Fed Up With Media Coverage of Opioids

By Janice Reynolds, Guest Columnist

I got fed-up the other day with another article in the newspaper that lacks veracity and is truly not in the interests of the “people’s right to know,” as it is untrue, biased, and does not include any input from true experts.  

Where has integrity and veracity gone when it comes to the press?  I speak particularly of the Portland Press Herald, but many of the other news media also confuse opinion with fact and sensationalism with truth.

100 million people in the U.S. suffer from chronic pain related to many different causes, including cancer, yet no politician seems to care.  They are very uncompromising that an addict’s life is much more important. 

When the media is asked to show the evidence for the oft repeated claim that “studies have shown conclusively opioids don’t help chronic pain, in fact they make it worse,” requests are denied.  This is likely because there are no such studies on humans.

The one study which claimed opioids made pain worse was done on rats who had essentially been tortured – which is not evidence at all. 

Pain is pain, and chronic non-cancer pain does not differ physiologically from other pain.  With some types of pain, another medication may work better than an opioid, but most severe pain is relieved best by an opioid. 

A recent Associated Press article republished in the Portland Press Herald is an example of half-baked reporting:

“At least 43 states’ governors signed on to the Compact to Fight Opioid Addiction, committing to fight the epidemic fueled by the overprescribing of prescription pain relievers.”

There is no evidence to support this statement what-so-ever.  If you look at the history of the current epidemic, it has nothing to do with people with chronic pain.  There are many problems people want to apply to the epidemic’s cause, including the advent of OxyContin, but that is a correlation rather than a causation. Most overdoses now are heroin and illegal fentanyl related.  Blaming the overdoses on prescription drugs is pure conjecture. 

The “overprescribing” of opioids is pure opinion -- unlike the overprescribing of antibiotics, which is based on evidence and is a justifiable use of the word. 

One of the worst references in the article is the use of Andrew Kolodny.  The man is an addiction treatment doctor who his chief medical officer of Phoenix House, which operates a chain of addiction recovery centers (which the article fails to point out). He knows nothing about pain management and is a known opiophobic, yet is considered an expert on pain by the AP:

“Until recently, many policymakers believed the epidemic was fueled by drug abusers and that limiting prescriptions would hurt legitimate pain patients, Kolodny said. But now there is growing awareness that doctors and dentists are prescribing too many painkillers, which are addictive and hurting many otherwise good people, he said.”

Other “real” pain experts such as Dr. Forest Tennant, Dr. Lynn Webster, Chris Pasero and many others who are acknowledged internationally should have been quoted or allowed to give a counterpoint. 

The sin of omitting the opposition’s opinion is greater than lying outright.  When the media stacks the deck to reflect their opinion only, how can they be trusted? 

Meanwhile, people with pain suffer, many cannot even find a provider and suicides are increasing.  Insurance and Medicaid will not pay for many of the non-opioids and non-pharmaceutical interventions, and very dangerous drugs such as NSAIDs (ibuprofen, naproxen, diclofenac, etc.) are pushed. Some estimate there are 20,000 deaths a year from NSAIDs, but you don’t see that in the media. 

People with pain have become marginalized, and subjected to prejudice and bias, much of it due to media coverage of chronic pain and opioids.  Everyone should be concerned, as they are going after acute pain next.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking with pain. 

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

Lower Back Pain Linked to More Drug Use

By Pat Anson, Editor

People with chronic lower back pain are more likely to have used illicit drugs -- including marijuana, cocaine, heroin and methamphetamine -- compared to those without back pain, according to new research published in the journal Spine.

The study also found that people with lower back pain who had used illicit drugs were somewhat more likely to have an active prescription for opioid pain medication (22.5% vs. 15%).

Lower back pain is the world’s leading cause of disability and most people will suffer from it at least once in their lives. Although nearly a quarter of the opioid prescriptions written in the U.S. are for low back pain, medical guidelines often recommend against it.

Researchers analyzed data from over 5,000 U.S. adults who participated in a nationally representative health study and found that nearly half (49%) of those who reported lower back pain admitted having a history of illicit drug use, compared to 43% of those without back pain.

Current use of illicit drugs (within the past 30 days) was much lower in both groups; 14% versus nine percent.

The study did not differentiate between recreational and medical marijuana use, nor did it draw a distinction between marijuana use in states where it is legal and where it is not. All marijuana use was considered "illicit."

All four illicit drugs in the survey were more commonly used by people with low back pain compared to those without back pain. Rates of lifetime use were 46.5% versus 42% for marijuana; 22% vs. 14% for cocaine; 9% vs. 5% for methamphetamine; and 5% vs. 2% for heroin.

Researchers said there was no evidence that illicit drug use causes lower back pain, only that there was an association between the two that bears watching when opioids are prescribed.

“The association between a history of illicit drug use and prescription opioid use in the cLBP (chronic lower back pain) population is consistent with previous studies, but may be confounded by other clinical conditions,” said lead author Anna Shmagel, MD, Division of Rheumatic and Autoimmune Diseases at the University of Minnesota.

“Mental health disorders, for example, have been associated with both illicit substance use and prescription opioid use in the chronic low back pain population. In the context of management, however, illicit drug abuse is predictive of aberrant prescription opioid behaviors. As we face a prescription opioid addiction epidemic, careful assessment of illicit drug use history may aid prescribing decisions.”

In a recent analysis of prescriptions filled for 12 million of its members, pharmacy benefit manager Prime Therapeutics found that nearly a quarter of the opioid prescriptions were written to treat low back pain.

"Our analysis found low back pain was the most common diagnosis among all members taking an opioid, even though medical guidelines suggest the risks are likely greater than the benefits for these individuals," said Catherine Starner, PharmD, lead health researcher for Prime Therapeutics.

In a 2014 position paper, the American Academy of Neurology said opioids provide “significant short term pain relief” for low back pain, but there was “no substantial evidence” that long term use outweighs the risk of addiction and overdose.

Is Chronic Pain a Family Affair?

By Pat Anson, Editor

We can credit – or blame – our parents for many things, including our eye color, hair color, height, weight, personality, even our cravings for certain foods.

