Tramadol

By Roger Chriss, PNN Columnist

The consumer watchdog group Public Citizen has petitioned the FDA and DEA to “upschedule” the opioid painkiller tramadol. The DEA set tramadol as a Schedule IV drug in 2014, and the petition urges moving it to a more restrictive Schedule II, on the same risk level as hydrocodone and oxycodone.

The petition claims that tramadol is “an increasingly overprescribed, addictive, potentially deadly narcotic.” But the basis for this claim and the assumption that upscheduling will help are problematic.

The CDC reports that there were approximately 1,250 fatal overdoses involving tramadol in 2017, the most recent year for which data is available. Like most fatal overdoses, tramadol deaths often involve multiple drugs, so it’s hard to draw any conclusions from those deaths.

Tramadol is complex, with a highly variable patient response. Some patients have such a strong negative reaction to the drug that they refuse to take it again. Others find it too sedating at high doses or too weak to provide adequate pain relief. Abuse, addiction and overdose can also occur with tramadol.

Recently Harvard Health looked at a JAMA study on the risks of using tramadol versus other pain relievers. Tramadol was found to have a higher risk of death than anti-inflammatory medications such as naproxen (Aleve), while people treated with codeine had a similar level of risk.

“However, because of the study’s design, the researchers could not determine whether tramadol treatment actually caused the higher rates of death. In fact, the patients for whom tramadol is prescribed could make it look riskier than it truly is,” said Robert Shmerling, MD, an editor at Harvard Health.

Unintended Effects of Upscheduling

Understanding the effects of upscheduling is tricky. In 2014 the DEA reclassified hydrocodone (Vicodin) from Schedule III to the more restrictive Schedule II. The reclassification accelerated a trend that was already underway – hydrocodone prescriptions had been falling since 2011.

But there were unintended consequences to upscheduling. A recent University of Texas study found that decreases in hydrocodone prescribing after its rescheduling “were larger in patients being treated for cancer.”

Anotherr study found that upscheduling led to a substantial decrease in hydrocodone prescribing in hospital emergency departments, but that was offset by an increase in prescriptions for codeine and anti-inflammatory drugs.

Upscheduling hydrocodone has also had a negligible effect on overdoses, which are largely caused by illicit fentanyl, heroin and other street drugs, as well as non-opioid medications such as Xanax.

Similarly, predicting the impact of new prescription opioids is difficult. Breathless warnings about the opioid Zohydro, which was approved as a Schedule II drug in 2014, proved false. “There was no great surge of overdoses” after Zohydro was introduced, as Chris MacGreal wrote in his book “American Overdose.”

Fears about opioids are also delaying the introduction of safer medications. The experimental opioid NKTR-181 has less abuse potential than traditional opioids, but its approval is uncertain because the FDA has stopped all advisory committee meetings on opioid analgesics.

Public Citizen ignores all this. It also fails to mention other actions the FDA could pursue, from making naloxone into an over-the-counter drug to improving access to medication-assisted therapy for opioid use disorder. There’s no petition to have the DEA “nix the wavier” for buprenorphine (Suboxone) to make it more widely available or to have the federal government promote the Pain Management Best Practices Inter-Agency Task Force report.

Finally, there’s no call to monitor outcomes. As PNN has reported, opioid tapering has had tragic unintended consequences. And a new Cochrane review on the effects of educational and regulatory efforts targeting prescribers was unable to draw any conclusions “because the evidence is of very low certainty.” The authors could find only two relevant studies that assessed prescribing policies adopted in the 1990’s.

There are good reasons to be cautious about tramadol. But there are probably better ways than upscheduling to reduce risks and improve outcomes. As a result, Public Citizen's petition seems quite narrow and unlikely to help with the overdose crisis.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

This column 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.

EPA Decision Will Stifle Animal Research on New Pain Treatments

By Dr. Lynn Webster, PNN Columnist

People in pain rely on scientific advances to find safer, more effective alternatives to opioids. Animal research is key to many of our advances in drug development.

But a recent announcement from the Environmental Protection Agency threatens to change that -- by inhibiting science’s ability to replace opioids and create new life-saving pain interventions.

EPA administrator Andrew Wheeler announced in September the agency's decision to "significantly curtail its reliance on the use of mammals in toxicological studies conducted to determine whether environmental contaminants have an adverse impact on human health."

The EPA plans to reduce funding for most mammal studies by 30% by 2025 and eliminate them altogether by 2035.

