Fentanyl Blamed for Half of Massachusetts Overdoses

By Pat Anson, Editor

New studies in Massachusetts and Rhode Island show that the nation’s fentanyl problem may be much worse than previously thought, while the abuse of opioid pain medication may not be as bad as it is often portrayed.

The Massachusetts Department of Public Health released new data showing that over half of the opioid overdose deaths in the state in 2015 were related to fentanyl, a powerful synthetic opioid that is more potent and dangerous that heroin.

It was the first time toxicology tests were used to detect the presence of fentanyl, a method that is far more accurate than the death certificate codes that the Centers for Disease Control and Prevention uses to classify opioid-related deaths. 

“The first-time inclusion of data on fentanyl allows us to have a more honest and transparent analysis of the rising trend of opioid-related deaths that have inundated the Commonwealth in recent years,” said Secretary of Health and Human Services Marylou Sudders.

Of the 1,319 opioid overdose deaths in Massachusetts for which a blood test was available, over 57 percent had a positive result for fentanyl.

The state’s findings do not distinguish between prescription fentanyl that is used to treat more severe forms of chronic pain and illicit fentanyl sold by drug dealers. But it seems likely the vast majority of deaths involve the latter.

illicit fentanyl powder

Massachusetts also released new data from its prescription drug monitoring program for the first quarter of 2016, showing that relativity few pain patients prescribed a Schedule II opioid medication had signs of abusing the drugs. Schedule II opioids include hydrocodone products such as Vicodin and Lortab.

Of the nearly 350,000 patients who had an opioid prescription, the state identified only 484 people (or 0.0014%) as “individuals with activity of concern.” The method used to identify possible abuse was someone receiving Schedule II opioid prescriptions from 4 or more providers and having them filled at 4 or more pharmacies during a three month period.   

Rhode Island Overdoses

Rhode Island this week also released a report showing a "significant increase" in fentanyl-related overdoses. Blood tests detected fentanyl in about 60 percent of the state's overdose deaths in the last two and a half months. There have been 28 fentanyl-related overdoses in Rhode Island so far this year.

“People are injecting, swallowing, and snorting this drug without realizing that they are often breathing their last breaths. Unfortunately, fentanyl kills, and it kills quickly,” said Nicole Alexander-Scott, MD, Director of the Rhode Island Department of Health.

Deaths linked to prescription opioids have been in decline in Rhode island for several years. The prescribing of Schedule II and Schedule III drugs in the state has fallen by over a third since 2011.

"The shifts in prescription and illicit drug overdose deaths also began roughly when more focused efforts were undertaken nationally to reduce the supply of prescription drugs," the health department said in a statement.

source: rhode island department of health

‘Alarming’ Rise in Fentanyl Overdoses

In recent years Rhode Island, Massachusetts and other eastern states have seen a surge in the illicit fentanyl drug trade. The white powdered drug is usually mixed with heroin or cocaine to boost their potency, but in recent months counterfeit pain medication made with fentanyl has appeared on both coasts. The “death pills” are blamed for at least 14 deaths in California and 9 in Florida.

COUNTERFEIT NORCO PILLS

“The counterfeit pills are a newer thing that is going on and that is popping up in different places. It’s certainly something we’re keeping an eye on,” said Erin Artigiani, deputy director of the Center for Substance Abuse Research (CESAR) at the University of Maryland.

CESAR tracks emerging trends in illegal drug use through a nationwide network of more than 1,500 researchers and volunteers.

“It’s very alarming. It’s something we’re very concerned about. And it’s something that local researchers and other members of the network are worried about as well,” Artigiani said.

The appearance of fake pain medication  came just as the CDC finalized guidelines that discourage primary care physicians from prescribing opioids for chronic pain. Artigiani stopped short of saying there’s a connection, but admits some pain patients may be seeking opioids on the streets.

“There are people that are looking for other sources or maybe got cutoff by their doctor or maybe their doctor had second thoughts about prescribing pain medications for one reason or another,” said Artigiani. “The people making and selling these illegal drugs are meeting market demand. So if there’s an increase in people looking for pills, then they’re going to make something to sell to those people.”

‘Biased’ CDC Reports

Pain News Network asked to interview someone at CDC about the Massachusetts fentanyl deaths and was told no one would be available.

“We aren’t able to provide comment on non-CDC research,” a spokesperson said in an email. “At CDC we don’t publish state drug overdose death rates for Rx opioids (or for any specific drug type) due to variability in states reporting drugs involved with deaths.”

While CDC may not consider the state data all that reliable, it has not hesitated to use reports from local medical examiners and death certificates in its reports on opioid overdose deaths.

The agency’s most recent report on 2014 overdoses said the U.S. was experiencing an “epidemic of drug overdose” that it blamed largely on prescription opioids.

“Natural and semisynthetic opioids, which include the most commonly prescribed opioid pain relievers, oxycodone and hydrocodone, continue to be involved in more overdose deaths than any other opioid type,” the report states.

Only briefly does the report acknowledge the “emerging and troubling” number of deaths related to illicit fentanyl. Like Massachusetts, CDC cannot distinguish between illicit fentanyl and prescription fentanyl, an important point because all fentanyl related overdoses are classified by the agency as prescription opioid deaths.

The CDC also admits some opioid-related deaths may be counted twice in its reports and some heroin-related deaths may have been misclassified as prescription opioid overdoses.

“We already know that the CDC's info is biased. Not because they are bad people, but because of the way that data is reported to them. Garbage in, garbage out,” says Terri Lewis, PhD, a rehabilitation specialist, medical researcher and patient advocate.

“There is so much variability in the collection of data at the state level, along with the fact that data collection and reporting is voluntary, not mandatory, that one simply cannot rely on the data set. Of course they won't tell you that.” 

The CDC uses data on death certificates known as International Classification of Disease (ICD) codes, which do not determine the cause of death, only the conditions that exist at the time of death. Someone could die from lung cancer, for example, but because they were on opioids to relieve cancer pain, an ICD code box for opioids may be checked by a doctor or coroner. Autopsies and toxicology tests are not usually conducted to verify ICD coding.

“The largest part of the problem of reported death certificates is that of variability – local jurisdictions have wide variation in the preparation of individuals who complete these reports, and few are actually physicians or medical examiners. Often local coroners are appointed or elected,” said Lewis. “Until every state is doing exactly the same thing, we have muddy statistics. 

“Massachusetts has enacted one of the most sweeping changes to their reporting systems in the country – for that they are to be commended.  Distinguishing drugs by the manner of their death is important information for policy managers.” 

Until other states and CDC follow Massachusetts’ lead, we may never know the extent of the fentanyl problem. The CDC’s reliance on ICD codes not only distorts the true nature of the nation’s drug problem, but can lead to the misallocation of resources aimed at combating it.. 

