How to Survive the Holidays Without Burning Out

By Elizabeth Katherine, Guest Columnist

My husband and I are very social and we love just about any reason to get the people we love together in a room, and the holiday season is great for that. But it can also be really hectic.

The thing I hear more than anything else this time of year is “I have so much to do.” As a chronic pain sufferer, I know daily life can be overwhelming, and when you throw in all the extras of the holiday season it can get real sticky real quick.

As a mom of three kids and an exceptionally busy husband, I often take on the household responsibilities as well as the additional tasks of holiday prep.

When my pain got to be an all-day everyday thing, I was heartbroken at the thought that these kinds of events wouldn’t be able to happen anymore, or that I wouldn’t be able to produce the kind of holiday that my kids were used to and I was used to.

Pelvic Congestion Syndrome causes me to have constant pain in my pelvis as well as my low back that gets worse the longer I am upright. As I have gotten to know my body and my limitations, I have been able to tailor the way I navigate the holiday season without burning myself out too much. I’d like to share some of my ideas with you all.  

The biggest piece of advice I can give you is to start with lists. Lists are the best thing that ever happened to those of us with brain fog and fatigue. Make a list of all the things you’d like to have done in order to prepare for the holidays. Create gift lists that layout who you’re buying for, and what’d you like to get them.

You can also avoid having to run out for that extra carton of eggs by making a list of the things you’d like to make for holiday meals and the ingredients you will need to make them.

Once you’ve laid out the what, it’s time to plan out the when. This is huge for us Spoonies because we have limited resources when it comes to getting things done. Sit down with your calendar and look at when you have free time. Schedule time to do your baking, household decorating, any parties you’d like to attend, and of course, time for gifts.

Make sure to schedule your rest time too. If you schedule in a 1-2 hour shopping trip, be sure that you also schedule yourself for some time on the couch or a movie afterwards.

Gifts are one of the biggest time sucks this time of year for anyone, but for those of us in the pain community it’s even worse because it involves so much shopping. If you haven’t yet, become familiar with online shopping, consider a membership to websites that offer discounts and free shipping such as Amazon Prime or Overstock.com. Utilizing this will cut down on the amount of time you need to spend out, plus, it’s a nice way to feel productive when you’re stuck on the couch.

If you enjoy the activity of shopping like I do, make sure you schedule a few different trips for that as well. Instead of running from one store to the next, map your plan out ahead of time. Make a list of the things you know you can get at each store you want to go to so you don’t waste your energy bouncing all around for one or two items. Consider pre-shopping online to see what colors and sizes the stores you are going to have in stock so you’re not disappointed when you get there.

Once you’ve got your gifts, you can use some of your resting time to wrap them. If you need help with this project, make it a social activity and invite a friend over to help with tape or scissors. This is also a good way to get any holiday crafting or homemade gifts done. Just don’t invite the person you’re making the gifts for!

Another way to get your to-do list done for the holidays is to delegate like a champ. Ask your spouse to move the decorations out from storage, and put the kids to work decorating the tree. You can curl up on your couch and watch it all while sipping hot cocoa and still feel involved. Or, if you prefer to do it all yourself, break it up into small bursts so that you don’t get too drained doing it all in one sitting.

My last piece of advice is to remember the reason for the season. It’s easy to get caught up in the craziness of it all, and even more so to look at all the things you can no longer do and feel frustrated.

At the core of it all, the holidays are about spending time with loved ones, and the intentions behind your choices are what matter the most. The people who love you aren’t going to care if you didn’t bring fruit cake to the party, even though it was your turn. The people you spend your time with during the holidays are the people who love you, chronic illness and all.

Elizabeth Katherine lives in Minnesota with her family. She writes about Pelvic Pain Syndrome and other topics on her blog, These Next 6 Months.

Elizabeth also enjoys the Facebook support group Spoonies for Life.

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.

