Indians Manager Battles Back from Chronic Pain

By Pat Anson, Editor

Cleveland Indians manager Terry Francona – who has led the Indians to their first World Series since 1997 -- has struggled for decades with chronic pain from knee, wrist and shoulder injuries.

His story is an inspirational one to pain sufferers who have also dealt with the stigma associated with chronic pain and the use of opioid pain medication.

Francona may be the front runner for American League manager of the year, but it wasn’t too long ago that he was barely able to walk after complications from knee replacement surgeries left him in severe pain with blood clots and staph infections.

His managerial career also seemed finished after rumors surfaced that he abused pain medication while managing the Boston Red Sox.

Francona was upfront about his health problems and use of painkillers like oxycodone and Percocet in his book with Dan Shaughnessy; “Francona: The Red Sox Years.”

“I think I probably should have died with all that happened,” Francona said of one extended hospitalization in 2002, when his right leg almost had to be amputated.

“There were a couple of nights in the hospital where I was thinking, I can’t take this anymore.  The nurses would come running in because I’d stop breathing. I was in bad shape. There were people around who did not think I was going to make it. I know I came real close to losing the leg.”

Pain medication helped him survive the ordeal.



“I lived on it at that time,” Francona recalled in the book. “When I left the hospital, I was on heavy-duty drugs, and it was tough.”

Francona recovered and resumed his career as a baseball coach. In 2004, he was hired as manager of the Red Sox and led the team to its first World Series title in 86 years. They added a second title in 2007. Through it all, Francona was still in pain and taking so much medication he would sometimes joke about it. He also started hoarding pain pills.

When one of Francona’s adult daughters found a bottle in his home with 100 Percocet pills, she convinced her father to see a pain management specialist and enter a confidential drug treatment program managed by Major League Baseball.  

That was in 2011, the year Francona’s marriage and his career as Red Sox manager unraveled at the same time. A team that many predicted would win yet another World Series suffered an historic collapse. Stories surfaced about players drinking beer, eating fried chicken and playing video games in the clubhouse during games. Anonymous sources pinned much of the blame on Francona, who was unceremoniously dumped by the Red Sox at the end of the season.

“Team sources said Francona… appeared distracted during the season by issues related to his troubled marriage and to his health,” reported the Boston Globe. “Team sources also expressed concern that Francona’s performance may have been affected by his use of pain medication.”

Francona felt betrayed by the team and by the insinuation that he was an addict.

“I don’t have a drug problem, that’s pretty obvious. I don’t drink that much, but I joke about it a lot. Anybody that knew me knew that I had taken more painkillers in ’04, because my knees were shot,” he said.

Francona was hired as manager by the Indians in 2012 and has guided them to four consecutive winning seasons. The Indians swept Francona’s old club – the Red Sox – to win the American League’s divisional series this month. They went on to beat the Toronto Blue Jays to win the American League pennant and now face the Chicago Cubs in the World Series.

This is Francona’s 16th year managing in the big leagues. At 57, he doesn’t talk much about his health problems – preferring instead that the attention be focused on his players. In addition to pain medication, Francona reportedly takes blood thinning medication and wears compression sleeves on his legs to improve blood circulation.  

Pain Companion: Overcoming Victimization

By Sarah Anne Shockley, Columnist

One of the most challenging things about being in chronic pain is the powerlessness we often feel because we are unable to heal our bodies and stop the constant pain.

We may feel victimized by our conditions, pharmaceuticals, invasive procedures, the impersonal nature of most institutions, and even our own bodies.

We may feel we are at the mercy of an interlocking system of agencies and organizations, one or all of which may not present a caring or compassionate face. Medical and insurance forms, appointments, tests, procedures, and legal hearings don’t take into account that we are not at our best physically, mentally and emotionally.

Yet we may blame ourselves if we are not on top of the situation or able to answer questions clearly and accurately.

Sometimes, being ill or injured feels like a crime committed by us!

Take Responsibility

Believing that others are responsible (or guilty) places them in a position of power – leaving you to become the victim. To leave that feeling of powerlessness behind, I decided that, regardless of the circumstances of my injury, I was responsible for my situation from that point forward.

I declared myself at the center of my own emotional and physical well-being and recovery. I decided not to accept an outside source as the final authority, no matter how credible. I knew that I was the one who would ultimately heal myself anyway, regardless of the method used.

That decision alone, while not bringing with it an instantaneous and miraculous cure, at least afforded a measure of relief and a feeling of having more access to different choices, rather than living entirely at the mercy of outside authorities and systems.

Notice What You Can Control

In an effort to feel less at the mercy of outside forces and more in control of my life, I started noticing what aspects of my life were still under my control.

I noticed the decisions I was already making and congratulated myself for them. I also looked at the ones I could take back -- that I had handed over to others because I didn’t know I could make them for myself or felt I didn’t have the knowledge or strength to make on my own.