The Obama administration recently asked Congress for an additional $1.1 billion to fight opioid abuse. Most of the money is earmarked for addiction treatment for prescription opioids, not for getting fentanyl off the streets.    

Talking Turkey: How Food Plays a Role in Pain

By Pat Anson, Editor

There’s a nugget of truth to the old saying, “You are what you eat.” And no, we don’t mean chicken nuggets. We’re talking turkey.

Researchers at Brigham and Women's Hospital in Boston say changes in diet and gut bacteria appear to influence the activity of brain cells involved in controlling inflammation and neurodegeneration. They’ve published their study in the journal Nature Medicine

"For the first time, we've been able to identify that food has some sort of remote control over central nervous system inflammation," said corresponding author Francisco Quintana, PhD, an investigator in the Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital.

"What we eat influences the ability of bacteria in our gut to produce small molecules, some of which are capable of traveling all the way to the brain. This opens up an area that's largely been unknown until now: how the gut controls brain inflammation."

While studying laboratory mice, Quintana and his colleagues found that gut bacteria produce molecules that influence astrocytes -- star-shaped cells that reside in the brain and spinal cord.

The molecules, which are derived from tryptophan (an amino acid found in turkey and other foods), act as fuel that helps the astrocytes limit brain inflammation.

In blood samples from patients with multiple sclerosis (MS) – a disease that attacks the body’s central nervous system -- the researchers found lower levels of these tryptophan-derived molecules.

"Deficits in the gut flora, deficits in the diet or deficits in the ability to uptake these products from the gut flora or transport them from the gut -- any of these may lead to deficits that contribute to disease progression," said Quintana.

MS is a chronic and incurable disease that causes numbness in the limbs, difficulty walking, paralysis, loss of vision, fatigue and pain.

In addition to turkey, tryptophan is found in other high-protein foods such as chicken, beef, nuts and cheese. Its a myth that eating lots of turkey will put you to sleep, according to the American Nutrition Association. But tryptophan does help produce serotonin, a neurotransmitter that regulates mood and mental activity,

Scientists are just beginning to recognize that food and gut bacteria play a role in multiple sclerosis and other chronic pain conditions.

Researchers at New York University’s Langone Medical Center recently found that some intestinal parasites and bacteria play a beneficial role in helping to balance the immune system, and reduce rates of inflammatory bowel diseases (IBD) such as Crohn’s disease and ulcerative colitis.

Sanitary practices have sharply reduced intestinal worm infections in developed nations, which now have some of the highest rates of Crohn’s and colitis. Scientists believe the worms help produce a certain type of bacteria that helps control inflammation. This “hygiene hypothesis” may also apply to MS, rheumatoid arthritis, type 1 diabetes, and other autoimmune diseases.

Seeing Both Sides of the Opioid Debate

By Crystal Lindell, Columnist

I have suddenly found myself on both sides of the opioid issue.

I’m a chronic pain patient who is among the lucky few to have gotten better, or at least mostly better. And now, I’m so “lucky” that I get to take myself off opioids. It’s been hell.

I had this idea in my head that it would be like in the movies — 72 hours of feeling like death and then I would go on with my life. But it turns out even after your physical body adjusts to life without the drugs, your brain aches for them and begs you to take them.

I have it on good authority — a psychiatrist at a university hospital who specializes in this sort of thing — that I was never classically addicted to the morphine and hydrocodone that I took on a daily basis for my intercostal neuralgia. I never took more than the prescribed dose. I never took them to get that “high” that can come from the drugs. I never bought any off the streets.

I took them for pain. As prescribed. And I passed every stupid urine test they ever gave me. If they gave out grades for taking opioids correctly, I’m not saying I would definitely have an A+, I’m just saying I probably would. 

But when you’re on morphine 24 hours a day/ seven days a week for three years straight, your brain doesn’t much care why or how you took them, it just wants to know why the heck you stopped.

And so even after the initial diarrhea and the sweating and the body aches subsided, my brain was left in shambles. And I was hit with horrific, lingering crippling anxiety and insomnia.

It turns out there’s this thing called post-acute withdrawal syndrome, or PAWS. And first it should be noted that they really didn’t take things typically associated with puppies and use them to name ugly, terrible withdrawal-related issues. But whatever.

Anyway, as you go off certain drugs, like opioids, “Post-acute withdrawal occurs because your brain chemistry is gradually returning to normal. As your brain improves the levels of your brain chemicals fluctuate as they approach the new equilibrium causing post-acute withdrawal symptoms,” according to an article on Addictions and Recovery.org.

“Most people experience some post-acute withdrawal symptoms. Whereas in the acute stage of withdrawal every person is different, in post-acute withdrawal most people have the same symptoms.”

And the symptoms can last for two years.

Here’s is a list of symptoms from that article:

• Mood swings
• Anxiety
• Irritability
• Tiredness
• Variable energy
• Low enthusiasm
• Variable concentration
• Disturbed sleep

I have all of them, if you were wondering.

The anxiety and insomnia are a special kind of hell, because they don’t even let you escape with sleep for a few hours a day. You’re just awake, all the time, wondering if the world is actually going to end right then.

And you know in your mind that the anxiety isn’t logical. You know that just because the guy you’re seeing has read your text message but he hasn’t immediately responded to it doesn’t mean he’s met someone else and gotten married to her in the last seven minutes.

But anxiety doesn’t give an eff about logic. So your heart rate ramps up and you feel sick to your stomach and you convince that if he would just TEXT YOU BACK it would all be fine. And then he does, but it’s still not fine. Because it’s never fine.

Possibly most depressingly of all, I’m struggling to write. The anxiety convinces me that I have nothing important to say and nobody would want to read it anyway, and that anything I type has probably already been said better by someone else. It paralyzes me, and takes away the one thing in life I have always been able to count on. And getting this very column out has been an exercise in sheer will.

So yeah, it’s been awful. And most of the doctors I’ve been working with truly believe that since the drugs are technically out of my system and I wasn’t an “addict,” that I should be super awesome and totally good to go. Except I’m the completely opposite of that, and I’m really struggling with all this.

The worst part might be that dealing with withdrawal has so many ties to morality in our culture, so every time I have an anxiety attack and I reach for half a hydrocodone to calm me down, I feel like I failed at life. I feel like I went from A+ to F-.

The thing is, even with all this hell, I still don’t regret going on morphine three years ago. Back then I was in so much pain that I was genuinely planning ways to kill myself and the opioids were the only thing that helped me. They not only saved my life, they helped me keep my job and stay somewhat social.

But now, as I try to get my brain back to normal, I’m struggling. Like I mentioned, I’m working with a psychiatrist and psychologist and I have also recently made the decision to go on anxiety medication and try sleeping pills.