Decline in Teen Opioid Abuse Continues

By Pat Anson, Editor

An annual survey that tracks teenage drug abuse continues to show a decline in the misuse of prescription opioid pain relievers, as well as heroin, alcohol, cigarettes, amphetamines and other substances.

The University of Michigan's Monitoring the Future Study (MTF) has tracked drug abuse among 8th, 10th, and 12th graders since 1975. This year’s survey included nearly 45,000 students at 382 public and private schools in the United States.

The MTF survey tracked the steady rise in teenage abuse of prescription opioids in the 1990's, before the trend reversed itself in the last decade. For the fifth year in a row, the survey found there was a significant decline in the misuse of opioids by teens (reported in the survey as “Narcotics Other Than Heroin”).

About 5% of 12th graders reported using an opioid pain medication in the last year, including 4.4% who used Vicodin and 3.7% who used OxyContin.

The number of teens reporting that prescription opioids were “fairly easy” or “very easy” to get also continues to drop.

Most teens abusing prescription opioids reported getting them from friends or family members. About one-third reported getting them from their own prescriptions.

"The recent declines in the abuse of prescription pain medicines among teens are encouraging. The Partnership has been working for quite some time through both our Above the Influence program and the Medicine Abuse Project to help educate teens, parents and communities about the risks of medicine abuse and we are glad to see continued progress," said Marcia Lee Taylor, President and CEO of the Partnership for Drug-Free Kids.

“While today's news about substance use among teens is mostly positive, we cannot let that take our focus off of the prescription drug and heroin crisis among other age groups.”

Despite widespread media reports about the so-called heroin “epidemic” in adults – heroin use among teens is at its lowest level since the MTF survey began. Past year use of heroin fell to 0.5% of 12th graders, an all-time low.

Use of several other illicit drugs – including MDMA (known as Ecstasy or Molly), amphetamines and synthetic marijuana – also showed a noted decline in this year's data. Use of alcohol and cigarettes reached their lowest points since the study began.

Marijuana, the most widely used illicit drug, did not show any significant change. After rising for several years, teenage marijuana use has leveled out since 2010, but still remains stubbornly high. In 2015, 12% of 8th ­graders, 25% of 10th­ graders and 35% of 12th­ graders reported using marijuana at least once in the past year. For the first time ever, daily marijuana use exceeds daily tobacco use among 12th graders.

"We are heartened to see that most illicit drug use is not increasing, non-medical use of prescription opioids is decreasing, and there is improvement in alcohol and cigarette use rates," said Nora D. Volkow, M.D., director of the National Institute of Drug Abuse, which funded the MTF survey.

"However, continued areas of concern are the high rate of daily marijuana smoking seen among high school students, because of marijuana’s potential deleterious effects on the developing brains of teenagers, and the high rates of overall tobacco products and nicotine containing e-cigarettes usage."

One growing area of concern is the abuse of Adderall and other prescription amphetamines, which are typically used to treat Attention Deficit Disorder (ADHD) but are widely perceived as a study aid.  About 7.5% of 12th graders used those drugs in the past year.

Wear, Tear & Care: The ActiPatch

By Jennifer Kain Kilgore, Columnist

Loyal readers, I have returned.

It’s been a tumultuous month of bad days and flares, so while I was absent from my writing duties, I was trying out a hodgepodge of products designed to offer pain relief.

Naturally, none of them worked. Let’s discuss.

A while ago it was suggested that I try the ActiPatch. I was originally introduced to this new form of pain product by Lil’ Bub, the celebrity cat.

I should probably explain that.

Lil’ Bub, full name Lillian Bubbles, is a perma-kitten, meaning that she will retain her kitten-like characteristics for her entire lifespan.

She also has an extreme case of dwarfism and a rare bone condition called osteopetrosis (the only cat in recorded history to have it), which causes her bones to become incredibly dense as she grows older. This causes pain and difficulty when she tries to go from Point A to Point B.

Her person, called the Dude (like Jeff Bridges in “The Big Lebowski”), discovered the Assisi Loop, which is designed to treat pain and inflammation in pets. The device uses targeted PEMF technology (or pulsed electromagnetic fields) to induce healing within the area of the plastic “loop.”