The agency also announced that five universities would receive $4.25 million in federal funding to develop alternatives to reduce or replace the use of animals in research.

Ostensibly, Wheeler worries about the potential mistreatment of animals used in testing. But Natural Resources Defense Council (NRDC) scientist Jennifer Sass believes he may be politically motivated.

“The Trump administration appears to be working on behalf of the chemical industry and not the public,” Sass said in an NPR interview.

Most likely, the American Chemistry Council, which represents chemical companies, would prefer to eliminate mammal studies that could prove the toxicity of their products. Wheeler, however, claims he hasn't talked to "a single chemical company about this."

According to The New York Times, the American Lung Association, the American Heart Association, and the American Medical Association disagree with Wheeler's strategy. Lab-grown cells and computer modeling can reduce the need for animal testing. But Penelope Fenner-Crisp, a former senior official at the EPA, believes 2035 may be too soon to ban all animal studies.  

"There's currently no substitute for [testing] some of the more complex and sophisticated toxicities, such as the effect of chemicals on animals' reproductive systems," she said.

The NRDC, an environmental advocacy group, also opposes the EPA's plan to ban animal testing on the grounds that it could make it harder to identify toxic chemicals and protect human health.

Animal research has played a key role in developing many new technologies, including MRIs, ultrasounds, CT scans, and new surgical techniques. It has also played an integral role in the development of vaccines, pain relievers and other medications, as well as life-saving emergency care.

“Virtually everything a doctor, nurse, veterinarian, veterinary technician, paramedic, or pharmacist can give the injured or sick was made possible by animal research," says Dr. Henry Friedman, a neuro-oncologist who leads the opposition to the EPA decision.

Dr. Friedman says sophisticated computers can be helpful in many areas of scientific research, but they "can't predict everything a new drug will do once inside you." He also maintains that laboratory animals are treated humanely under strict guidelines.

Speaking of Research, an international advocacy group that supports the use of animal research, believes the EPA's plan endangers human, animal and environmental health.

"This directive flies in the face of the EPA’s mission to 'protect human health and the environment' and 'to ensure that national efforts to reduce environmental risks are based on the best available scientific information.' Animal-based research and testing is critical for understanding how new chemicals and environmental substances affect human and non-human animals," the organization said in a statement.

Many of us in the scientific community oppose the EPA’s decision because it could slow drug development and threaten our ability to find safer and more effective treatments for pain, addiction and other diseases. If the EPA decision is sustained, it will be a major obstacle to the advancement of medical science.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is the author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.”

You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences or Pain News Network.

How to Control Anxiety and Pain Through Meditation

By Dr. David Hanscom, PNN Columnist

Every sense in your body has a threshold that indicates danger – hot, cold, bitter, loud, bright, sharp, pressure, burning, nausea, etc. Without that immediate feedback from your senses, you could not protect yourself from whatever the danger is.   

When any physical threat is sensed, your body secretes chemicals and hormones to increase your chances of survival. They include cortisol, adrenaline and histamines. This chemical bath affects every cell in your body and you are on “high alert.” The feeling generated is anxiety and it is not a psychological reaction. 

Humans have a problem in that mental threats manifested by unpleasant thoughts are processed in similar area of the brain and cause the same hormonal response. But since we can’t escape our thoughts, we are subjected to sustained levels of these chemicals. One of the effects is increasing the speed of nerve conduction. All of our senses are heightened, including various types of pain.  

Environmental Awareness 

Being aware of your senses – known as environmental awareness –-- is a strategy that allows you to switch sensory input from racing thoughts to another sensation. It doesn’t matter which sense you choose.

I practice one that I call “active meditation” or “meditation on the run.” Being aware of your senses has a calming effect on your nervous system. Active meditation enabled me to be a calmer person and more effective in my work.  

As a retired spine surgeon with many years of experience, I was often referred complicated spine problems that required complex surgeries. Sometimes those surgeries resulted in complications for the patient. Although I was committed to having no complications from the first day I walked into the operating room, there was a point a few years ago when I faced up to the fact that I hadn’t been able to eliminate them. My own thoughts were interfering with my work.  

The most common interferences I felt during surgery were frustration, anxiety, distraction, complacency, and, especially, being in a rush to finish. They all detracted from the consistency of my performance. This led me to develop a somewhat defensive mindset. If I could get through the week without a surgical complication, it was a huge relief.  