I still wake up in a state of panic more days than not though. I feel like something horrible is going to happen at any moment, and feel lucky if I get five hours of sleep in one night. So it’s not like I’ve found a magic cure.

The bottom line is it’s time we all admit how incredibly complicated opioids really are.

On one side, people in pain deserve access to them. Quality of life is important and nobody should have to suffer because of mass hysteria about hydrocodone. 

But we can’t ignore the fact that no matter how responsibly we take these drugs, our brains get addicted to them over time. And stopping them isn’t as easy as a 72-hour withdrawal weekend.

Doctors need to know these things, and then they need to relay them to their patients. And only when we have an honest conversation about the benefits AND the risks associated with these drugs can we begin to move forward in a productive way.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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

Untreated Pain Raises Risk of Drug & Alcohol Abuse

By Pat Anson, Editor

Nearly nine out of ten people who abuse drugs or alcohol have chronic pain and most are using the substances for pain relief, according to the findings of a new study at Boston University School of Medicine.

The study seems likely to stir further debate about the nation’s opioid abuse problem and whether taking patients off pain medication or lowering their doses will only lead to more substance abuse.

Researchers surveyed nearly 600 primary care patients who screened positive for illegal drug use, misuse of prescription drugs or heavy alcohol use and found that 87 percent of them had chronic pain. About half rated their pain as severe.

Over half (51%) of the patients who admitted using marijuana, cocaine, heroin or other illegal drugs said they did it to treat pain.

And about eight out of ten who abused prescription pain medication (81%) or alcohol (79%) said they did it to manage pain.

"While the association between chronic pain and drug addiction has been observed in prior studies, this study goes one step further to quantify how many of these patients are using these substances specifically to treat chronic pain,” said lead author Daniel Alford, MD, an associate professor of medicine at Boston University School of Medicine.

“In this study, it was common for patients to attribute their substance use to treating symptoms of pain. Over half of the cohort using illicit drugs, two thirds misusing prescription drugs without a prescription, and one-third using their prescription in greater amounts than prescribed, reported doing so to treat pain. Among those with any recent heavy alcohol use, over one-third drank to treat their pain, compared to over three-quarters of those who met the criteria for current high-risk alcohol use.”

Alford said it was important for primary care doctors and addiction counselors to recognize the link between pain and substance abuse, because counseling efforts are likely to fail if a patient’s pain is not addressed.

“If drugs are being used to self-medicate pain, patients may be reluctant to decrease, stop or remain abstinent if their pain symptoms are not adequately managed,” Alford wrote.

“Addressing pain symptoms is complicated for the most experienced physician and is outside the skill set of most allied health staff performing brief intervention counseling. Brief interventions focusing solely on the harmful effects of an illicit or misused drug may be ignored or disregarded if the patient perceives the drug as necessary to treat a symptom.”

The study is published in the Journal of General Internal Medicine.

Making Everyday Life Less Painful

By Barby Ingle, Columnist

Every day is a challenge to remain independent when living with chronic pain. Normal activities such as walking, taking the stairs, squatting, sitting for long periods, and getting in and out of vehicles can be quite challenging and painful.

To get more out of life, I had to learn how to minimize disruptions in my daily routine and how to be a time and energy saver. That meant making some changes around the house.

Every pain patient and their family should assess their surroundings, perhaps with the help of professionals, and prioritize the modifications needed. This can help the patient maintain their independence and function.

Some of the lifestyle modifications you may wish to consider include: 

 Clothing

•  Flat shoes instead of heels for patients with lower extremity issues
•  Slip-on shoes
•  Velcro or zipper closures for shirts or sweaters
•  Velcro or zippers for shoes instead of shoelaces

 Bathroom

•  Elevated toilet seat
•  Grab bars in the bathtub, shower, and next to the toilet
•  Long-handled comb or brush so the patient does not have to raise his or her arm high
• Tub or shower bench 

Bedroom

• Blanket support frame so that blankets or sheets do not rest directly on the feet of a patient
• Nightlights in the bedroom and other rooms where the patient may walk if they awaken during the night

 Automobile

•  Car doors that are easy to open and close
•  Handicapped parking stickers
• Modified controls to facilitate driving
•  Seat positions that are easy to manipulate

Kitchen

• Easy grab handles for cabinets
• Large knobs on appliances requiring manipulation (stove, dishwasher, washing machine)
• Lightweight appliances (vacuum cleaner)
• Lightweight dishes and pots
•  Lightweight flatware with long handles
• Long handled cleaning appliances (brooms, dustpans, sponges)
• Long-handled "grabbers" for removing items on high shelves or picking up items from the floor
• Sliding shelves or turntables on kitchen shelves so the patient does not have to reach into cabinets to access items in the back 

Miscellaneous

• A note from your doctor recommending special accommodations, such as an aisle seat in airplanes
• Electric wheelchair to avoid upper body strain or injury
• Medical support professionals or accountants to budget medications, special appliances, home-nursing care, and other medical-related supplies and expenses
•  Nursing or home health care
• Use of wheelchairs in airports, train stations, or malls
• Voice activated lights, appliances, or computer
• Wheelchair-access modifications at home

Undoubtedly, there has been progress made in recent years by healthcare professionals and patients towards understanding and properly managing pain. Unfortunately, pain still poses a problem for patients who are under-diagnosed, over-diagnosed or misdiagnosed.

Controlling the pain you are in is essential to quality of life. Knowing the characteristics of pain and why it is happening give you an advantage in dealing and controlling aspects of pain. Taking control of your life and being responsible for yourself will assist you in lowering your pain.

I see these life changes as a way to improve my daily living -- not as defeats. Using tools in life help those with disabilities from pain have a better life. If a tool can help us accomplish more and increase independence, we should not be ashamed of using it.

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.

How Long Does OxyContin Last?

By Pat Anson, Editor

The pain relieving effects of OxyContin, Purdue Pharma’s best-selling opioid painkiller, often wear off early and the company has been aware of the problem for many years, according to a lengthy investigation by the Los Angeles Times.

The Times investigation of OxyContin, which was based on court records and thousands of “confidential” Purdue documents, found that a single dose of the extended release painkiller often doesn’t last for the intended 12 hours and that it performs more like “an 8-hour drug.” That makes some patients take extra doses or stronger ones, raising the risk of abuse and addiction.

“Such results shouldn’t come as a surprise. After all, the FDA doesn’t require drugs to work as promised for all patients. What was eye-popping about The Times’ findings was how Purdue responded when doctors told them their patients weren’t getting the full 12 hours of relief promised,” The Times said in an editorial.