And if our parents have chronic pain, we are also more likely to suffer from pain ourselves, according to research recently published in the journal Pain. 

“Offspring of parents with chronic pain are at increased risk for pain and adverse mental and physical health outcomes,” wrote co-authors Amanda Stone of Vanderbilt University and Anna Wilson of Oregon Health & Science University.

"Although the association between chronic pain in parents and offspring has been established, few studies have addressed why or how this relation occurs."

Stone and Wilson developed a “conceptual model” of how chronic pain can be transmitted from parent to child through genes, parenting, stress, and lifestyle choices.

"Such a framework highlights chronic pain as inherently familial and intergenerational, opening up avenues for new models of intervention and prevention that can be family-centered and include at-risk children," they wrote.

The researchers identify five "plausible mechanisms" to explain the transmission of chronic pain from parent to child:

• Genetics. Children of parents with chronic pain might be at increased genetic risk for sensory as well as psychological components of pain. Research suggests that genetic factors account for about half of the risk of chronic pain in adults.
• Early Neurobiological Development. Having a parent with chronic pain may affect the functioning of the nervous system during critical periods of child development. For example, a baby's development might be affected by the mother's stress levels or behavior during and after pregnancy.
• Social Learning. Children may learn "maladaptive pain behaviors" from parents, such as catastrophizing and excessive worrying about pain.
• Parenting and Health Habits. Chronic pain risk could be affected by parenting behaviors linked to adverse child outcomes--for example, permissive parenting or lack of consistency and warmth. The parents' physical activity level and other health habits might also play a role.
• Exposure to Stress. There may be adverse effects from growing up in stressful circumstances related to chronic pain -- for example, financial problems or parents' inability to perform daily tasks.

Other factors that may explain why some children are at greater risk include chronic pain in both parents, the location of the parent's pain, and the children's personal temperament.

"The outlined mechanisms, moderators, and vulnerabilities likely interact over time to influence the development of chronic pain and related outcomes," wrote Stone and Wilson, who hope their model will help guide future research toward developing early prevention and treatment approaches for children at risk of chronic pain.

Poor Fitness Leads to Childhood Pain

Another recent study in Finland found that poor physical fitness and sedentary behavior are linked to pain in children as young as 6-8 years of age.

The Physical Activity and Nutrition in Children (PANIC) study at the University of Eastern Finland analyzed the physical fitness, exercise, hobbies, body fat and various pain conditions in 439 children. Physically unfit children suffered from headaches more frequently than others. High amounts of screen time and other sedentary behavior were also associated with increased prevalence of pain conditions.

“Pain experienced in childhood and adolescence often persists later in life. This is why it is important to prevent chronic pain, recognize the related risk factors and address them early on. Physical fitness in childhood and introducing pause exercises to the hobbies of physically passive children could prevent the development of pain conditions,” the study found.

Woman Arrested in California Fentanyl Investigation

By Pat Anson, Editor

A 50-year old northern California woman has been arrested for drug trafficking after a federal grand jury indicted her for illegal possession and distribution of hydrocodone and fentanyl.  Mildred Dossman was arrested at her home in Sacramento. She faces up to 20 years in prison and a $1 million fine if convicted.

Federal prosecutors did not reveal many details in the indictment, but Dossman’s arrest appears to be connected to a wave of fentanyl overdoses earlier this year that killed at least 12 people and hospitalized dozens of others in the Sacramento area.

The fentanyl involved in those deaths was disguised as Norco, a prescription pain medication that combines hydrocodone with acetaminophen.

Dossman was allegedly involved in drug deals on January 18 and March 25 of this year – which fits the timeline of the fentanyl overdoses.

Fentanyl is a powerful opioid that is 50 to 100 times more potent than morphine. It is prescribed legally in patches and lozenges to treat severe chronic pain, but illicitly manufactured fentanyl is fast becoming a scourge across the U.S. and Canada, where it is blamed for thousands of fatal overdoses.  

In addition to the counterfeit Norco, fentanyl has also been found in fake oxycodone and Xanax tablets. The counterfeit medication appeared on the streets at about the same time the Centers for Disease Control and Prevention released controversial guidelines that discourage doctors from prescribing opioids for chronic pain.

“I've had one of these so called super Norco’s,” a 25-year old Sacramento man told Pain News Network in March.  “It had the markings of a regular prescription, M367. I only took a half just in case because of the news from the day and luckily I did. It was unlike any high I've had. It made me dizzy.  I couldn't see straight or sleep.”

“David” bought 16 of the fake Norco pills from a friend for $5 each, not knowing he was actually getting fentanyl. He initially began taking opioid pain medication for a herniated disc several years ago, but switched to street drugs after being abruptly cut off by his doctor. 

“I tried everything to get more and more prescription drugs prescribed. After that I had no choice but to turn to the street. It's a huge problem here in Sacramento,” said David. “Now there is such a high demand for the pills because of the increased regulations on them and not being able to scam an early refill. It has caused the price to spike on the streets and as soon as the word gets out someone has them they are immediately sold for ridiculous prices. It’s not all addicts and not all pain patients. The doctors around here are cutting people down on the amount they are prescribed, causing them to have nowhere else to turn but the neighborhood dealer.”

A DEA spokesman told PNN last month the U.S. was being “inundated” with illicit fentanyl, particularly in the Midwest and northeastern states. Massachusetts, Rhode Island, Ohio and Delaware recently reported an “alarming surge” in fentanyl related deaths. In some states, the number of deaths from fentanyl now exceeds those from prescription opioids.

“We think fentanyl and fentanyl overdoses have been underreported over the years in a lot of places. But we think people are now starting to pay more attention to it,” said DEA spokesman Rusty Payne.

Pain Companion: Rediscovering Yourself in Pain

By Sarah Anne Shockley, Columnist

Pain is so pervasive and so enmeshed with our daily experience that we can forget what life was like without it. We may lose a sense of who we were before pain entered the picture.

When I began to return from the most intense part of my own journey with pain, I realized that I was going to have to find a way to disentangle myself from it, to disengage my sense of who I was, my identity, from pain.

At the time, I couldn’t find a sensation of body-without-pain, even in my imagination, and I couldn’t envision a future without pain, though I desperately desired it. I had forgotten who I was without pain, and I wasn’t sure who I had become from the experience.