Learning Active Meditation

Things changed when I decided to enlist the help of a performance coach to help me reduce any mistakes in surgery. That was a major turning point in my professional life. I brought my coach into the operating room and clinic so he could better understand my world. For 18 months, he and I underwent regular debriefings and coaching. I began to use active meditation in the operating room. 

This meditation model is not based on suppressing interference – for instance, if you’re frustrated, you don’t pretend otherwise – rather, you face these frustrations and then detach from them. Using tools and approaches that have been employed for centuries in the practices of meditation and mindfulness, I learned to identify any interference either before or during surgery, and then let go of it.  

This is how it worked: Each surgical morning, I woke up and assessed how I was feeling. Like everyone, my feelings ranged from calm and relaxed to tired and anxious. Then, I immediately started sensing every smell, touch and taste possible. I felt the water on my back in the shower. I smelled the coffee. I also reminded myself that although that day’s surgery is “just another case” for me, it’s one of the most important days of my patient’s life.  

I continued this process in the operating room. I carefully arranged the room, talked to each member of the surgical team, and reviewed the imaging studies. I was focused and immersed in what’s right in front of me, when previously I’d rush into the operating room at the last minute just before making the incision. 

During surgery, awareness allowed me to perform my next move at an optimum level. I felt my grip pressure on each surgical tool; noticed the shape of the contours of the anatomy; felt my shoulder and arm muscles stay relaxed; and just watched the flow of the case.  

If I felt any disruptive emotions intrude into my state of mind, I quickly practiced my environmental awareness techniques in order to re-focus. I learned to be more fully engaged on a higher percent of cases, so I could “program” myself into the “zone.” 

Since I started practicing active meditation, my complication rate in surgery noticeably decreased. For instance, from 1999 until 2003 I had an “acceptable” 9% rate of inadvertently entering the dural sac (a sack of fluid surrounding the brain and spinal cord). After I started using meditation, I made this mistake only two or three times a year, which is less than one percent. 

Surgery became a wonderful experience for me. I eagerly looked forward to Monday instead of Friday. I committed to getting a good night’s sleep before my surgeries.  If I woke up “wired” and uneasy, I slowed down until I felt relaxed, no matter how many things were on my to-do list.  

I continue to practice active meditation daily. Environmental awareness is more difficult outside the operating room, in the less controlled areas of my life, but it is still my go-to active meditation.   

One tool I use to practice awareness is my “to do” list. I remind myself that this list is an expression of my life, and so I practice being aware as I go about each item. For instance, when I have an appointment with a patient, I listen to myself talk to him or her.  I feel the pen on the paper as I jot down notes.  I also practice meditative techniques. such as watching the disruptive thoughts of “need to finish up here, I have other things to do” enter my consciousness and then leave.  

I remember that my goal is to engage and enjoy every second of my “to do” list. It doesn’t always work, but it’s surprising how often it does.

Environmental awareness engages me in the present moment regardless of the circumstances. It is not positive thinking, but just switching the sensory input. With repetition, it has become somewhat automatic. It is a simple strategy that can help the quality of your life, regardless of the level of your pain.  

Dr. David Hanscom is a retired 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 latest book, Do You Need Spine Surgery?, David explains why spinal surgeries are often risky and unnecessary.

This column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Can Melatonin Put Your Chronic Pain to Sleep?

By A. Rahman Ford, PNN Columnist

Melatonin is popularly known as the sleep hormone. Less known is its potential to alleviate chronic pain and inflammation.

Melatonin is a natural hormone produced by the pineal gland in the brain. During the day the pineal gland is inactive, but at night it begins to produce melatonin and helps us sleep.

As a supplement, melatonin is widely promoted for its efficacy as a sleep aid. However, its role in reducing inflammation – a major contributor to chronic pain – may be much more important. Many chronic pain conditions are a result of underlying inflammation.

In a recent Nature article, melatonin was called a “master regulator” of inflammation. Several studies have shown that melatonin can regulate activation of the immune system, reducing chronic and acute inflammation.

Research shows that melatonin supplements can modulate inflammation by acting as powerful antioxidants and free radical scavengers. Uncontrolled free radicals in the body can lead to oxidative stress, which can cause inflammation and culminate in diseases that cause chronic pain.

There is a large body of evidence that melatonin is a potent antioxidant, even more potent than vitamins C and E.  It’s been successfully used to treat fibromyalgia and irritable bowel syndrome, diseases associated with high levels of oxidative stress.