“Instead of recommending that such patients take OxyContin more than twice per day — which might make it less appealing than cheaper generic opioids with short durations — Purdue’s representatives told doctors to stick to the 12-hour regimen and prescribe higher-strength pills.”

Purdue quickly issued a statement rejecting The Times’ story, saying it was “short on facts.”

“In an attempt to resurrect a long-discredited theory, the paper ignores the clinical and regulatory data that directly contradicts their story,” Purdue said. “Over the course of two years, Purdue Pharma provided the LAT (Los Angeles Times) with more than a dozen hours of briefings and discussions regarding the clinical evidence supporting OxyContin’s 12-hour dosing and the regulatory requirement that we promote the product as such. Unfortunately, the paper disregarded this information, instead publishing a story that’s long on anecdote and short on facts.”

Purdue said the FDA rejected claims over a decade ago that OxyContin was misbranded as a “twice-a-day” drug and was being prescribed inappropriately.

The Times published its own rebuttal to Purdue’s statement online, which you can see by clicking here.

Pain News Network asked readers what they thought about OxyContin’s pain relieving qualities and got a mixed response.

“Worked like a dream for me, but too expensive,” wrote one patient on our Facebook page, who said she switched to generic oxycodone.

“Doesn't start working for 3 hrs. Seems like it ends at the 9th hour. Not really happy about that, but what can you do?” wrote another patient, who said she had too many side-effects from other pain medications.

“It only lasted 5-6 hours for me. Stopped taking it years ago because it was ineffective,” said another pain patient.

Since its introduction in 1996, OxyContin has reportedly generated over $31 billion in revenue for Purdue, but it also created a tainted legacy that the company is still trying to shed two decades later. Many believe OxyContin helped spark the so-called opioid “epidemic” because its sales reps initially told doctors the drug had a low risk of abuse and addiction.

In 2007, a class action lawsuit against Purdue for deceptive marketing ended with several company executives pleading guilty to a felony count of misbranding OxyContin. The company and its executives were fined $634 million.

In 2010, Purdue introduced an abuse-deterrent formula of OxyContin that makes it harder for drug abusers to crush or liquefy the tablet for snorting or injecting. Some patients have complained the new formulation isn't as effective or causes gastrointestinal problems.

Iowa Pain Patient Goes on Hunger Strike

By Pat Anson, Editor

An Iowa man who was released as a patient by his doctor last month has gone on a hunger strike, vowing to never eat again until “pain patients are treated better.”

“He fired me. Basically they don’t want chronic pain patients anymore,” says Ryan Lankford of Des Moines. “Between my experiences and reading stories online from so many people being treated the same way I am, I just thought I needed to make a statement and do something, if nothing else to raise awareness.

“I know it’s kind of pie in the sky. I just think at this point I don’t think I have anything to lose.”

The 40-year old Lankford suffers chronic pain in his right arm, stemming from an attack of flesh eating bacteria in 2009. Surgeons removed infected tissue and muscle to save Lankford’s arm, but the remaining nerves are encased in scar tissue and still cause neuropathic pain.

Lankford said his doctor at UnityPoint Health told him he was being discharged for making “inappropriate remarks.”  

“They wouldn’t say what the remarks were or to whom, but it was pretty clear they were tired of taking care of me, because at the same time I had told my doctor that the pain meds weren’t working as well anymore,” Lankford said.

“He said don’t try any of the other clinics because we have your records and you’re not going to be taken by any of our affiliates either.”

A call to UnityPoint Health for comment was not returned.

Since being discharged, Lankford says he has been taking “dangerous amounts of Tylenol” because he is no longer able to get tramadol, a weaker opioid pain medication that helped take the edge off his chronic pain.

“I’m unable to find anyone in Iowa to even prescribe me tramadol,” Lankford said. “If they hear you’re a pain patient and you’re trying to find a primary care provider they hang up the phone on you. They just plain don’t want you.”

Lankford says it’s been difficult to find doctors willing to treat his pain ever since a Des Moines pain management specialist was indicted in 2012 on seven counts of involuntary manslaughter for overprescribing opioids. Dr. Daniel Baldi was later found not guilty by a jury, but the case had a chilling effect on opioid prescribers in Iowa and around the country.

In recent months, the number of patients being dropped by doctors or weaned off opioids appears to have increased, possibly because of recent guidelines released by the CDC, which discourage opioid prescribing for chronic pain. Those guidelines are voluntary and only meant for primary care physicians, but many doctors appear to be adopting them, even pain management specialists.

Two pain clinics in Tennessee recently said they would stop prescribing opioids to chronic pain patients because of "changing regulations."

"I was told yesterday my pain doctor would no longer give me my short acting opioids," a Michigan pain patient told us. "He is also unsure if I'll be able to continue my long acting opioid one, which I've been on for around six years. This after telling me I have been a model patient. He used the recent death of Prince as a reason."

Hunger Strike Began Thursday

Lankford has not had any food since Thursday afternoon and is only taking water. He’s created a Facebook page called “Ryan’s Hunger Strike for Chronic Pain” where people can track his progress.

“I'm fully aware of what I'm doing, and what the consequences could be. It's time for action, since the powers that be won't heed our words. Once again, NOT a SUICIDE THREAT. This is legitimate political protest, and anyone who tries to forcibly stop me will be subject to legal action,” Lankford posted on Facebook.

Lankford hopes his hunger strike will draw attention not only to his own plight, but those of countless pain patients around the country who are in similar situations.

“We’ve been writing letters, talking online and making phone calls for ages and it hasn’t gotten us anywhere. Maybe something a little more drastic is in order,” he said.

Chronic Pain Patients Discovering Alternative to Opioids

By Pat Anson, Editor

It comes with clever names like KChill, Liquid K, Green Sumatra and Green Joy.

An advocacy organization calls it “a natural botanical that’s improving health and wellness from coast to coast.”

The Food and Drug Administration calls it a “narcotic” that can cause aggression, hallucinations, delusions, and tremors.

What are they talking about and why such radically different views?

Kratom is an herbal medicine made from the leaves of the Mitragyna speciose tree that grows in southeast Asia. People in that part of the world have used kratom for centuries as a natural remedy to boost energy, relieve stress and treat addiction. In the United States, kratom is increasingly being used as a pain reliever – a “safer” option than opioid pain medication.

“For people with chronic pain who want complementary therapy or want to avoid the organ damage mainstream medications can cause, it's a great option,” said Suze Blood, a 43-year old Maine woman who suffers from rheumatoid arthritis, degenerative disc disease and fibromyalgia.

On the advice of a friend, Blood started using kratom three years ago as an alternative to opioid pain medication, which not only didn’t help her pain, but made her tired and depressed.