Instead of following along with everything suggested by medical practitioners without question, I took authority back for myself and became part of the decisions about medications and treatments.

Choose Your Own Path

I decided that I was in charge of my own healing path. I became as knowledgeable as I could about my condition and what modalities were available, so that I could make informed decisions about my treatment.

I researched alternative therapies, natural healing, recent studies and the latest medical breakthroughs. I read blogs and stories about how other people were coping with my condition, and how some had made improvements or found ways to cure themselves.

I looked into what I could can do for myself: How improving my diet could help healing, how I could think more positively, what herbs and supplements might be beneficial, how I could reduce the amount of stress I was under, and how I could get more restful sleep.

Some of these things made only small changes in the amount of pain I was in, but doing them gave me a greater sense of direction in terms of finding ways to live with and ease my pain. It felt empowering to make my own choices, instead of putting my condition and my pain at the helm all the time.

Living with constant pain can make you feel powerless. It’s easy to feel that you have lost control over your own destiny. But thinking of yourself as a victim of pain or a victim of circumstances does very little to help you move toward whatever healing is possible for you.

Deciding to take control of whatever is in your power, taking responsibility for your own healing path, and making conscious choices toward increased well-being on a daily basis can help relieve feelings of victimization and powerlessness. And it allows us to be more fully available to new possibilities that may come our way.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

Sarah also writes for her blog, The Pain Companion.

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

New Website Launched for Kratom Comments

By Pat Anson, Editor

In a sign of their distrust of the federal government, kratom community activists have created their own website for supporters to submit comments to the U.S. Drug Enforcement Administration on the proposed classification of kratom as a controlled substance.

On October 12, the DEA formally withdrew its controversial plan to classify two of the active ingredients in kratom as a Schedule I substances, which would have made the sale and possession of the herb a felony.  Instead, the DEA said it would ask the Food and Drug Administration for a full medical and scientific evaluation of kratom, and solicit public comments on the issue at

But issues arose almost immediately with the website, where some kratom supporters said their comments weren’t accepted or the website was having technical difficulties.

Similar problems were reported when the Centers for Disease Control and Prevention took comments at on its opioid prescribing guidelines. In the end, over 4,000 comments on the guidelines were received, a record number.

This week the American Kratom Association (AKA) and the Botanical Education Alliance launched to take comments from the public that will then be automatically submitted to with an independent record of their submission. Software used by the website was created by The Soft Edge, Inc. (TSE) to avoid some of the pitfalls of is the best way of protecting the kratom community,” the AKA said in a statement. “No comments can be ‘lost’ due to glitches at That site has been down already and no one knows what was lost. ensures that comments made will be independently stored and recorded.

“There is no track record whatsoever of submissions made through TSE platforms to being rejected. To the contrary, the platform has been used to facilitate the successful submission of several hundred thousand comments.”

But not everyone is on board with a third party submitting comments to the government.

“If you use the American Kratom Association’s ‘’ you are risking your comment not being counted,” warns kratom supporter Levi Beers on his website. Beers said he was advised by the DEA to submit comments directly to and not through a third party.

“People are so confused you’ve got people submitting comments through and, which is going to hurt this process,” Beers said.

Hundreds of Comments Submitted

So far, over 800 comments have been submitted to The vast majority are from people who say kratom – which comes from the leaves of a tree in Southeast Asia – has helped them manage symptoms of chronic pain, anxiety, depression or addiction.

“Kratom has allowed me to live a highly productive, healthy and enjoyable life after my personal journey through addiction,” wrote Troy Foos, a 51-year old man who said he was addicted to alcohol and opioid pain medication.

“My life, my marriage and my relationship with my kids is a thousand times better because of the 'helping hand' of this plant. Similar to how two cups of coffee get me rolling in the morning, it has allowed me to successfully navigate my addictions and live a healthy, highly effective life at work and at home.”

“As a person with chronic pain caused by fibromyalgia, having kratom as a non-addictive option has been great,” wrote Wyatt Gaylor.  “I can now take it when I'm having a bad day without the side effects associated with opiates.”

“Kratom definitely needs to be banned,” wrote an anonymous poster who left one of the few negative comments about kratom. “My son is currently in rehab for addiction to kratom. This is a very serious product which has caused very serious health issues in someone who is only 20 years old.” 

There is usually a discrepancy at between the number of the comments received and the number posted. That’s because comments are not posted until the next business day. Others are under review by DEA because of personal information or inappropriate language. Comments will be accepted until December 1, 2016.

Researchers Unveil 3-D Image of ‘Marijuana Receptor’

By Pat Anson, Editor

An international team of researchers has released the first three-dimensional image of a human cannabinoid receptor – a discovery expected to advance research into the medical and recreational use of marijuana.