I certainly knew I had changed irrevocably, but I wasn’t quite sure in which direction all the changes lay.

Pain had become so embedded in my body, my daily routines, and my awareness, that this constant companion had become too familiar, like a terrorist and his hostage. Perhaps this is a familiar feeling for you.

The difficulty doesn’t lie in wanting to keep pain around like an old pal, far from it. It lies in the fact that pain has been with us for so long that we aren’t sure what will be left of us when it finally departs.

Will it take most of us with it? What does it mean about who we are if pain never leaves? Maybe we’re not even sure we have an identity beyond the pain anymore.

This merging of the sense of self-identity with the self-in-pain is really important to recognize.

I found that, in order to find myself again and to re-engage with the inner me (as opposed to seeing myself only as the-one-in-pain), I had to disengage my self-image and feelings of self-worth from my experience of pain and my body’s limitations.

I worried that my injury, my pain, and my being in need of assistance had turned me into a weak and needy person. I had to realize that just because my body felt weak, didn’t mean I was weak as a person. Just because my body was in pain, didn’t mean I was being a pain. Because my pain created new needs which I had to learn to communicate, didn’t mean I had turned into a needy person.

Many of us who have been in pain for a long time have been living in reaction to pain. We have allowed pain to become the organizing principle in our lives. s the only real power in life. We might shift all our choice making onto pain’s shoulders. After all, it seems to rule everything.

This seems like the only choice there is, but there is a subtle but important shift that seems to be necessary during the healing process, and that is to move the responsibility, power, and decision-making back onto our own shoulders. This is part of dis-identifying with pain and disentangling ourselves from it.

While pain is certainly the reason we can’t do many things, we need to be careful not to allow ourselves to think that it is the director of our lives. We can make the small but vital shift in our perception of who we are in pain, as we begin to find a way out of living utterly beholden to pain and connected to it on an identity level.

As far as I can tell, this process has the potential of gradually unfolding something like these five steps:

1. Pain Arrives: We resist, we do all the “right” things, including therapies and medications. Pain doesn’t leave, so we try harder to get rid of it, adding alternative therapies, prayer, more willpower, more and different medications, etc.

2. Pain Stays: It still won’t leave. It may even get worse. The longer we live with pain, the more difficult it becomes to see ourselves beyond or through it.

3. We Learn to Work with Pain: We come to a place of honoring pain’s presence and its unusual gifts. We stop fighting against pain and begin to work with it and through it, regaining a sense of self that is not utterly beholden to pain as dictator and director. We recognize pain as something that is trying to heal itself in and through us.

4. We Realize Pain is One Aspect of our Lives, Not the Totality: Pain represents a very demanding part of our experience, but it is not who we are. It is a landscape we are walking through. Our inner selves are still intact. We learn to work with pain differently, seeing both it and ourselves from a different perspective.

5. Pain Begins to Relax, reduce, and dissolve.

Ultimately, whether pain completely leaves, or it stays for some time longer, we can let go of identifying with the pain as us, and ask ourselves who we want to become from and through the incredibly challenging experience of living with pain.

When we reconnect with our inner selves beyond the pain, we can find renewal. We can accept all of our experience with pain as part of a greater path, putting ourselves at the center (rather than pain), and live with more ease, grace, well-being, and inner peace.

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.

CDC: Opioid Guidelines 'Not a Rule, Regulation or Law'

By Pat Anson, Editor

It’s no secret in the pain community that many patients are being taken off opioid pain medication or weaned to lower doses because of an overzealous reaction by doctors to the CDC’s opioid prescribing guidelines.

Those guidelines – which discourage opioid prescribing for chronic pain -- are meant to be voluntary and are intended only for primary care physicians. Yet they are having a chilling effect on many doctors and their patients.

One such patient, a retired Nevada pharmacist who took high doses of opioids for years for chronic back and hip pain, refused to be silent when his pain management doctor abruptly lowered his dosage to 90 mg (morphine equivalent) a day – the highest dose recommended by the CDC.  

Richard Martin wrote 27 letters to the CDC and didn’t mince words, saying doctors in the Las Vegas area “are scared shitless that the DEA will get them” and that their malpractice insurance rates would skyrocket if they didn’t follow the guidelines to the letter.

“All of you at the CDC and like-minded groups, individuals, etc. are causing hundreds of thousands if not millions of people to suffer in pain needlessly,” wrote Martin.

“The medical community has failed me. I was stable on my opioid regimen for over 6 years. No tolerance, no cheating, no hyperglasia and a pretty good quality of life. Last year my primary MD up and told me to go to a pain specialist. He would no longer provide me with opioid prescriptions. The first thing the pain doctor did was decrease my opioids. Of course I am in much more pain now. Due to my decreased level of activity my blood sugar levels have spiked. I used to be able to walk up to 3 miles every other day. Now I can’t go walking. I may have to start taking insulin.”  

To see all of Martin’s letter, click here.

Martin received two responses from the CDC. One appears to be nothing more than a form letter, in which a CDC official blandly wrote, “We are sorry to hear about your health problems.”

The other letter was from Debra Houry, MD, Director of the CDC’s National Center for Injury Prevention, which oversaw the guidelines’ development. In her letter, Houry appears to acknowledge that the guidelines are being too widely implemented by doctors.

“The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients to address chronic pain,” wrote Houry.

“Specifically, the Guideline includes a recommendation to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy. The Guideline is not a rule, regulation, or law. It is not intended to deny access to opioid pain medication as an option for pain management. It is not intended to take away physician discretion and decision-making.”

To see Houry’s letter in its entirety, click here.

Martin wrote back to Houry and challenged her to address the issue of patients being abruptly weaned from opioids more publicly.

DEBRA HOURY, MD

“My pain management doctor and his group are quoting your guidelines and more or less cowardly blaming you for the problem. Personally, I think they may be using this as an excuse to get rid of Medicare patients and perform more interventional injections or procedures,” he wrote in his follow-up letter, which you can see by clicking here.

“The CDC, in my opinion, should change the dosing guideline… The CDC should EMPHASIZE as you stated ‘The Guideline is not a rule, regulation, or law. It is not intended to deny access to opioid pain medication.’”  