“My friend brought me some powdered kratom to try, and he mentioned how beneficial it had been for him and his brother in managing alcohol dependence. I also learned it helps with opioid withdrawals. A smaller amount will offer more energetic response, and larger (doses) more sedative qualities and lasts for hours,” said Blood.

Traditionally, kratom leaves were simply ground up to make tea or sometimes even smoked, but the leaves are now being used commercially to make a wide variety of tinctures, ointments, capsules and energy drinks.  Like marijuana, different strains of kratom do different things, and the internet is awash with testimonials about their benefits.

Red vein kratom helps people relax and has “an excellent ability to reduce pain,” according to the Kratom Trading Company, while white vein Kratom is used as a stimulant “to promote alertness, mental vigilance and wakefulness,” according to Kratom Online.  

Kratom is not classified as a controlled substance by the Drug Enforcement Administration, but is considered a dietary supplement regulated by the FDA. Supplements in the U.S. are held to far less regulatory standards than medications, but that hasn’t stopped a handful of states from making kratom illegal or the federal government from trying to get it off the market.

In January, FDA agents in Illinois confiscated nearly 90,000 bottles of a dietary supplement made with kratom called RelaKzpro, using a provision in the law that allows the agency to detain a supplement if it believes the product is adulterated or misbranded.  

Even though kratom has been used for hundreds of years, the FDA considers it a "new dietary supplement” for which there is inadequate information about its safety.

The FDA even issued an import alert last year that allows the agency to seize kratom supplements without even physically examining them.

These heavy-handed tactics haven’t stopped kratom products from becoming widely available online without a prescription. They are also sold in some health and convenience stores – where they are often discreetly kept hidden behind the counter.

Few studies have been done on the efficacy or safety of kratom. The leaves contain mitragynine and 7-hydroxymitragynine, alkaline compounds that are believed to reduce pain by activating natural opioid receptors in the brain. Researchers have trouble explaining exactly how kratom works without comparing it to other drugs, most of them illegal.

“Mitragyna speciose has a psychostimulant effect like coca and a depressive effect like opium and cannabis, which seem to be contradictory. It is also reported that it is weaker than morphine, has a milder withdrawal syndrome compared to opioids, and is less harmful than cocaine,” is how one study explained it.

An increasing number of pain patients – unable to get opioids or tired of their side-effects – are trying kratom.

“I used to need 1-3 Percocet a day, and now i take ZERO and feel better and have a clear mind,” is how one of our readers put it.

Others have learned kratom is not only useful for pain relief, but reduces their cravings for drugs and alcohol.

“People are so scared of the opioid epidemic right now, which I completely understand, I’m a recovering opioid addict myself,” says Susan Ash, who was diagnosed with late-stage Lyme disease in 2010. She took opioid pain medication for several years, wound up going to rehab, and now takes kratom capsules for pain relief.

“It does activate these opiate receptors, so it is very effective on pain,” says Ash, who founded the American Kratom Association. “The beauty of this plant is that it’s not something someone like me, who struggles with opioid addiction, craves. It’s not something that I take when I don’t need it. It’s not something that ever in my life made me feel impaired. And I’ve been taking this for several years.”

Ash says most members of her association use kratom for pain, depression or anxiety.

“Our numbers increased a lot when hydrocodone scheduling went into place. We got a lot of older women who sought us out, whose doctors cut them off,” said Ash, referring to the DEA’s rescheduling of hydrocodone in October 2014, which made the painkiller harder to obtain. She says the CDC’s new opioid prescribing guidelines are having a similar effect.

“As those restrictions are put in place and more doctors are scared and unwilling to prescribe opioids, the more people we get. There’s definitely a direct correlation,” Ash told Pain News Network.

Kratom is illegal in Vermont, Indiana, Tennessee, Arkansas and Wisconsin. Several other states are weighing similar legislation, including New York.

If past experience is any indicator, outlawing kratom is a whole lot easier than actually controlling it.

Thailand criminalized kratom in 1943 when its popularity interfered with the opium trade, which was then a major source of revenue for the Thai government. Over 70 years later, kratom use is still rampant in much of the country.  

Researchers Say NSAIDs Cause Heart Damage

By Pat Anson, Editor

Researchers have known for many years that non-steroidal anti-inflammatory drugs (NSAIDs) increase the risk of heart attack and stroke. Now they may finally be learning why the pain relievers can be harmful.

In experiments on heart cells from rats and mice, scientists at the University of California, Davis, found that NSAIDs reduced the activity of cardiac cells at pharmacological levels found in humans. Their study was recently published in the Journal of Molecular and Cellular Cardiology.

“We knew these non-steroidal anti-inflammatories had negative side effects for heart disease and stroke risk, “ said lead author Aldrin Gomes, a UC Davis associate professor of Neurobiology, Physiology and Behavior. “But now we have an idea of some of the mechanisms behind it.”

NSAIDs are widely used to treat everything from fever and headache to low back pain and arthritis. They are found in so many different products -- such as ibuprofen, Advil and Motrin -- that many consumers may not be aware how often they use NSAIDs. 

Several studies have found that NSAIDs increase the risk of cardiovascular disease and other health problems, but the exact cause has been unclear.

The UC Davis researchers compared naproxen, considered the safest over-the-counter NSAID, with a more potent anti-inflammatory, the prescription drug meclofenamate sodium (MS).

They found that MS increased reactive oxygen species, impaired mitochondrial function, decreased proteasome function, and increased cardiac cell death. Naproxen did not affect proteasome function or cause heart cells to die, but it did impair mitochondrial function and increase reactive oxygen species produced in cardiac cells.

“We were surprised to see that many of the NSAIDs we tested were causing the cardiac cell to die when used for prolonged periods,” said Gomes. “Some people are taking these drugs too often, and this is a problem. These drugs are abused.”

For moderate pain, Gomes suggests rubbing an anti-inflammatory topically onto the pained area, which would not expose the entire body to the drug. Taking an antioxidant like vitamin C before ingesting a NSAID may also reduce cardiac cell death.

Last year the U.S. Food and Drug Administration ordered warning labels for all NSAIDs to be strengthened to indicate they increase the risk of a fatal heart attack or stroke. The agency said studies have shown the risk of serious side effects can occur in the first few weeks of using NSAIDs and could increase the longer people use the drugs. The revised warning does not apply to aspirin.

The FDA said people who have a history of heart disease, particularly those who recently had a heart attack or cardiac bypass surgery, are at the greatest risk. But the risk is also present for people who don't have heart problems.

“Everyone may be at risk – even people without an underlying risk for cardiovascular disease,” said Judy Racoosin, MD, deputy director of FDA’s Division of Anesthesia, Analgesia, and Addiction Products.

In a major study published recently in the European Heart Journal, a number of leading heart specialists warned that there is no "solid evidence" that NSAIDs are safe.