The research findings, published in the journal Cell, focused on how tetrahydrocannabinol (THC) -- the chemical in marijuana that makes people “high” -- binds to a cannabinoid receptor known as CB1, which is embedded in the surface of many nerve cells.

Cannabinoid receptors are part of a large class of receptors known as G protein-coupled receptors (GPCR), which account for about 40 percent of all prescription pharmaceuticals on the market.

"As marijuana continues to become more common in society, it is critical that we understand how it works in the human body," said Zhi-Jie Liu, a professor and deputy director of the iHuman Institute at Shanghai Tech University, who is also affiliated with the Chinese Academy of Sciences.

"We need to understand how marijuana works in our bodies; it can have both therapeutic potential and recreational use, but cannabinoids can also be very dangerous."

At the beginning of the study, researchers struggled to collect enough data to produce a crystal form of the CB1 receptor, which was needed to create the high-resolution image.

When they finally succeeded in crystalizing the receptor, they found a complex structure of pockets and channels to various regions of the receptor.

The discovery could help explain why synthetic marijuana and medicines designed to mimic cannabis have had unexpected and sometimes harmful side effects.

For example, a cannabis-based drug developed to treat obesity was found to cause depression, anxiety, and suicidal tendencies, so the medication was pulled off the market.

And synthetic marijuana, such as Spice and K2, can have severe side effects such as seizures, hallucinations, anxiety attacks and even death.  

Yekaterina Kadyshevskaya, Stevens Laboratory, USC

Yekaterina Kadyshevskaya, Stevens Laboratory, USC

"With marijuana becoming more popular with legislation in the United States, we need to understand how molecules like THC and the synthetic cannabinoids interact with the receptor, especially since we're starting to see people show up in emergency rooms when they use synthetic cannabinoids," said study co-author Raymond Stevens, a professor at the iHuman Institute and a professor of Biological Science and Chemistry at the University of Southern California.

The findings could also guide the development of cannabis-based drugs to treat pain, inflammation, obesity, fibrosis and other medical conditions.

"Researchers are fascinated by how you can make changes in THC or synthetic cannabinoids and have such different effects," says Stevens. "Now that we finally have the structure of CB1, we can start to understand how these changes to the drug structure can affect the receptor."

Fewer Pain Meds but More Overdoses in Massachusetts

By Pat Anson, Editor

Opioid prescribing fell by 15 percent for members of Blue Cross Blue Shield of Massachusetts after the insurer adopted policies that discourage the dispensing of opioid pain medication, according to a new analysis by the Centers for Disease Control and Prevention.

The CDC’s Morbidity and Mortality Weekly Report found that 21 million fewer opioid doses were dispensed to Blue Cross Blue Shield members from 2012 to 2015. But the new policies failed to slow the growing number of opioid overdose deaths in Massachusetts, which more than doubled during the same period.

The CDC said it will "take time" before overdoses start to decline.

“Reducing the level of opioid prescribing is a long term strategy to limit exposure to these drugs. Mortality outcomes would not be expected to change for several years after implementation, and impact would be complicated by the increasing supply of illicit opioids,” Courtney Lenard, a CDC spokesperson, said in an email to Pain News Network.  

"Long-term strategies like the one outlined in the report take time to make an impact and therefore no immediate impact can be expected during the first several years of program implementation. Assessing what happened before and after the policy at the mortality level is inappropriate."

Blue Cross Blue Shield (BCBS) of Massachusetts is the state’s largest insurer, with about 2.8 million members.

In 2012, the insurer adopted policies that discourage opioid prescribing by requiring doctors to develop treatment plans that consider non-opioid therapies; requiring pre-authorization for all opioid prescriptions after an initial 30 day supply; and limiting some pain patients to use of a single pharmacy.

The effect was immediate, with an average monthly decline of 14,000 prescriptions for both short and long-acting opioids.

Although cancer patients were exempt from the policies, there was a 9% decline in opioid prescriptions to BCBS members with a cancer diagnosis. The CDC attributed that to a “sentinel effect” in which doctors implement the same policies for all of their patients regardless of diagnosis.

“I think oncologists were becoming more thoughtful and maybe more vigilant about how much narcotics they were prescribing and I think that’s why we saw that decrease in cancer patients,” said Tony Dodek, MD, associate chief medical director for BCBS of Massachusetts. “We’ve only received one complaint about the program in terms of people having access to necessary pain medications.”

Like the CDC, Dodek said it may take years before the stricter prescribing policies start to have an impact on overdoses. So far the signs are not encouraging.

Opioid overdoses in Massachusetts rose from 698 deaths in 2012 to 1,659 deaths in 2015. The trend has continued in the first six months in 2016, with nearly a thousand opioid overdoses reported. Two-thirds of this year’s deaths were related to fentanyl, a synthetic opioid that is increasingly appearing on the black market. Illicit fentanyl is often combined with heroin and cocaine, or used in the manufacture of counterfeit pain medication.