Martin has yet to receive a response from Houry. When Pain News Network contacted the CDC about the letters, we were encouraged to post them. But the agency declined an offer to explain its position further.

Martin’s letter writing campaign hasn’t ended. He’s written to the American Association of Retired Persons (AARP) about the “huge tragedy unfolding across America” and has been contacted by Pharmacy Today magazine about having one of his letters published.

Patient Survey about CDC Guidelines

Another pain patient who is fighting back is Lana Kirby, a 60-year old retired paralegal who suffers from chronic back pain and several other chronic illnesses. Kirby and her husband recently moved to Florida, but found she can't find a doctor in that state willing to prescribe the pain medication she needs. So every three months, Kirby drives back to her home state of Indiana to see a doctor and get her prescriptions filled.

“In all my years as a paralegal, I've never seen anything like this,” she told PNN.  “Quite frankly, if an attorney were to take this to Federal Court, it would be a slam dunk due to the damages occurring on an ongoing basis and the ‘avoidable decline.’ We all know it costs a lot more to take care of a bedbound person than someone who can take care of themselves.  And if that means using opioids, that is the way it should be.  But as far as I know, no one has found an attorney with the resources to take on a case like this.”

Kirby is conducting an online survey of pain patients, asking if their opioid doses have been lowered since the CDC guidelines came out or if they have been discharged or abandoned by their doctors.

“The reason I did the survey was because I was talking to hundreds of pain patients everyday online and they all were saying the same thing,” she said. “Having a legal background, I felt that the damages needed to be documented and quantified in order to prove what was going on and the volume of people affected.”

To take Kirby’s survey, click here.

Stem Cell Therapy Could Avoid Joint Replacement

By Pat Anson, Editor

An experimental stem cell treatment that grows new cartilage could someday help millions of arthritis patients avoid joint replacement surgery.

Researchers at Washington University School of Medicine in St. Louis and Cytex Therapeutics in Durham, N.C. have developed a 3-D, biodegradable synthetic scaffold that is molded into the precise shape of a patient’s hip joint.

The scaffold, which is covered with cartilage made from the patient’s own stem cells, is designed to be implanted onto the surface of an arthritic hip.

Resurfacing the hip joint with this “living” tissue could ease arthritis pain, and may delay or even eliminate the need for hip replacement surgery, according to researchers.

Joint replacement surgery is usually performed on the elderly to relieve pain from osteoarthritis, a painful and disabling condition caused by a loss of cartilage and the degradation of joints. Over a million hip and knee joint replacement surgeries are performed annually – a number expected to surpass four million by 2030 due to the aging of the U.S. population. 

WASHINGTON UNIVERSITY IMAGE

“We’ve developed a way to resurface an arthritic joint using a patient’s own stem cells to grow new cartilage, combined with gene therapy to release anti-inflammatory molecules to keep arthritis at bay. Our hope is to prevent, or at least delay, a standard metal and plastic prosthetic joint replacement,” said Farshid Guilak, PhD, a professor of orthopedic surgery at Washington University.

After inserting a gene into the newly grown cartilage and activating it with a drug, researchers say the gene will release anti-inflammatory molecules to fight arthritis.

“When there is inflammation, we can give a patient a simple drug, which activates the gene we’ve implanted, to lower inflammation in the joint,” said Guilak. “We can stop giving the drug at any time, which turns off the gene.”

By adding gene therapy to the stem cell and scaffold technique, Guilak and his colleagues believe it will be possible to coax patients’ joints to fend off arthritis, preserve cartilage, and function better for a longer time.

The 3-D scaffold is built using a weaving pattern that gives the device the structure and properties of normal cartilage. It is made with hundreds of biodegradable fiber bundles that are woven together to create a high-performance fabric that functions like normal cartilage.

“The woven implants are strong enough to withstand loads up to 10 times a patient’s body weight, which is typically what our joints must bear when we exercise,” said Franklin Moutos, PhD, vice president of technology development at Cytex.

Scientists have tested the tissue engineering in cell culture, and some customized implants are being tested in laboratory animals. If all goes well, such devices could be ready for testing in humans in three to five years.

Currently, there are about 30 million Americans who have osteoarthritis. That number includes a growing number of younger patients — ages 40 to 65 — who have limited treatment options.  Doctors are often reluctant to perform hip replacement surgery on patients under age 50 because prosthetic joints typically last for less than 20 years. A second surgery to remove a worn prosthetic can destroy bone and put patients at risk for infection and other complications.

“We envision in the future that this population of younger patients may be ideal candidates for this type of biological joint replacement,” said Bradley Estes, PhD, vice president of research and development at Cytex.

The research findings, which are published in the Proceedings of the National Academy of Sciences, are supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases and the National Institute on Aging, which are both part of the National Institutes of Health (NIH).

Updated Device Helps Prevent Migraines

By Pat Anson, Editor

A new pocket-sized wearable device is available to help treat and prevent migraine headaches.

Cefaly Technology has released the Cefaly II, an updated version of the Cefaly I, which is worn over the forehead like a headband and uses small electrical impulses to stimulate the trigeminal nerve, which has been associated with migraine headaches.

The Cefaly II is much smaller and fits in the palm of a hand. Like its predecessor, the device is worn on the forehead, but is held more securely in place by a magnet. Because of its smaller size, the manufacturer believes the Cefaly II will be more accessible and easier to use.

“This compact device is so easy to tuck in a pocket or purse and I am hopeful it will further increase compliance and bring an even larger reduction in migraine attacks to patients,” said Dr. Pierre Rigaux, Chief Executive Officer of Belgium-based Cefaly Technology.

“Now that the device is so small, it’s a big deal because patients can have their Cefaly II with them wherever they go, which means they’ll be able to use it more readily, at their most convenient time.”

cefaly technology image

The Cefaly II uses a magnet to attach itself to a self-adhesive electrode worn directly on the forehead. The rechargeable, battery powered device sends tiny electrical impulses through the skin to desensitize the upper branches of the trigeminal nerve and reduce the frequency of migraine attacks. Patients have full control of their daily 20-minute session and can ramp up the intensity to their own comfort level.