"When doctors issue prescriptions for NSAIDs, they must in each individual case carry out a thorough assessment of the risk of heart complications and bleeding. NSAIDs should only be sold over the counter when it comes with an adequate warning about the associated cardiovascular risks. In general, NSAIDs are not be used in patients who have or are at high-risk of cardiovascular diseases," said co-author Christian Torp-Pedersen, a professor in cardiology at Aalborg University in Denmark.

Prince Sought Addiction Treatment Before Death

By Pat Anson, Editor

The late pop icon Prince was planning to meet with an addiction treatment doctor in the hours before he died in a last ditch effort to kick an addiction to opioid painkillers, according to the Minneapolis Star Tribune.

Howard Kornfeld, MD, an opioid addiction specialist in California, was called by Prince representatives the night of April 20 because Prince “was dealing with a grave medical emergency,” according to William Mauzy, a prominent Minneapolis attorney working with the Kornfeld family.

Prince’s body was found the next morning in an elevator at his Minneapolis home. An autopsy has been performed and the body cremated, but the official cause of death has not yet been released. Foul play or suicide are not suspected.

Kornfeld, who runs Recovery Without Walls, an upscale addiction treatment center in Mill Valley, California, is considered a pioneer in the use of buprenorphine to treat both addiction and chronic pain. The medication has long been sold under the brand name Suboxone, but is usually prescribed just to treat addiction.

Kornfeld was unable to meet with Prince immediately, but planned to fly to Minneapolis for “a lifesaving mission” on April 22. 

“The plan was to quickly evaluate his health and devise a treatment plan,” Mauzy told the Star Tribune, which said several other sources corroborated Mauzy’s account.

Kornfeld’s son Andrew took a red-eye flight to Minneapolis on the morning of April 21 to lay the groundwork for Prince’s treatment program with his father. He was one of three people at Prince’s Paisley Park compound when the entertainer's body was found.

Mauzy said Andrew Kornfeld was the one who called 911 because the others “were in too much shock.” Kornfeld did not know the address and could only tell the dispatcher, “We’re at Prince’s house.”

Paramedics arrived within five minutes but were unable to revive the 57-year old Prince.

Sources told the Star Tribune that painkillers were found at the scene and have become the focus of the investigation.  Investigators are trying to determine where Prince got the pills and who prescribed them.

Andrew Kornfeld reportedly had a small amount of buprenorphine to give to Prince, but it was never administered, according to Mauzy.

The Star Tribune story appears to add credence to reports in TMZ and other tabloids that Prince suffered from chronic hip pain and was addicted to opioid pain medication. Just days before his death, TMZ said Prince’s plane made an emergency landing in Moline, Illinois, where he was briefly hospitalized for an overdose of Percocet. He left against medical advice and flew back to Minneapolis a few hours later.

Stop Attacking Chronic Pain Patients

By Jaymie Reed, Guest Columnist

Last week I had one of the most horrifying experiences ever. I was called and told to be in my new pain doctor’s office within 4 hours for a pill count.

You see, my own body is attacking itself, eating away the covering from the peripheral nerves in my arms and legs. I have Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and it is very painful. I need opioid pain medication to treat that pain.

It was humiliating to sit in the doctor’s office waiting for my pills to be counted and my urine screened for the second time since I became a patient there. I felt my blood pressure rising and asked the nurse what it was. I was told it was 193/108.

Shakily, I asked, “What did I do wrong? Why did I have to come in here?”

The answer: “The DEA is breathing down our necks, so we have to do this!”

To myself I was thinking, “Why do I have to trade my dignity for healthcare so I don’t have to live in pain? Why are they making me feel worse and adding to my stress?” 

What ensued that day has prompted me to try and turn up the volume for chronic pain patients and what they have to deal with every month. Having to choose between pain, dignity or quality of life, such as being able to cook a meal, go to your child’s school event, or even making it to work, is a choice that none of us ever dreamed we’d have to make.

JAYMIE REED

The DEA, CDC, Congress and the lobbyists’ war against opioids has intimidated most all medical professionals to the point that many are choosing to avoid treating their patient’s pain because of the scrutiny they face. Just the additional record keeping the DEA requires for opioid prescribing makes it unprofitable, so some doctors simply jump ship and refer patients to the pill counting and urine screening protocol of a pain management specialist. The next stop after that is often an addiction recovery center.

Your own doctor should be the one person you can count on, but when we ask why and get the stock DEA answer, you feel lost. There has to be a better way because the war on opioids only adds an insurmountable amount of stress and worsens our pain levels, not to mention the added financial cost.

As the days go by, watching the war against opioids get nearly as much media coverage as Donald Trump, it’s become increasingly clear someone has an agenda. One possibility might be the lobbyists’ interests, which are often focused on increased funding for addiction treatment.

Will sending chronic pain patients to addiction centers be a solution or will it be responsible for a rise in the death toll? Any doctor will tell you a person in REAL pain won’t be helped by 30 days of counseling.  But, we are told the government requires it, all because of the witch hunt a few congressmen and lobbyists have created.

According to the CDC, the top 10 leading causes of death in the United States are

1. Heart disease: 614,348
2. Cancer: 591,699
3. Chronic lower respiratory diseases: 147,101
4. Accidents: 136,053
5. Stroke: 133,103
6. Alzheimer's disease: 93,541
7. Diabetes: 76,488
8. Influenza and pneumonia: 55,227
9. Nephritis (kidney disease): 48,146
10. Suicide: 42,773.

So the 18,893 overdose deaths in 2014 related to opioid pain medication don’t even make the top ten leading causes of death. Neither does the 10,574 overdose deaths related to heroin and other illegal drugs. Those numbers are concerning, but the real picture isn’t being painted.

Why do the mainstream media keep saying that opioids are a leading cause of death? Why are chronic pain patients made to feel like having an opioid prescription is equal to owning an assault rifle? No one in the media asks to hear from actual pain patients. And no one wants to know that thousands of chronically ill people like me are being treated like criminals by their own doctors.

The life of a chronic pain patient today is dreadfully frightening. Try visiting a pain management clinic and see if you could live your life that way. Searching the streets for drugs or finding a burial plot has never been a thought for me, but for some of us in pain they become an option when the only alternative is being treated like a prisoner in a recovery center. 

When the pain sets in with little or no medication, then the streets (if you can get there) or that burial plot start looking pretty good.  The news media needs to hear our voices and help end the attack on pain patients. 

Is anyone listening?

Jaymie Reed lives in Texas.

Pain News Network invites other readers to share their stories with us. 

Send them to:  editor@PainNewsNetwork.org.