“It’s not surprising to me that overdoses have not gone down because there is still a lot of drugs in circulation,” said Dodek. “What we did was slow the supply of new medication that’s in circulation. The fact is there is already way too much medication sitting in people’s medicine cabinets at home and that is what was available to start this epidemic.”

The Drug Enforcement Administration has said the U.S. is being “inundated” with counterfeit painkillers and there are anecdotal reports of some patients turning to street drugs for pain relief as opioid medication has become harder to get. But Dodek says it is recreational users – not pain patients – who are resorting to the black market.

“Any pain patient isn’t having access problems to getting opioids,” he said. “Those who may be using it for recreational purposes or for diversion probably are having a more difficult time (getting prescriptions). We still need to figure out what to do about illicit drugs, but I think decreasing the amount of prescriptions drugs will only be a good thing in the end.”

And what about the effect on pain patients as these policies are adopted? The CDC report ends with this telling statement:

“Finally, it is not known from these data how patient pain and function were affected by limiting access to opioid prescriptions.”

How Positive Thinking Helps Me Cope with Chronic Illness

By Ellen Lenox Smith

Recently, I had a column published on tips for coping with gastroparesis – a digestive disorder that interferes with the movement of food through the intestine.

Despite my research and best efforts to try all the advice I gave, I continued to have no success with elimination. My life was weekly colonics, along with home enemas on the other days.

After six months of my gut essentially being shut down, I finally went to a new doctor, to find out that the diagnosis of gastroparesis was incorrect. I was dealing instead with “motility issues” caused by Ehlers-Danlos syndrome.

Feeling frustrated and discouraged, but also determined, I decided to try one more alternative treatment to see if I could find some relief.  

I found my old DVD of the “The Secret” and forced myself to once again listen carefully to what was being described, to see if this could turn things around. I had used this process before when I first had to retire, as I was experiencing excessive stress relative to our financial situation. I was so concerned how we would survive financially without my income.

Watching the DVD, I learned to understand that energy flows where attention goes, and that life is a product of our thoughts and feelings. It seemed nuts to me at the time, but I had nothing to lose and everything to gain if the process worked.

ellen lenox smith

ellen lenox smith

I began to focus on wanting to have enough money to pay our bills. And strangely enough, within a month, that stress over money seemed to leave me and I began to trust that things would fall into place.

Today, ten years later, I have remained calm about money, which still shocks me! This was not who I was before.

Now I was back to the drawing board to see if this could turn my motility issues around. Since energy flows to what you focus and think about, you have to train yourself not to focus on what you don’t want, but on what you are grateful for andwant in life.

To give this a try, I was to wake up each morning and spend a few minutes in bed thinking about what I am grateful for and then visualize what I want in life. Since it seems harmless and I needed help, I decided to try this process again.

About three weeks ago, I started doing this visualization, remembering what it was like to feel the sensation of having to eliminate and also the process of feeling the release. I know this sounds somewhat irrational, but after six months of nothing working, I was game for anything.

Within three weeks of trying it, I began to not only feel the sensation, but actually began to have success with elimination. All seems to be “on go” unless I eat foods that I react to or I’m under stress, both of which cause the GI system to shut down.  

My system has only shut down three times in the past three weeks. Something is changing and the results are thrilling and fill me with new hope.

Focusing on the positive and pushing negative situations out of the mind is not easy. Just look at the evening news! We wait until the end of the national news for one piece called “Making a Difference” that ends the broadcast with one positive report. Why don’t we sit and watch all positive things that have happened that day?

“The Secret” states: “Everything we think and feel is creating our future. If you’re worried or in fear, then you’re bringing more of that into your life throughout the day.”

What do you have to lose to give this a try? I now no longer stress about money and have added a successful movement of my gut again after six months of no success. I love how much more positive and hopeful I am feeling by practicing this simple process. Future goals to try will be imaging a walk on sand and in my yard,. along with driving again.  

Over the past eight years, I have utilized many conventional treatment modalities. Not all have proven successful, but I feel that I owe it to myself and my family to explore any treatment which might enhance the quality of my life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

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

Half of New York Overdoses Blamed on Fentanyl

By Pat Anson, Editor

Nearly half of the overdose deaths in New York City since July have been linked to fentanyl, according to a new report that adds to the growing body of evidence that illicit fentanyl is now driving the nation’s opioid epidemic – not prescription pain medication.

In an advisory sent to healthcare providers, New York’s health department said 47 percent of the city's confirmed overdose deaths since July 1 have involved fentanyl. That compares to 16% of overdoses involving fentanyl in all of 2015. So far this year, 725 people have died from drug overdoses in New York.