In a small study of 20 migraine sufferers, published in The Journal of Headache and Pain, the Cefaly I provided "statistically significant" pain relief and an 81 percent reduction in the number of migraine attacks. Patients in the study also said they used significantly less migraine medication.

The electrode and output of the Cefaly II is identical to the Cefaly I, according to the company.

Here’s a company produced video of how the Cefaly II works:

The Cefaly II is only available by prescription and costs $349, with a 60-day money back guarantee. The device can be ordered online by clicking here. The Cefaly I will no longer be offered, but the electrodes for it will be available for another 5 years. Cefaly Technology has sold about 20,000 of the devices in United States and 80,000 outside the U.S.

Migraine is thought to affect a billion people worldwide and about 36 million adults in the United States, according to the American Migraine Foundation. It affects three times as many women as men. In addition to headache pain and nausea, migraine can also cause vomiting, blurriness or visual disturbances, and sensitivity to light and sound.

Lies, Damned Lies, and Overdose Statistics

By Pat Anson, Editor

“There are three kinds of lies: Lies, damned lies, and statistics.”

That famous quote, often attributed to British Prime Minister Benjamin Disraeli, was first used by Mark Twain in 1906. One hundred and ten years later, we still don’t know who said it first or why.

Which brings us to overdoses -- and the confusing, sometimes exaggerated, and often contradictory statistics on how many Americans are dying daily from opioid pain medication.  

According to the nation’s news media, anywhere from dozens to hundreds of Americans are dying every day from drug overdoses -- or as the Los Angeles Times boldly claimed today, “Overdose deaths now total 130 every day, or roughly the capacity of a Boeing 737.”

A Boeing 737? Really?

According to Boeing, a 737 can hold between 85 and 215 passengers, depending on the model. But maybe the Times is just giving us a ballpark estimate -- which may be entirely appropriate, given the muddled and murky reporting we get on overdoses.

The Times story got me curious about how other news organizations are reporting the overdose numbers. Here is a sampling:

“100 Americans die of drug overdoses each day.” The Washington Post

 “Dozens of Americans die daily from overdoses of pain relievers, heroin and other opioids.” Associated Press

“The United States averages 110 legal and illegal drug overdose deaths every day.”  Pittsburgh Post Gazette

“The number of these deaths reached...  about 125 Americans every day.” New York Times

 “More than 120 Americans die of opiate overdoses every day.” Logan Daily News

           “44 people in the U.S. die every day from overdose of prescription painkillers.” Des Moines Register

“More than 40 Americans die every day from prescription opioid overdoses.” Fox News

“Roughly 78 Americans die every day from overdoses of opioids.” Fox News

Yes, that’s right, Fox News reported two different estimates. To be fair, the numbers depend on whether you're counting all drug overdoses, opioid overdoses alone, or just prescription painkiller overdoses. Still, the numbers are all over the map and probably confusing to most readers.

Advocacy groups and politicians also play the numbers game:

“Every day, 46 Americans die from using prescription painkillers.” American Association of Retired Persons

“Every day, about 60 people die from opioid overdoses -- 44 from narcotic painkillers and 16 from heroin.” Physicians for Responsible Opioid Prescribing

“Over 130 Americans die every day from opioid and heroin overdoses.”  The Police Assisted Addiction Recovery Initiative

“Each day, 129 people die from drug overdoses in our country.”  Sen. Patrick Leahy (D-Vermont)

“Every day, 51 Americans die as a result of prescription opioid overdose.” Sen. Joe Manchin (D-West Virginia)  

So who is right? According to the Centers for Disease Control and Prevention, 28,647 Americans died from opioid overdoses in 2014, which works out to about 78 per day -- the number most often reported by the nation’s news media.

It is also a very misleading number, because many of those deaths include overdoses from heroin, illicit fentanyl and other illegal opioids. Take out the illegal drugs and the CDC admits that only about “half of all opioid overdose deaths involve a prescription opioid.”

That estimate too is misleading, because some heroin and illicit fentanyl deaths are wrongly reported as prescription opioid overdoses, because the coroner or medical examiner never actually performed a toxicology test on the deceased. The CDC admits that as well, but not too loudly.

So the next time you see someone report on the number of overdose deaths in the United States (and tries to fill a Boeing 737 in the process), remember that quote about “Lies, damned lies, and statistics.”

And thank either Mark Twain or Benjamin Disraeli for reminding us that statistics don’t always tell the truth.

Two Drug Combo More Effective for Fibromylagia

By Pat Anson, Editor

Two drugs commonly prescribed for fibromyalgia – Lyrica and Cymbalta – are more effective in treating the disorder when used together, according to a new study by Canadian researchers.

Lyrica (pregabalin) is an anti-seizure nerve drug, while Cymbalta (duloxetine) works primarily as an anti-depressant. Both have been used for years to treat fibromyalgia -- a poorly understood disorder characterized by deep tissue pain, fatigue, insomnia, and mood swings. Until now no one has studied how effective the two drugs could be when used in combination.

"We are very excited to present the first evidence demonstrating superiority of a duloxetine-pregabalin combination over either drug alone," said lead author Ian Gilron, MD, Director of Clinical Pain Research at Queen’s University in Kingston, Ontario.

“The results of this trial suggest that combining pregabalin with duloxetine can safely improve outcomes in fibromyalgia including pain relief, physical function and overall quality of life.”

This was a small study – only 41 fibromyalgia patients participated – and the researchers admit that larger trials are needed to see if the results can be replicated. The new research was published in the journal Pain.

The study is the latest in a series of clinical trials -- funded by the Canadian Institutes of Health Research -- which Gilron and his colleagues have conducted on combination therapies for chronic pain conditions. By studying promising drug combinations, they hope to show physicians how to make the best use of current treatments.

"The value of such combination approaches is they typically involve drugs that have been extensively studied and are well known to health-care providers," says Gilron.

Patients in the study were divided into three groups that either took pregabalin alone, duloxetine alone or a combination of the two for six weeks. Doses were gradually increased in the study to the maximum tolerated dose. When used in combination, patients could only tolerate relatively low doses of pregabalin and duloxetine, suggesting the drugs have an overlap effect when used together.