Melatonin is also a strong antimicrobial, and emerging research shows that some chronic inflammatory conditions may be caused by infections. One study found melatonin effective in treating certain drug-resistant bacteria such as Staphylococcus aureus, Pseudomonas aeruginosa and Acinetobacter baumannii. Similar results were found when testing ten different pathogens, including Escheria coli and Salmonella typhinurium, with melatonin.

Melatonin and Chronic Pain

A therapeutic role for melatonin in the treatment of painful autoimmune conditions has been theorized.  A 2013 study noted that melatonin plays a role in the pathogenesis of conditions such as multiple sclerosis and systemic lupus. In animal models of these diseases, melatonin supplements were found to have protective effects. A 2019 review concurred, concluding that melatonin can serve as a new therapeutic target in treating autoimmune diseases.

A review of the scientific literature on chronic pain syndromes found evidence of melatonin’s efficacy as an analgesic in several conditions including fibromyalgia, irritable bowel syndrome and chronic back pain. Studies also showed melatonin’s effectiveness in treating cluster headaches ad tension headaches.

A small clinical trial of 63 females with fibromyalgia found that melatonin, alone or in combination with the antidepressant amitriptyline, significantly reduced pain when compared to amitriptyline use alone. The authors concluded that the melatonin treatment had a direct effect on the regulation of pain.

There has been some evidence that melatonin supplements can help reduce lower back pain. In a 2015 study, researchers found a significant reduction in pain intensity during movement and at rest in patients with back pain.

Melatonin has also been successful in treating migraines. In an open-labeled clinical trial of 34 patients suffering from migraine, 30 mg of melatonin given 30 minutes before bedtime was found to reduce headache intensity as well as frequency and duration, with significant clinical improvement after one month.

Although the scientific evidence is only slowly emerging, melatonin is a widely-available, inexpensive and safe supplement that may aid you in your fight against chronic pain.

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

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food.

The information in this column is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

An Open Letter to a Loved One From a Chronic Pain Sufferer

By Mia Maysack, PNN Columnist

The sun is shining and the birds are singing. It’s a beautiful day.

I open the door to let my doggy daughter out and the brightness peers through like a lightning strike straight to the hypothalamus. I'm struck by intense searing pain that feels like a hot poker through my eye -- otherwise known as a cluster headache attack.

I try not to dwell on the inevitable reality of the hearty serving of migraine that's sure to make its encore appearance soon.

The next plan of action is to get my head into an ice bucket, but I first must draw all the blackout curtains in every room.  The day is done, at least for now, and I am at the mercy of these ailments. There's no way of knowing how long they'll last so I focus on breathing, as I attempt to calm my nervous system.

Me writhing in pain is the unfortunate greeting my loved one often receives after his long days of working in the world, while I’ve remained inside this cave, putting in long hours at the hardest job I've ever had -- surviving this. 

When we initially got engaged, I planned the entire wedding in only two weeks because I must take full advantage of the moments when I'm at my most able. At the time, I was still making a nursing salary and able to contribute my fair share to the festivities.

Much like any other couple, we had plans. To begin a family, travel the world and support one another in making our dreams come true.  

As things worsened through the years and pain levels heightened, my condition reached a point where even hugging hurt me. This was a very difficult loss and forced me to reflect on the situation – and what being and having a soul-mate looked like.

There are days it is almost impossible to take care of myself, and as heartbreaking as the realization initially was, the decision not to commit my life to another was made. 

This didn't change the fact that this person is my best friend. We have shared the purest form of intimacy, which is remaining present for one another throughout the worst of times -- when it's not ideal, convenient and downright hard.

Whether in the form of sleepless nights at the ER, helping to brush my hair, holding onto me to help my balance, or slowing his pace so I can keep up -- regardless of an official relationship or title that others understand -- he is and always will be my family.

I appreciate him for many reasons, one being that he accepts there's only so much I can do. He does not consistently attempt to “fix” me, because we've both learned the importance of surrendering to the current moment while always maintaining hope in better ones to come.

By remaining devoted to his presence in my life, he's making a conscious effort to reassure me that I am not alone — never losing patience or becoming resentful no matter how many times I have to postpone plans or cancel commitments.

He sees me as more than just the "Sick Girl." He's complimentary of who I am outside of these illnesses, as well as the warrior I've become as a result of them.  