“Data suggest that the increased presence of fentanyl is driving the increase in overdose fatalities,” the alert said. “While fentanyl is most commonly found in combination with heroin-involved overdose deaths, fentanyl has also been identified in cocaine, benzodiazepine, and opioid analgesic-involved overdose deaths.”

Fentanyl is a synthetic opioid 50 to 100 times more potent than morphine. Because of its potency, healthcare providers are being warned that additional doses of naloxone – which reverses the effects of an opioid overdose – may be needed when fentanyl is involved.

Fentanyl is available legally by prescription in patches and lozenges to treat more severe types of acute and chronic pain, but illicitly manufactured fentanyl has become a scourge across the U.S. and Canada, where it is often mixed with heroin and cocaine or used to make counterfeit pain medication.

Unsuspecting buyers, including some pain patients who were unable to get opioid medication legally, often have no idea the drug they’re getting from a dealer or friend could contain a lethal dose of fentanyl.

dea image of fentanyl

dea image of fentanyl

In addition to New York City, several states in the Northeast and Midwest have reported that fentanyl is now involved in about half of their overdose deaths.

The sharp increase in fentanyl-related deaths has coincided with new restrictions on the prescribing of opioid pain medication. In the past year, the Drug Enforcement Administration has issued two public safety alerts about fentanyl, but the Centers for Disease Control and Prevention has remained relatively quiet about the problem – focusing instead on opioid prescribing guidelines that were released in March of this year.  

Those guidelines have led many doctors to reduce doses or stop prescribing opioids altogether, but they have failed to make a dent in the number of Americans dying from overdoses. There have also been anecdotal reports of a rising number of suicides by patients unable to get opioid medication.

“I know five people who have committed suicide from being denied pain medication by doctors after the CDC came out with their ridiculous statements of the ‘epidemic’ of prescription opioid use,” says Nina Stephens, a Colorado woman who suffers from chronic pelvic pain. 

Doctors are so afraid of getting in the middle of this epidemic mess with the FDA that they have decided to stop prescribing opioids to their patients, even those patients who are in desperate chronic pain. We are now treating our patients worse than dogs when it comes to pain.”

Stephens says she has to drive 4 hours each month to see a doctor who is still willing to prescribe opioids. A local pain management doctor just 20 minutes away said he would take Stephens off opioids and give her epidural injections instead, which she refused.

“I am truly afraid that soon I will have to drive even farther to find a doctor who will still be willing to prescribe pain pills to me each month or I will have to start looking at the black market.  Maybe a veterinarian would be willing to start treating me?  No wonder the suicide rate is going up so dramatically!” Stephens wrote in an email to PNN.

Canada’s Fentanyl Crisis

Counterfeit fentanyl pills started appearing in British Columbia about two years ago and have since spread throughout Canada. The fentanyl crisis is so severe a two-day conference was held in Calgary this week for healthcare providers and law enforcement.  There were 153 deaths associated with fentanyl in Alberta province during the first six months of 2016.

Some attendees want Alberta to declare a public health emergency – as British Columbia did in April. But Alberta’s Minister of Justice says the current fentanyl situation doesn’t warrant such a declaration.

“None of those powers will assist us in this case but they do give the government a significant ability to violate civil liberties,” said Kathleen Ganley. “We think it’s important we use those powers that have significant impact on Albertans only where they would be helpful to us.”

On display at the conference was an illegal pill press seized by law enforcement that is capable of producing 6,000 fentanyl laced pills per hour.

“Some of the tablets we’ve been seizing in Calgary have ranged from 4.6 milligrams to 5.6 milligrams per tablet—which is very high obviously, considering a lethal dose is two milligrams,” said Calgary police Staff Sgt. Martin Schiavetta in Calgary Metro.

Researchers Discover ‘Brain Signature’ for Fibromyalgia

By Pat Anson, Editor

Researchers at the University of Colorado Boulder have discovered a “brain signature” that identifies fibromyalgia with 93 percent accuracy, a potential breakthrough in the diagnosis and treatment of a chronic pain condition that five million Americans suffer from.

Fibromyalgia is a poorly understood disorder characterized by deep tissue pain, headaches, fatigue, anxiety, depression and insomnia. The cause of fibromyalgia is unknown and there is no universally accepted way to diagnose or treat it.

The CU Boulder researchers used MRI scans to study brain activity in a group of 37 fibromyalgia patients and 35 control patients, who were exposed to a series of painful and non-painful sensations.

The researchers were able to identify three neurological patterns in the brain that correlated with the pain hypersensitivity typically experienced with fibromyalgia.



"The potential for brain measures like the ones we developed here is that they can tell us something about the particular brain abnormalities that drive an individual's suffering. That can help us both recognize fibromyalgia for what it is - a disorder of the central nervous system - and treat it more effectively," said Tor Wager, director of CU Boulder’s Cognitive and Affective Control Laboratory.