IMAGE COURTESY LILBUB.COM

Before starting her treatment, Lil’ Bub was becoming stiffer and less mobile.  But two years of therapy later, she's running, jumping, and acting like any other cat.

Fast forward to the present day and the explanation as to why I am talking about a cat. ActiPatch is the version of this for humans. I received a letter and package from the president of BioElectronics that contained a thick wad of research and loops for my back, knees, and muscles/joints. I tossed the ones aimed for knees to my husband and kept the rest for myself. Because I’m selfish.

The ActiPatch loops manipulate the body by means of electrical signals, much like TENS devices. The field created within the loop “induces an electrical field in the target tissue,” as  Andrew Whelan stated in his letter to me. These fields affect nerve fibers and cellular function by increasing blood flow and decreasing inflammation, thereby reducing pain.

Additionally, as Mr. Whelan said, the field is “periodically amplified by the background energy within the target tissue, a process called stochastic resonance.” This is when unpredictable fluctuations, or “random energy,” cause an increase in the signal transmission.

During their “Try and Tell” rollout campaign in the U.K. and Ireland, more than 5,000 responded to a survey of trial devices that were sent to interested individuals for only the cost of postage. The company claims there was a “consistent response” of 52 percent reporting sustained pain relief.

Back in my world, I encountered a few problems when trying out the ActiPatch. My pain, as I have mentioned before, is both widespread and diffuse. There are specific areas of genesis, but the pain is by no means contained to just my spine. I have injuries to my cervical, thoracic, and lumbar spine, but the sections with the “loudest” pain tend to be my shoulders, the sides of my neck, my ribs, and my low back. These loops, which are only about the size of a small plate, could not possibly reach all these spots. I’d look like a rubber band ball.

During my trial run, I decided to place the loops both in the “genesis areas” (IE, over my spine directly) and on my shoulder blades. Getting the loop to fit over the curve of my trapezius muscles was difficult. The loops came with a box of Band-Aid-like stickers to hold the loops in place, and I made quite the mess attaching all of them to my skin. Once the loops are placed, however, you simply press a button on the little magnet, a green light comes on, and off you go.

I pulled my shirt on over everything and encountered another issue: the green lights of the loop batteries showed through my shirt, as did the loops themselves. I looked like an undercover informant with poorly-hidden wires. The mafia would surely figure me for a rat. The solution: many layers!

The day I chose for my test run was a normal weekend day. I hadn’t planned anything strenuous and no activities were going to be out of the ordinary. I didn’t wear my Quell, and I also left off the roll-on Stopain that I usually slather on every day. I wanted a day where I could control the variables in order to test the efficacy of the device. My husband and I ran our weekend errands and then decided to take a short walk out in nature. 

My first observation: I did not feel anything from the devices themselves. Others who have used the ActiPatch have told me they felt the sensation of heat within the area of the loops. I didn’t feel anything. I have decreased sensitivity in many areas of my body anyway, so that was not surprising. Additionally, the ActiPatch website states that there will be no sensations.

My second observation: The areas outside of the loops hurt more than normal. I don’t know how good the devices are at affecting areas other than what is in the confine of the loop. The space within those circles felt like a black hole, which is better than pain. While something was definitely going on in the loops -- when I took them off at the end of the day, those areas were red, appearing almost sunburned -- I don’t feel like it helped my widespread pain to any significant degree.

My third observation: I ended up crashing far earlier than normal. By early afternoon I was in my recliner and taking heavier medication.

My hypothesis: The ActiPatch device is probably great for somebody with an injury that is clearly restricted to a certain area. For instance, my husband hurt his knee while running. The loop would be able to focus on that since the pain does not radiate out all over the body.

For somebody like me (an anthropomorphic bruised banana), the loops are far too small. I would need a hula-hoop-sized device in order to make a dent in my daily pain.

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

You can read more about J.W. on her blog, Wear, Tear, & Care.  