“The pharmacological diversity of a pregabalin-duloxetine combination is a mechanistically appealing feature that increases the likelihood of additive analgesic actions although there could similarly be some additive adverse effects with this combination. Even at significantly lower doses during combination therapy, superior global pain relief during combination therapy would suggest a greater additive effect for pain reduction than for side effects,” said Gilron.

The biggest side effect of the pregabalin-duloxetine combination was drowsiness, and the researchers admit that reduced physical activity caused by drowsiness could have contributed to pain reduction. 

Patients have long complained of other side effects from pregabalin and duloxetine when used separately, such as weight gain, nervousness, and brain fogginess. Many have also reported severe withdrawal symptoms and “brain zaps” when trying to get off the drugs. The study apparently didn’t address those issues. 

Lyrica (pregabalin) is one of Pfizer’s top selling drugs and generates over $5 billion in revenue annually. In addition to fibromyalgia, Lyrica is approved by the Food and Drug Administration to treat chronic pain associated with epilepsy, shingles, diabetic peripheral neuropathy, and spinal cord injury. The drug is also prescribed “off label” to treat lumbar spinal stenosis, the most common type of lower back pain in older adults.

Cymbalta (duloxetine) generated sales of $5 billion for Eli Lilly until its patent expired in 2013 and cheaper generic versions of duloxetine became available. Cymbalta is approved for fibromyalgia, neuropathy, osteoarthritis, depression and anxiety.

Only one other medication – Savella – is approved by the FDA for fibromyalgia, but it is not as widely used as the other drugs.

Fibromyalgia was initially thought to be a musculoskeletal disorder, but research now suggests it's a disorder of the central nervous system - the brain and spinal cord. Researchers believe that fibromyalgia amplifies painful sensations by affecting the level and activity of brain chemicals responsible for processing pain signals. It affects twice as many women as men.

A Pained Life: The Art of Pain

By Carol Levy, Columnist

There was a gigantic painting in the dining room of my parents house. My mother was the artist. It was beautiful, captivating and very, very unsettling.

Dead center she had painted a person crouched down in a tight position. It has been many years since I last saw it, but as I recall one hand was held outstretched towards the viewer. This person was surrounded by triangles, each one a different color, all pointing downward towards the person in the middle.

I did not like to look at it, but I never thought through what bothered me so much about it -- until I became involved with Susanne Main's research into creative depictions of life with chronic pain.

Susanne is an associate lecturer and PhD candidate at the Open University in the United Kingdom. Using online platforms, she is exhibiting artistic renderings by chronic pain patients.

Some are in your face: this is my pain, my life. LISTEN TO ME!

Some are explanatory: this is what arthritis does to my body. Some show the emotional effects of living with daily pain.

The goal of the Exhibiting Pain project is to find new ways of communicating to each other and the medical community what our pain is, how it feels, how it effects and affects us.

The meaning behind the picture I contributed, Trigeminal Neuralgia Strikes, was obvious, even the double meaning of the title: the lightning-like strike of pain and the fact that trigeminal neuralgia strikes out of the blue.

I was very surprised by the response. One commenter felt using red for the pain made it seem “superficial," the picture not indicative of how painful the disorder can be.

But the picture also got my point across. He said it made him want to know more about a condition of which he had been unaware.

"trigeminal neurlagia strikes"

So it was successful. To me.

We often lament how people don't “get” our pain no matter how many times and ways we try to explain it. We know what we are saying. We assume that that is what is being heard.

I drew the picture some time back to denote the pain for both Trigeminal Neuralgia Awareness Day and for Women in Pain Awareness month. It never occurred to me that what I drew was not  what people were seeing. 

So often we say, "They refuse to understand." I explain and explain until I'm blue in the face and they still say, “It's not so bad” or “I had a headache like that once.” 

The one thing I rarely hear, or to be honest even thought, is maybe I am not explaining it in a way they can understand. Instead of getting frustrated or angry, maybe I need to ask, “What exactly is it you don't understand?”

Sometimes we think we are speaking the same language, but the language of pain is often so very person specific. It's like the old break- up line: “It's not you, It's me.”

I regret never talking with my mother about what she had painted. I knew her life had been hard, and that she retained a disability from her bout with polio. I did not want to truly know her sadness and suffering. I now realize her picture spoke, very clearly and with no doubt, of her own pain.

But when it does not speak, like with my picture, it may just be me. And I may need to learn the language of the listener, so what I say is what is being heard.

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.

Why Won't Doctors Come to My State?

By Ellen Lenox Smith, Columnist

The other day at a medical exam, I was asked if I would consider helping to raise awareness about a serious issue we face in Rhode Island: doctors are rarely willing to come practice here.

My doctor’s medical practice wants to hire new physicians, but they have trouble finding a doctor even willing to be interviewed.  Many doctors in the practice are in their 50’s and will be difficult to replace when they retire.

Why is it so difficult to find their replacements?

I looked up an article written by John Kiernan called “2016’s Best & Worst States for Doctors” and began to find some answers.

To my surprise and dismay, Rhode Island is listed as the 50th worse state for opportunity and competition, and it is rated 46th for medical quality.

Overall, Rhode Island was ranked as the 49th worst state for doctors, only beating New York and the District of Columbia.

Learning this, I called the Rhode Island Medical Society to get a better understanding of  why we rank so poorly. I spoke with Steve DeToy, the Director of Government and Public Affairs. He offered to explain what was happening, not only in our state, but around the country.

According to DeToy, about 20 percent of Rhode Island’s population is eligible for Medicare. Reimbursement fees for Medicare are established by a formula and presently are equivalent to those in Massachusetts.

DeToy told me the problem is not Medicare, but the reimbursement rates set by commercial insurers, which are deterring doctors from wanting to practice here. Health plans like Tufts, United, Blue Cross Blue Shield, etc. have for years established very low reimbursement rates and there is no regulatory agency telling them what they should pay a doctor for.

These insurers may be saving costs to keep rates lower, but we are losing the chance for more medical help in Rhode Island. Why would a doctor choose to come here with huge debt from medical school knowing they could go to another state and be paid for the same services at much more reasonable rates?