If replicated in future studies, the findings could lead to a new method to diagnosis fibromyalgia with MRI brain scans. Patients who suffer from fibromyalgia have long complained that they are not taken seriously and have to visit multiple doctors to get a diagnosis.

"The novelty of this study is that it provides potential neuroimaging-based tools that can be used with new patients to inform about the degree of certain neural pathology underlying their pain symptoms," said Marina López-Solà, a post-doctoral researcher at CU Boulder and lead author of a study published in the journal Pain. "This is a helpful first step that builds off of other important previous work and is a natural step in the evolution of our understanding of fibromyalgia as a brain disorder."

One patient advocate calls the use of MRI brain scans a breakthrough in fibromyalgia research.

"New cutting-edge neurological imaging used by CU Boulder researchers advances fibromyalgia research by light years," said Jan Chambers, founder of the National Fibromyalgia & Chronic Pain Association. "It allows scientists to see in real time what is happening in the brains of people with fibromyalgia. 

"In fibromyalgia, the misfiring and irregular engagement of different parts of the brain to process normal sensory stimuli like light, sound, pressure, temperature and odor, results in pain, flu-like sensations or other symptoms.  Research also shows that irregular activity in the peripheral nervous system may be ramping up the central nervous system (brain and spinal cord).  So the effect is like a loop of maladjustment going back and forth while the brain is trying to find a balance.  This extra brain work can be exhausting." 

The theory that fibromyalgia is a neurological disorder in the brain is not accepted by all. Other experts contend it is an autoimmune disorder or even a “symptom cluster” caused by multiple chronic pain conditions. And some doctors still refuse to accept fibromyalgia as a disease.

One company has already developed a diagnostic test for fibromyalgia – and it’s not a brain scan. EpicGenetics has a blood test that looks for protein molecules produced by white blood cells. Fibromyalgia patients have fewer of these molecules than healthy people and have weaker immune systems, according to the founder of EpicGenetics. But critics have called the blood test “junk science” that is backed up by little research.

A Pained Life: Show and Tell

By Carol Levy, Columnist

I’ve written before about Susanne Main’s Exhibiting Pain research project --- which looked at creative ways to express the chronic pain experience. I was happy to contribute a picture that conveys how quickly pain from trigeminal neuralgia can strike.

The Exhibiting Pain project recently ended, but before closing participants were asked if they had ideas for more research or collections.

My thoughts on the question turned to my own experience trying to get a diagnosis and help for my facial and eye pain.

Because of an insurance issue I had to go to a hospital clinic for over a year. Every visit was the same. I saw a medical resident, sometimes the same person, sometimes not. Regardless, the visit always followed the same script.

I have terrible pain in my face,” I would say, while pointing a finger towards my face and drawing a circle around the painful area. Because of the horrendous pain triggered by any touch, I made sure not to come in contact with the skin.

The resident would look at me. Then he would shrug his shoulders or shake his head.

“I don't know what you have,” he’d say. “Maybe it's psychological.”

Other residents were dumbfounded and would send me home with a verbal pat on the head. I literally had to cry during a phone call with one resident before I was finally prescribed pain medication.

As many times as I showed up for my appointments, at least once a month, sometimes more, I would always say the same thing: “This is where the pain is.”

My finger never varied from the circle I drew the first time they saw me, and their answer never varied: “I don't know what you have.”

One evening I finally got a diagnosis. The only problem was it came while I was on a date with one of the ophthalmology residents. We were touching. My date lifted his hand and brought it up towards the left side of my face.

I yelled out: “Don't touch me there! You’ll set off the pain.”

He looked at me with a strange expression. “Exactly where is the pain?” he asked.

I mapped out the same area for him that I had at the clinic, for him and all the other doctors I had seen.

He sat up and stared at me.

"I know what you have. You have trigeminal neuralgia.”

It was surreal. His diagnosis was horrendous and scary. And we were on a date for goodness sakes. Why now? Why not tell me that in the clinic?

I never varied in the area I indicated and described, no matter how many times and how many doctors I saw.  For some unknown reason, it was apparently ignored. I would later learn the area I showed them was the exact anatomical map of 2 parts of the trigeminal nerve. In fact, I was a textbook case.  So why did they ignore me?

That I can't answer. But Susanne Main's work has led me to a conclusion: What if doctors asked to see a drawing of where the pain is located and how it feels? Would they be so quick to dismiss it, to not hear what we are trying to tell them?

Maybe the visual is what is necessary to open their eyes. And their ears.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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

Wheat Protein Could Worsen Chronic Illness

By Pat Anson, Editor

Gluten isn’t the only reason why some people should avoid eating wheat.

German researchers have discovered a second protein in wheat that triggers inflammation and worsen symptoms of multiple sclerosis, lupus, rheumatoid arthritis and other chronic illnesses. The finding could help explain why some people who are not gluten intolerant and do not have celiac disease still benefit from going on a gluten-free diet.