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

Survey: Painkillers Bigger Problem than Alcohol

By Pat Anson, Editor

A new poll is adding further fuel to the fire over opioid abuse and the disproportionate amount of attention it gets compared to other health problems.

The survey by the Kaiser Family Foundation found that two-thirds of Americans consider the abuse of opioid pain medication an extremely or very serious problem. And four out of ten said they knew someone who was addicted to prescription painkillers, often a close friend or family member.

The problem is so serious that more Americans now consider painkillers a bigger problem than alcohol (66% vs. 57%), even though four times as many Americans die from alcohol related causes than from opioids.

Nearly 19,000 Americans died from prescription opioids in 2014, according to the Centers for Disease Control and Prevention. The National Institutes of Health estimates 88,000 people die annually from alcohol related causes.

Alcohol misuse is also estimated by NIH to cost the U.S. economy nearly $250 billion annually, while the “economic burden” of opioid abuse was estimated by the DEA at $53 billion in 2011.   

The Kaiser Foundation poll comes in the middle of an election season, as the White House and Congress consider various funding measures to address the so-called epidemic of opioid abuse and addiction.

The survey found that a large majority of Americans believe federal and state governments, doctors, and individuals who use prescription opioids are not doing enough to fight opioid addiction. Only about a third said police officers weren’t doing enough to enforce drug laws, a sign that many Americans don’t consider opioid abuse just a law enforcement issue.

Asked which policy efforts would be very or somewhat effective in reducing opioid abuse, over eight in ten said doctors and medical students should have better training in pain management and that there should be increased access to addiction treatment programs.  Less than half said putting warning labels on prescription opioids explaining the risk of addiction would be effective. Respondents were not asked if access to opioid pain medication should be reduced.

Policies Rated Very or Somewhat Effective in Fighting Opioid Abuse

• 88% Increase pain management training
• 86% Increase access to addiction treatment
• 84% Public education and awareness programs
• 83% Increase research about pain and pain management
• 82% Monitor doctors’ prescribing habits
• 63% Encourage disposal of extra pain meds
• 60% Reduce stigma of opioid addiction
• 48% Put addiction warning labels on opioid bottles

Putting the issue in perspective, while most Americans consider painkiller abuse a serious problem, the issue ranks well behind several other health problems such as cancer, diabetes, obesity and heart disease.

Health Problems Considered Extremely or Very Serious

• 86% Cancer
• 78% Diabetes
• 74% Lack of access to mental healthcare
• 73% Obesity
• 72% Heart disease
• 71% Contaminated drinking water
• 70% Heroin abuse
• 66% Painkiller abuse
• 61% Lack of access to healthcare
• 57% Environmental contamination
• 57% Alcohol abuse
• 54% Lack of access to affordable food

The Kaiser Foundation survey was conducted in mid-April in a random telephone sample of 1,201 American adults. The poll is estimated to have a sampling error of 3 percent.

To see the complete results of the Kaiser poll, click here.

Study Tests Stem Cells for Degenerative Disc Disease

By Pat Anson, Editor

An Australian biotech company is testing a new stem cell treatment for degenerative disc disease.

Mesoblast is enrolling patients in a Phase 3 study to see if a single injection of mesenchymal precursor cells (MPCs) taken from the bone marrow of healthy donors can relieve back pain and improve the mobility of patients with disc disease, which occurs when the cushions between vertebrae wear down because of aging, genetics or injuries.

Millions of MPCs are injected directly into the damaged disc in an outpatient procedure. Previous studies have found that MPCs have anti-inflammatory effects, and help strengthen and improve the stability of damaged discs. The treatment is being developed for patients who have exhausted other options for their back pain.

“Patients with this level of degeneration often try multiple treatments for relief, including pain medication, massage, physical therapy, chiropractic adjustments and acupuncture,” says lead investigator Kee Kim, MD, professor of neurological surgery and co-director of the University of California Davis Spine Center.

“For some of them, nothing seems to help, and we end up operating to remove the degenerated disc and fuse the spine to eliminate motion that may cause increased pain. We want to know if a single dose of this investigational therapy can offer relief without the need for surgery.”

UC Davis is one of 28 sites in the United States and Australia involved in the study. Participants with degenerative disc disease in the lower back will receive injections of either MPCs, MPCs with a carrier material (hyaluronic acid) or a placebo. Although the MPCs are collected from donors, tissue matching is not necessary.

Following treatment, participants will be evaluated by researchers six times over the course of a year. They also will be given the option to participate in an extension of the study to track their progress for three years after the initial injection.

Previous studies have found that MPCs have anti-inflammatory effects, and help strengthen and improve the stability of damaged discs. Researchers caution, however, that the treatment may not be effective for everyone.

“Many patients with back pain will not benefit from this stem cell therapy and may still require surgery,” Kim said. “For some patients, it could offer improvement. For these patients, it is worth exploring this alternative.”

You can find out more about the study by clicking here.

How I Learned to Handle Chronic Pain

By Emily Ullrich, Columnist

It occurred to me the other day that I’ve come a long way since my initial chronic illness set in. It has been a rough journey, but overall, I feel myself to be “improved.”

I have more self-esteem. I am more positive emotionally and spiritually. And I am far better at handling my multitude of symptoms than I was.

I went through complete and utter Hell, but came out of it, and I think it is really important for people who are new to chronic pain and for those who are really struggling to know that it will get better.

Let me be clear. I am not saying, “Don’t worry, it’ll all straighten itself out and you’ll be back to your old self in no time.” I am absolutely not saying that. But, I am saying if you work, learn, and lean into it, it will get better—at least you will get better at handling it.

I think every so often it is important to assess yourself, your goals, your progress, your changes, your heart, where you are, and where you need to go. When you develop chronic pain, these goals and dreams have to be adjusted.

In 2011, I returned to the United States a shell of a woman. My overly ambitious goal to start a film school and a new life in Kenya had not worked out the way I had imagined. Worst of all, I kept getting sick, and finally I had to put my tail between my legs and go home to momma, in Kentucky.

I woke up on my very first morning back on American soil screaming in pain. I had a kidney stone. It was some kind of divine intervention that this pain held off over the 25 hour flight, and the days before I left Kenya, because there’s no way I could have handled it or found help.

EMILY UlLRICH

This was just the beginning of a slew of chronic illnesses, diagnoses, misdiagnoses, doctor and hospital visits -- so many that they flow into one another and overlap in my mind -- and an ambush of tumultuous emotions, all of which would be a nightmare for me and my poor mother, for the next three years or so.

From the time the kidney stone stirred a commotion in my body, the pain changed, and it never really went away. It became chronic pelvic pain, then fibromyalgia, migraines, and a flare up of malaria returned after I had one of many endometriosis surgeries.