Perhaps I won't ever have a glorious wedding and maybe this isn't going to be a white picket fence fairy tale. But to have someone who understands what I have to offer and what I don't, respects my need for freedom, and displays selfless acts of sacrifice is one of the greatest gifts in my life. Shouldering these burdens together is the truest testament to love I have ever experienced. 

It's beautiful to have that mutual acceptance, free from judgement or expectation, to simply just be who and what you feel. I thank the universe for this person, as well as the others in my support system.

Mia Maysack lives with chronic migraine, cluster disease, fibromyalgia and arthritis. Mia is a patient advocate, the founder of Keepin’ Our Heads Up, an advocacy and support network, and Peace & Love, a wellness practice for the chronically ill and those otherwise lost or hurting.

The information in this column is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Survey Repudiates Canada’s Pain Care Policies

By Dr. Lynn Webster, PNN columnist

A recent survey by the Chronic Pain Association of Canada (CPAC) demonstrates all too well that our Canadian neighbors are sharing in the misfortune of America’s man-made crisis in pain care.

The online survey was distributed to patients via social media during a two-month period in the summer of 2019. CPAC received 740 responses from all 10 provinces and the territory of Nunavut. Key findings add to the growing evidence that people in pain are suffering from policies aimed at reducing access to pain medication.

• Almost two-thirds of respondents (64%) reported they have not had adequate pain control in the past two years

• A similar number (66.2%) feel discriminated against and degraded because they require opiate medicines to cope with severe pain

• A third of patients (33.5%) have either been abandoned by their doctors or their doctors have refused to continue prescribing for them

• Close to half (47.8%) have been forced against their will to taper their doses

• Nearly 45% either have deteriorated relations with their medical providers or no longer have a doctor

• Almost 40% were not adequately treated for pain in emergency rooms

Substitutes for opiates have not helped. About 70% of patients surveyed say they are more disabled, can do less with their lives, and their quality of life has declined.

Desperate Solutions

Almost 40% of patients have considered suicide because of the increased pain, while 5.4% have actually attempted suicide. A third of respondents (33.5%) reported that they know of someone who did commit suicide because of increased pain.

One other “desperate solution” is that nearly 10% of patients have substituted dangerous street drugs for what they previously received as safe prescriptions. Nearly a third of respondents (30.8%) reported they know patients who are purchasing street drugs for this reason.

Based on these findings, CPAC Executive Director Barry Ulmer penned a letter to Canada's Minister of Health.

"I’m writing on the first day of Canada’s National Pain Week, when the country notes the tragedy of chronic pain, the right of all Canadians to have their pain relieved, and government’s obligation to ensure appropriate and timely care,” Ulmer wrote.

“Yet two million Canadians with ongoing pain serious enough to warrant treatment with opioid analgesics still suffer profoundly — and pointlessly — because federal policy dismisses their needs. In today’s opioid-averse regulatory climate, their access to care shrinks precipitously as Canada’s pain specialists vanish from practice, and especially from prescribing."

Ulmer's letter further describes how people in pain feel that they are being erroneously blamed for Canada’s overdose problem. Many are being forced to taper or discontinue their pain medications. 

The CPAC findings mirror the results of a U.S. survey by Pain News Network which was released on the third anniversary of the 2016 publication of the CDC opioid prescribing guideline.  

In a critique of Canada’s 2017 opioid guideline – which was modeled after the CDC’s -- the Canadian Family Physician reports the guideline has left the Canadian health care system unable to manage its high-dose opioid patients:  

“However well-meaning they are, the 2017 Canadian opioid prescribing guidelines were introduced to a health care system ill equipped to care for patients with chronic pain. 

Without a clear and implementable patient-oriented strategy, combined with universal training in safe and effective chronic pain and addiction management for all health care providers, well-meaning documents like the 2017 Canadian guidelines might inadvertently harm the very people they hope to help."

As in the U.S., Canadian doctors are refusing to prescribe the opioids that patients need and alternative treatments are insufficient. The pharmaceutical industry is being villainized and health care professionals who prescribe opioids are under pressure to inappropriately adhere to a one-size-fits-all solution for pain patients.  

It is understandable that politicians want to reduce the harm from inappropriate use of opioids, but it should not be at the expense of people in pain. This is a human rights issue that must not be ignored.   

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.”

You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences or Pain News Network.