Researchers say a family of proteins called amylase-trypsin inhibitors (ATIs) make up only about 4% of the protein found in wheat. But they can trigger powerful immune system reactions outside the digestive system, in the lymph nodes, kidneys, spleen and brain.

"As well as contributing to the development of bowel-related inflammatory conditions, we believe that ATIs can promote inflammation of other immune-related chronic conditions outside of the bowel,” said lead researcher, Professor Detlef Schuppan of Johannes Gutenberg University.

“The type of gut inflammation seen in non-celiac gluten sensitivity differs from that caused by celiac disease, and we do not believe that this is triggered by gluten proteins. Instead, we demonstrated that ATIs from wheat, that are also contaminating commercial gluten, activate specific types of immune cells in the gut and other tissues, thereby potentially worsening the symptoms of pre-existing inflammatory illnesses.”

Schuppan presented his findings at United European Gastroenterology Week. He said future clinical studies will explore the role that ATIs play on chronic health conditions in more detail.

"We are hoping that this research can lead us towards being able to recommend an ATI-free diet to help treat a variety of potentially serious immunological disorders," said Schuppan.

Celiac disease is a gastrointestinal inflammation caused by the ingestion of wheat, barley, rye, and other foods containing gluten. About 1-2% of the population has celiac disease, but most cases go undiagnosed and untreated.

People with non-celiac gluten sensitivity (NCGS) may also develop gastrointestinal symptoms, as well as headaches, chronic fatigue, fibromyalgia and allergies. Abdominal pain and irregular bowel movements are frequently reported with NCGS, which can make it difficult to distinguish from irritable bowel syndrome (IBS).

The symptoms typically appear after the consumption of gluten-containing food and improve rapidly on a gluten-free diet, even though gluten does not appear to cause the condition. Schuppan says the real culprit may be ATIs.

"Rather than non-celiac gluten sensitivity, which implies that gluten solitarily causes the inflammation, a more precise name for the disease should be considered," he said.

Trump and Clinton Pursue Same Policies in Pain Care

By Pat Anson, Editor

Chronic pain patients hoping for a dramatic change in federal pain care policies as a result of the presidential election are likely to be disappointed.

Both Donald Trump and Hillary Clinton favor more restrictions on opioid prescribing, as well as expanded access to addiction treatment programs, which are essentially the same policies being pursued by the Obama administration.

At a rally in New Hampshire this weekend, Trump outlined for the first time his strategy to combat the nation’s so-called opioid epidemic.

“DEA should reduce the amount of Schedule II opioids -- drugs like oxycodone, methadone and fentanyl -- that can be made and sold in the U.S. We have 5 percent of the world’s population, but use 80 percent of the prescription opioids,” Trump said in prepared remarks.

“I would also restore accountability to our Veterans Administration. Too many of our brave veterans have been prescribed these dangerous and addictive drugs by a VA that should have been paying them better attention.”

Trump said the Food and Drug Administration has been “too slow” in approving opioid pain medication with abuse deterrent formulas. And he said he would “lift the cap” on the number of patients that a doctor can treat with addiction treatment drugs.

donald trump

donald trump

But the Republican nominee seemed confused about the difference between abuse deterrent formulas and addiction treatment drugs like buprenorphine (Suboxone).

"The FDA has been far too slow to approve abuse-deterring drugs. And when the FDA has approved these medications, the rules have been far too restrictive, severely limiting the number of authorized prescribers as well as the number of patients each doctor can treat," he said.

There are no limits on doctors for prescribing abuse deterrent drugs, but there are for the buprenorphine. In August, the Obama administration nearly tripled the number of patients that a doctor can treat with buprenorphine.

Trump also seemed unaware that the DEA recently said it would reduce the production quota for many opioids by 25 percent or more.

Trump claimed the Obama administration has worsened the nation’s drug problem by commuting the sentences of drug traffickers and by releasing “tens of thousands” of drug dealers early from prison. He also pledged to stop the flow of illegal drugs into the country.

“We will close the shipping loopholes that China and others are exploiting to send dangerous drugs across our borders in the hands of our own postal service. These traffickers use loopholes in the Postal Service to mail fentanyl and other drugs to users and dealers in the U.S.” said Trump.

“When I won the New Hampshire primary, I promised the people of New Hampshire that I would stop drugs from pouring into your communities. I am now doubling-down on that promise, and can guarantee you – we will not only stop the drugs from pouring in, but we will help all of those people so seriously addicted get the assistance they need to unchain themselves.”

Like Trump, Hillary Clinton has also promised to expand access to addiction treatment, but in more detail. Her Initiative to Combat America's Deadly Epidemic of Drug and Alcohol Addiction would allocate $10 billion in block grants to states to help fund substance abuse programs.  