At the time, I did not have health insurance, and in Kentucky, a single woman without children could not get Medicaid. The main suggestion for my condition was the Lupron shot, which cost $700 over the internet through a Canadian pharmacy, the only possible way I could afford it.

It would put me into early menopause, which I really did not want. The shot would only last six months, and then I would have to come up with another solution.

All of this was overwhelming. Worst of all, I had to see about 15 gynecologists and make endless ER visits with uncontrolled pain, before finally someone suggested a pelvic pain specialist to me. He was the first person to tell me that this was not normal. Most every doctor before him had told me it was normal to have some degree of “female pain.”

In the days and months that passed, I tried to hold onto my job as a professor in Cincinnati, which was not a short commute. I was put on so many different medications (hormones, steroids, tricyclic antidepressants, fibro medications, antidepressants, benzodiazepines, pain meds, NSAIDs, the list goes on) that I found out the hard way that I am allergic to a lot of them!

My own doctor told me to lie to the government and say I was pregnant, so I could get Medicaid, and then say I had a miscarriage and get the Lupron shot. He also told me it was time to stop working. I cried to him. I cried to my mother. I cried to myself.

Meanwhile, I was having so many different reactions from the medications, I would be up all night, muscles twitching, grinding my teeth, restless legs kicking out of control. Every day, I woke up expecting to feel better, only to be disappointed. I would be so tired I could sleep for days. My entire body and mind were highly agitated to the extreme.

I did not yet grasp the concept of chronic. I knew the word by definition, but had no idea what it meant as it applied to my life.

Now, after endless doctor visits and hospitalizations, I am doing better. I am not better physically, in fact I have FAR more problems and diagnoses than I did. But, I’ve become a medical research specialist, and have been lucky enough to be affiliated with numerous pain organizations, support and information groups. I’ve started speaking out and advocating, which gives me strength. I’ve married a kind, supportive, understanding, empathetic, and wonderful man.

I have a handful of doctors I trust, and one -- my pain doctor, who I’ve only been with for a few months -- is an absolute angel who actually cares about my pain.

I am a work in progress, but I know I am making progress, and that’s what counts.

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis,  Interstitial Cystitis, migraines, fibromyalgia, osteoarthritis, anxiety, insomnia, bursitis, depression, multiple chemical sensitivity, and chronic pancreatitis

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the International Pain Foundation, as she is able.

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.

Montana to Host Arachnoiditis Seminar for Doctors

By Pat Anson, Editor

You might call it the world’s longest house call.

Dr. Forest Tennant, a pain management physician in West Covina, California, will travel nearly a thousand miles this summer to meet with patients and doctors in Helena, Montana. Tennant will lead a two-day seminar on arachnoiditis, a chronic and painful spinal disease that leaves many patients permanently disabled.

Tennant’s trip to Montana is a reversal of sorts. For years, dozens of desperate arachnoiditis patients from Montana and other states have traveled cross-country to see him at his pain clinic outside Los Angeles.

“In the past it was considered a rare disease with no hope. We can do a lot to diagnose and to treat it now,” says Tennant, who has done extensive research on the disease and has launched an Arachnoiditis Education Project for physicians.

Arachnoiditis has nothing to do with arachnophobia, a fear of spiders. It’s an inflammation of the arachnoid membrane that surrounds the spinal cord. Over time, the inflammation causes scar tissue to build around spinal nerves, which begin to adhere or stick together. This leads to adhesive arachnoiditis, which causes severe chronic pain and other neurological problems. The disease is progressive, incurable and difficult to treat.

Once considered rare, Tennant is seeing more and more cases.

FOREST TENNANT, MD

“Every pain practice I talk to now says ‘Oh, I have a patient with this.’ This is an emerging issue that every practice in the country will have to become aware of, just like Hepatitis C or AIDS or Lyme disease. It’s one of these diseases that’s here. It’s not going away. The fact is we’re all going to grow older and we all have spines that are going deteriorate. We’re going to end up with this. We have the technology and the knowledge now to diagnose it and the protocol to treat it.” 

Tennant uses a combination of pain medication, hormones and anti-inflammatory drugs to manage the symptoms of arachnoiditis and possibly stop its progression. He wants to share with Montana doctors what he’s learned.  

“We would like to identify some practitioners in the area who are interested in the disease and who would be willing to treat patients,” says Tennant. “We’d also like to foster the development of patient groups for self-support. Those are the two goals.”

Montana may be small in terms of population, but the Big Sky state has fostered some of the most vocal and educated grassroots activists in the pain community. Several have arachnoiditis, and after years of dealing with a healthcare system that failed to treat or even recognize their symptoms, they’re finally getting some attention.

Kate Lamport, a 33-year old mother of four from Helena, developed arachnoiditis after a series of epidural injections for child birth and bulging discs in her back. Her back pain was originally thought to be from fibromyalgia or Lyme disease, but on a trip to California to see Tennant a few months ago, she was diagnosed with arachnoiditis.   

“While I was there, I was blown away by the amount of people that have arachnoiditis and how undertreated and under acknowledged a disease it is,” says Lamport, who pitched the idea of a seminar to Tennant.

“I asked him if I put together a conference if he would speak at it and teach other doctors and patients that don’t have an opportunity to come see him,” says Lamport. “Doctor Tennant is so knowledgeable. If I call him and I say this is what’s acting up, he knows what to say and what to do. A month ago my adrenal glands shutdown and that’s when you die. And he knew what to do to get me out of that.”

Many patients are convinced they developed arachnoiditis after surgeries or epidural steroid injections that damaged their spines. But Tennant believes the underlying causes are more complex.

“There are several ways to get this. Unfortunately, there’s too much focus on medical procedures,” he says Tennant. “There are people we now know who have gotten it from viral infections, Lyme disease, auto-immune disorders, and what have you. There are a lot of different reasons why you get this and medical procedures can accelerate it.”

There’s a great deal of debate in the medical community over the value of spinal injections, surgeries, spinal cord stimulators and other “interventional” procedures to treat back pain. About 9 million epidural steroid injections are performed annually in the United States, often as a substitute for opioid pain medication.

Tennant says epidurals can be effective, but are increasingly overused, with some patients getting dozens of injections annually.

“Unfortunately, somebody who’s had a lot of back procedures is likely to end up with arachnoiditis. It’s a complication of medical procedures that may not be able to be avoided. And I want to make a point of this. Somebody who needs back surgery may have to take the risk,” he says.

The arachnoiditis seminar will be held July 9th and 10th at the Radisson Hotel in Helena, Montana's capital. For further additional information or to register for the conference, click here.

Montana Public Radio recently broadcast a two-part series on “pain refugees” leaving the state for treatment and the fear many Montana doctors have about prescribing opioids, which may have led one pain patient to commit suicide.