What We Can Learn from Germany About the Opioid Crisis

By Roger Chriss, PNN Columnist  

Germany doesn’t have an opioid crisis. As NBC News reported, 10 times as many Americans as Germans die from drug overdoses, mostly opiates. And while opioid addiction rates in the U.S. have risen dramatically, in Germany they’re flat.

The story of Germany challenges much of the narrative about the American opioid crisis. If addiction moves in lockstep with opioid prescribing, then Germany should have high addiction rates. If prescription opioids lead to heroin use, then Germany should be seeing rising rates of heroin use. And if overdoses are an inevitable consequence of addiction, then Germany should have high overdose rates.

But this is not what is happening. According to a recent PLOS One study, opioid prescriptions in Germany are rising, but there is no “opioid epidemic.”

“Even though patterns of opioid prescription follow trends observed in other developed countries, there are no signs of an opioid epidemic in Germany. Therefore, this review could currently not find a need for urgent health policy interventions regarding opioid prescription practices,” the study concluded.

A report from the European Monitoring Centre for Drugs and Drug Addiction shows that drug overdoses in Germany are falling. There were 1,926 overdose deaths in Germany in 2006 and 1,272 in 2017. Overdoses peaked in Germany over a decade ago.

Rates of drug use in Germany show that cannabis and MDMA (ecstasy) have been trending upward in recent years, amphetamine use is stable, and cocaine use is falling among young adults. In people seeking drug treatment, addiction to cannabis and cocaine are rapidly rising, but opioid addiction fell sharply in 2016 after a rise in the preceding decade.

Yet Germany has the second-highest prescription opioid rate in the world. And if current downward prescribing trends hold in the United States, Germany will have the highest rate by late 2020.

Easier Access to Rx Opioids

But Germany simply isn’t having an opioid crisis, which one expert attributes to the country’s well-established social security network and full health insurance coverage.

“Many specialist pain treatment centres by now will report cases of chronic pain patients with inappropriate opioid therapy, who then have to be weaned off the medication. However these are only isolated cases and there is no increase in inappropriate use of opioids in Germany in general,” Lukas Radbruch, a palliative care physician at University Hospital Bonn in Germany, explained in the BMJ.

Radbruch belongs to an expert committee that regulates and monitors opioid use in Germany.

“In Germany regulations for opioid prescription have been changed throughout the years to allow easier access to these medicines - for example, extending the maximum amount per prescription or the maximum duration of each prescription,” he wrote. “There is consensus in the committee that there is no indication of anything similar to the opioid crisis in the US, and no indication of an increase in inadequate prescribing of opioids in Germany.”

Rhetoric about prescription opioid risks rarely includes the details of prescribing. But it turns out that if patients are given non-opioid options first, then screened and monitored during opioid therapy as is done in countries like Germany, the risks are far lower. The risks are lower still when problems of misuse and signs of addiction are caught early and addressed medically.

In other words, maybe the U.S. has an opioid crisis as a result of doing virtually everything wrong. From excess pharmaceutical marketing and poor patient management to a lack of multimodal pain treatment and addiction care, we almost couldn’t not have had an opioid crisis.

And once the crisis got started, we failed to respond quickly with best practices, in particular the overdose rescue drug naloxone and harm reduction policies. Instead, we embraced doomed tactics like abstinence programs and forced tapering of medications.

The most recent data from the CDC does show some encouraging news. From March 2018 to March 2019, the overdose death rate fell by 2.2 percent. The provisional counts for 2019 show an overall flattening of overdose deaths, but no sustained downward trend.

Most of this progress is in fewer fatalities linked to prescription opioids. But illicit fentanyl is spreading westward, and from San Diego to Seattle a rise in overdose deaths has been seen throughout 2019, much of it caused by counterfeit medication. So the “gains” of last year may quickly evaporate. Fentanyl is cheap to make, easy to distribute, and getting into the entire drug supply. Meth and cocaine are resurging, too.  

The drug overdose crisis is evolving fast. Most overdoses involve multiple substances, often with inadvertent exposure or as a result of counterfeit or tainted drugs. And some are suicides. Now in the vaping outbreak we are seeing the impact of new technologies and new chemicals used in novel ways.

As the RAND Corporation noted in its September report on fentanyl, we need new options fast. Germany’s preventative healthcare, proactive public health monitoring, and coordinated harm reduction policies may provide sound ideas for a sensible response to the rapidly evolving drug crisis in the U.S.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

This column 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.