Clinton also wants doctors to undergo training in opioid prescribing before they are licensed to practice and to require that they consult prescription drug databases before writing prescriptions for controlled substances.

One area where Clinton differs with Trump is that she puts less emphasis on law enforcement. Saying she wants to “end the era of mass incarceration,” Clinton has called for low-level drug offenders to get treatment and not just be locked up.

“For those who commit low-level, nonviolent drug offenses, I will reorient our federal criminal justice resources away from more incarceration and toward treatment and rehabilitation. Many states are already charting this course — I will challenge the rest to do the same,” Clinton wrote in an op/ed published in the New Hampshire Union Leader.

hillary clinton

hillary clinton

In their public statements, neither Trump or Clinton have given any indication that they believe that  federal policies affecting pain care, such as the CDC’s opioid prescribing guidelines, have gone too far. If anything, they want to go further.

Clinton has endorsed a proposed tax on opioid pain medication sponsored by West Virginia Sen. Joe Manchin (D). If approved, the so-called Lifeboat Act would raise $2 billion annually to fund addiction treatment programs. The tax would be the first federal tax on a prescription drug ever levied on consumers.  

During a roundtable discussion about opioid overdoses in West Virginia, Clinton called the tax “a great idea” and said it was “one of the reasons why I am such an admirer of Sen. Manchin.”

Pain News Network has asked the Trump campaign where the Republican nominee stood on the opioid tax. We have yet to get a response.

Tips for Managing Your Meds

By Barby Ingle, Columnist

When it comes to managing medication, the more you know about your medical condition the better equipped you’ll be to understand which drugs to take, the side effects to watch for, and when to take them. It is also a great idea for your caregiver to know.

There are many times when I am not doing well and my husband will say, “You seem dizzy. Have you taken XXX yet? When was the last time you took it?”

Or he’ll say, “We are going to go out later to get groceries, so take your pill now so you won’t be sleepy when we go and you will be more comfortable.”

Having someone there to help me is great, because sometimes I feel so awful that I cannot remember to take my medication or even what I have taken. I have overdosed on different medications a few times because I forgot I had already taken a dose.

Here are some tips I’ve learned to manage my medications safely:

1)  Use a pill organizer to keep track of your medications. I have a pill box for a two week supply separated into morning and night pills.

2)  Keep medications without childproof caps away from children or lock them up, especially if you have opioid pain medications.

3)  Take your pills at the same time each day, especially when medications are time-released versions. This helps to keep the level of medication consistent in your body.

4)  Know why you are taking each medication, how best to take them (before or after eating), and any side effects that you may experience. Find out what your doctor wants you to do for each medication and verify it with your pharmacist.

5)  Be sure to never break or split time-release pills. Breaking the seal can be very dangerous as your body can receive the dose of the whole pill too quickly and it can become deadly.

6)  Carry a list of your medications and doses at all times in your purse or wallet. You should also update your pharmacy records to include all of the drugs that you take, including any over-the-counter medications. I use Walgreen's and they have a great online site that allows me to update it from home.

7)  Do not drive under the influence of medication that affects your cognitive thinking. It is also a good idea not to drive while taking medications that cause drowsiness or when you are distracted by pain.

8)  If a medication is making you sick or causing side effects that you cannot tolerate, talk to your physician about adjusting the dose or changing the medication. If side effects include trouble breathing, a rash or more severe symptoms, head to a local emergency room for immediate assistance.

9)  Read prescription labels and inserts carefully. They contain important information such as the medication’s name, dosage, prescribing doctor, and expiration dates. This can help you avoid taking a medication for too long or having adverse effects from long-term use.

10)  If you are a drinker, be sure to discuss with your provider or pharmacist if it is safe to drink with any of the prescriptions or over-the-counter medications you are taking.

11)  If you have more than one doctor prescribing medications, be sure to tell all of them what you are taking, so they can be alert to possible interactions and complications. I had to do this for myself and have not had these issues since.

12)  If you decide you no longer want to continue a medication, get your provider’s guidance before you stop taking it. Some medications can be stopped immediately, but many require you to titrate or taper off them.

13)  If you discontinue a medication, be sure to dispose of it properly and immediately. You should also dispose of medication once the expiration date has passed. The FDA has a list of disposal recommendations you can see by clicking here.

Some medications such as inhalants have hazardous material disposal requirements. Follow the specific disposal instructions on the drug label. If no instructions are given, you can crush and mix medications with coffee grounds, cat litter, or food scraps. Then seal them in a bag or a container (such as a margarine tub or jar) and discard them in the regular trash.

Many pharmacies and law enforcement agencies have “Drug Take Back” events that you can participate in. Find out more from your local pharmacist or police station.

Following these tips will keep you, your loved ones and your community safer.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

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