The only positive aspect I found in this inexcusable and perhaps avoidable mess is that Rhode Island participates in federal and state funded health professional loan program that helps pay the exorbitant costs many doctors face for medical school loans. On average, medical school students end their education about $180,000 in debt.

In return for the loan payments, primary care, dentistry, and mental health professionals make a two year commitment to practice in communities where there is a shortage of physicians. Part-time employment requires a commitment of four years. This year, 24 such awards were given out. Last year, due to financial issues, only 14 were awarded.

Many patients in Rhode Island who live with complicated conditions are having trouble finding a doctor willing to treat them. Doctor shortages are a serious problem, not only here, but in other small and rural states where reimbursement rates are set too low. As doctors reach the age of retirement, imagine what it’s like to have trouble finding a qualified replacement to keep treating your patients.

Who can blame these practitioners? Why would you want to have less reimbursement for the same job that can be done in another state where you can get adequate compensation?

Medical professionals should earn enough to pay off their loans, support their families, and live the lives they deserve.

Where does your state stand? Do you know? We need to write our congressmen and make sure they are focused on this issue and are coming up with reasonable solutions to address this problem.

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.

How Curcumin Helped My Chronic Pain

By Judie Plumley, Guest Columnist

In 2013 I had a spinal fusion, 7 months after I had transvaginal mesh removal and reconstruction surgery.  During the operation, I contracted a severe bacterial infection in my spine called methicillin-resistant Staphylococcus aureus (MRSA). 

To make a long, painful story short, I ended up having 5 more spinal surgeries in the next year.  They did not get rid of the infection until it had liquefied 2 vertebrae and surrounding tissue. It almost killed me. 

There is extensive nerve damage, and my back is filled with rods and screws. 

During the worst of it I was on fentanyl, Dilaudid, Demerol, gabapentin (Neurontin) and oxycodone.  I spent 2015 weaning myself off the narcotics.  I was losing my insurance and I knew if I didn't, I would be in a withdrawal from hell.

I did go to two pain clinics, but just simply refused to be treated like a criminal.  I started exploring other options to deal with my pain.

Judie Plumley's spine

Since my son is a massage therapist, the first thing I started as soon as I was able was to get weekly massages while I healed.  Joseph stretched the forming scar tissue in order to allow me to move.

Next, I started using kratom, a half teaspoon twice a day.  I was amazed by the effect.  It knocked out a considerable amount of pain, but I was still spending 12 to 14 hours in bed each day.

About 2 months ago, my sister told me to try a supplement that combined curcumin – a yellow spice -- with black pepper oil. I bought it from Amazon, $15 for 120 caps. 

I am amazed with the results!  My pain is now bearable.  I can do about twice as much as I could before, and I am spending much less time in bed.

I am now in the process of getting off the gabapentin, but it is much harder than any of the narcotics.  The withdrawal is horrible.  As soon as this devil is off my back, I am done with doctors and hospitals.

curcumin

I refuse to be treated like a drug addict or a criminal.  I believe pain clinics are nothing more than a scam and that drug companies intentionally add things to their drugs to make people addicted. The antidepressants that are taking the place of opiates are even worse! Ever heard of a brain zap?

I swear, they are trying to kill us, or drive us to kill ourselves.  I don't understand why they are attacking people in chronic pain.  It's a terrible way to live.  I am lucky I have my son, a good support system, and have found something that works.  Life is hard enough as it is.

I have kept a journal since 2014.  I plan to write a book about my experience with MRSA.  Unless you’ve had it, you have no idea how dangerous and painful it is.

Judie Tucker Plumley lives in Georgia.

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

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

How to Be a Patient Advocate

By Barby Ingle, Columnist

People in the pain often get ideas about what they can do to help advocate for the pain community, such as a petition drive or letter writing campaign. Some of these ideas are great, but when they try to implement them or get others to, things don’t work out -- there’s little participation, they get discouraged, and that is the end of that.

Over the past 10 years as a patient advocate who is very vocal and seen many ideas come and go, I have learned not to spend too much time doing what I know doesn’t work.

Is this fair to others in the pain community? I think so.

About 7 years ago I wanted to make a difference in the disease community of Reflex Sympathetic Dystrophy (RSD). I wanted to get bills passed to require mandatory education in RSD for providers. It would have to be a state-by-state process, which would take time, money and dedication, with no guaranteed results.

I started in Virginia by reaching out to a state legislator. He met with me through Skype, and then had me come to his office. I learned that anytime you want to mandate anything, it is very difficult to get passed into law. The legislator suggested I work with the Virginia health department. I had multiple meetings with state health officials and managed to get RSD information up on the health department's website, as well as over 10,000 RSD pamphlets printed and spread throughout Virginia. It was amazing. I then set my sights on other states.

We needed to raise funding for the printing of pamphlets for other states. A woman called and said that she saw our request for donations, but before she donated she wanted to make sure that this was not another fly-by-night idea. She was right to ask, although I was slightly offended that my hard work, volunteer time and dedication would be called into question.

In the end, we couldn’t raise the funding needed to get this accomplished. I was very sad, but had to admit my great intentions could not come to fruition because I was not able to raise the support or funding it would take. People loved the idea, but didn’t want to help physically or financially.

I have grown very leery of petition drives for similar reasons. The chances of a petition changing something major is almost zero. Even when over 80 pain groups came together this past year to help guide and make changes to the CDC opioid prescribing guidelines, it was not enough.

We did get one pain patient representative added to an advisory "stakeholder" group, which gave recommendations to the CDC's "Core Expert Group" committee. But that committee already had in mind what they were going to do, and unless we got someone on the Core Expert Group, we were not going to change their minds or the guidelines. Thousands of people in the pain community also wrote letters and signed petitions to the CDC. It didn’t make a difference.

What can we do to change this?

There has to be a way to harness the energy and passion in the pain community that is effective, efficient, and useful. Otherwise the pain community will continually be run over and ignored.

I believe we have to get into legislative offices. Today, this week, or this month, make an appointment with your state or local representative -- especially if they are on a legislative health committee. Go see them in person. Tell them your story. Tell them why proper and timely access to pain care is badly needed. How you are counting on them to support future legislation that is supportive of pain patients.

Tell them that you are paying attention, not just when there is a bill up for a vote, but every day -- because you are in pain and have special needs every day. Paint your story for your legislator so they will remember you when they are in the backrooms making deals before committee hearings.  Make them remember your face, your name and your story when they are deciding what bill to pass and how it will affect you.

Put a face to your disease and a face to chronic pain. As a 501 (c) (3) non-profit leader, I cannot say you should vote for this legislator or against that one. I approach legislative needs with each legislator not caring what aisle or political party they belong to. All legislators can help us because they are all in a position to pass laws.

Realize that everyone has an agenda. Which is most noble? The pain patient trying to do something for themselves so they can have more productive lives; insurance companies that lower the cost of healthcare; drug and medical device makers that are investing their time and money into treatments; or the providers we rely on to gain access to those treatments?

Become a person that the legislator knows, become the face in their thoughts when pain care comes up for legislation. Put a human in the process, so that the legislator sees that this affects people they know.

Patient advocacy groups have formed coalitions, such as the Consumer Pain Advocacy Task Force. These coalitions are planning and implementing strategies, and working together to make change as well. Professionalism and diplomacy are keys to their work and they need to be done by all in the pain community, whether you belong to an advocacy group or if you are working on your own.

Advocating with aggressive anger to our legislators, pharmacy boards, CDC, DEA, FDA, etc. allows our emotions take over and it is setting us all back. Flooding an office with angry letters, emails and phone calls with non-sustainable facts does not work.

We need to have in-person visits before the legislation even comes up. This is the "off season" for most legislators. Reaching out now, before the legislative sessions start again, for a face-to-face meeting has a time -- and it is now. 

We also need to target our own representatives. Having people from New Mexico calling legislators in West Virginia is probably not going to change any minds in West Virginia. In addition, making comments that are unsupported by facts, such as claiming that more patients are overdosing or turning to the streets for relief, are not yet proven. They can be debunked and then we are seen as catastrophizers.

Please know actual facts and be able to site statistics with solid sources when you advocate.

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 (iPain). 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.

What Next for Arachnoiditis Patients?

By Pat Anson, Editor

A pioneering two-day conference on arachnoiditis has ended in Helena, Montana with dozens of  patients armed with new information about the chronic and disabling spinal disease.

Many are also left wondering who will treat them and how to pay for it.

"We practitioners need your help and you need our help," says Forest Tennant, MD, who is the world's foremost authority on arachnoiditis, a progressive and incurable inflammation of the spinal cord that leaves most people who have it with severe chronic pain.

Tennant, who treats about 60 arachnoiditis patients from around the country at his pain clinic in West Covina, California, has developed a complex and unique therapy for arachnoiditis that combines pain medication, anti-inflammatory drugs, vitamins and hormones. Once bedridden or using walkers, several of his patients were healthy enough to make the long trip to Montana to hear him speak.

"I would not dare prescribe these drugs if I didn't have control of the opioids and everything else you're doing. These things are hazardous in the hands of the inexperienced," he warned.

At age 75, Tennant knows it is time for other doctors to learn and start practicing his treatment methods.  But he and his patients face a dilemma. Most pain management doctors and specialists already have a full patient load and Tennant himself is not taking new patients.

"Every good specialist in this country is booked. They're not available and they don't know anything about this anyway," says Tennant.

"Pain management really is its own specialty now and if they're not in that field, they're not going to help you do this. These hormones are going to have to be done by the same doctor that manages your pain and manages your inflammation. It's going to have to be done by the same practitioner."   

If attendance at the conference is any indication, finding doctors willing to learn and practice Tennant's treatment protocol will be difficult. Invitations went out to over two thousand practitioners in Montana, but only a handful showed up.  No one from the Montana Medical Association or the Montana Board of Medical Examiners attended.

"The problem with this protocol in the conventional medical world is that this crosses disciplines. We're talking rheumatologists, we're talking endocrinologists, and that's where conventional medicine gets stuck," says Christine White, ND, a naturopathic physician from Missoula who attended the conference. "Conventional medicine has evolved into this realm where the general practitioner doesn't do a lot. They refer out (to specialists) and what we need to do as physicians is get general practitioners willing to take on more rings of this problem."

The problem may be a bigger one that anyone imagines. Tennant estimates as many as one million Americans may suffer from arachnoiditis, many of them misdiagnosed with “failed back syndrome” or other spinal problems.

Most people get the disease when the arachnoid membrane that surrounds their spinal cord is damaged during surgery or punctured by a needle during an epidural steroid injection. Inflammation sets in and can spiral out of control, forming scar tissue that cause spinal nerves to stick together. That leads to adhesive arachnoiditis and neurological problems, which can cause burning or stinging pain that can be felt from head to toe.

Insurance Won't Pay the Bills

Besides getting treatment, another common problem faced by arachnoiditis sufferers is their insurance coverage.

"The reimbursement structure is part of the problem and the reason why I ended up with adhesive arachnoiditis," says Terri Anderson, who as a federal employee was covered by Blue Cross Blue Shield when she went to get treatment for back pain.

"I think the doctors and surgeons looked at my Blue Cross Blue Shield and they wanted to do epidural steroid injections and spinal surgery. Blue Cross had good coverage for all these invasive procedures, so I think they have some culpability," she said

Like many arachnoiditis patients, Anderson is not reimbursed for the unusual drugs and hormone therapy that she gets "off label" from Dr. Tennant or for the cost of traveling to see him in California. Her out of pocket expenses add up to about $200 a month.

"My co-pays for my medications are about $500 a month," says Nancy Marr of Los Angeles, who is insured through Medicare and a supplemental policy with AARP. Marr doesn't have to travel far to see Tennant, but she does have to pay out-of-pocket for his services.

"To participate in this kind of a program at this point in time would end up costing people a tremendous amount of out-of-pocket costs," she says.

While all of this is discouraging, the mood was anything but gloomy at the conference. For many, including this reporter, it was their first chance to meet and interact with people they've been communicating with online for years. That sense of community and a common goal stirs optimism. And so does the knowledge that the conference may have laid the groundwork for a treatment that could ultimately benefit thousands of people who are suffering.