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

New Blood Test Predicts Early Rheumatoid Arthritis Risk

By Pat Anson, Editor

British researchers are developing a new blood test that could predict the likelihood of developing rheumatoid arthritis (RA) up to 16 years before the onset of symptoms. Such a test would substantially increase the early detection of RA and make treatment more effective.

Rheumatoid arthritis is a chronic autoimmune disease in which the body’s own defenses attack joint tissues, causing pain, inflammation and bone erosion.

Researchers at the Kennedy Institute of Rheumatology at Oxford University developed a blood test that looks for antibodies in a protein called citrullinated tenascin-C (cTNC), which is often found in high levels in the joints of people with RA.  

In a study of over 2,000 patients, the blood test diagnosed RA in about 50% of cases. The test also had a very low rate of false positives.

"What is particularly exciting is that when we looked at samples taken from people before their arthritis began, we could see these antibodies to cTNC up to 16 years before the disease occurred – on average the antibodies could be found seven years before the disease appeared,” said Professor Kim Midwood of the Kennedy Institute.

"This discovery therefore gives us an additional test that can be used to increase the accuracy of the CCP assay and that can predict rheumatoid arthritis, enabling us to monitor people and spot the disease early. This early detection is key because early treatment is more effective."

Early RA treatment focuses on suppressing the immune system to reduce inflammation and slow progression of the disease.

"Early diagnosis is key, with research showing that there's often a narrow window of opportunity following the onset of symptoms for effective diagnosis and control of disease through treatment. Furthermore, current tests for rheumatoid arthritis are limited in their ability to diagnose disease in different patients,” said Stephen Simpson, director of research at Arthritis Research UK, which funded the study.

"This could have great potential to help patients with rheumatoid arthritis get the right treatment early to keep this painful and debilitating condition under control."

A similar diagnostic blood test for RA is already on the market in the United States, Canada, Europe, Japan and Australia. The JOINTstat test looks for another protein called 14-3-3η. A recent study of 149 RA patients in Japan found that serum 14-3-3η levels can predict disease severity and clinical outcomes. Drugs that reduce 14--3-3η levels can delay the onset and severity of RA, and increase the chances of remission.

About 1.5 million Americans and 1% of adults worldwide suffer from RA.

CDC Relying on Same Experts for Opioid Guidelines

By Pat Anson, Editor

The Centers for Disease Control and Prevention (CDC) will continue to rely on the same panel of experts to advise the agency about its opioid prescribing guidelines – even though some of the experts are allegedly biased and have conflicts of interest.

The CDC announced last week that it would review and delay implementing the controversial guidelines, after they drew widespread criticism from pain patients, advocacy groups, and medical societies. On Monday the agency also began accepting new public comments on the guidelines, which discourage primary care physicians from prescribing opioids for chronic pain.

The review of the guidelines will be conducted by the Board of Scientific Counselors (BSC) for the CDC’s National Center for Injury Prevention and Control. The CDC is developing the guidelines to combat what has been called an "epidemic" of prescription drug abuse, addiction and overdoses. As many as 11 million Americans use opioids for long-term chronic pain.

“We will be asking the BSC, the members of which represent expertise along the spectrum of injury and violence issue areas, to approve formation of a workgroup to review the draft guideline and comments received on the guideline, and present recommendations about the guideline to the BSC,” said Leslie Dorigo, a CDC spokesperson.

“Our intent is for the workgroup to be comprised of members of the original Core Expert Group, members of the BSC, and individuals who represent the perspectives of patients living with chronic pain and who have additional pain medicine expertise.”

The “Core Expert Group” has 17 members and is composed primarily of public health researchers and state regulators. At least two of its members have drawn the ire of critics who say they shouldn’t serve on the panel.

Jane Ballantyne, MD, and Gary Franklin, MD, are the President and Vice-President, respectively, of Physicians for Responsible Opioid Prescribing (PROP), an advocacy group funded by Phoenix House, which runs a chain of addiction treatment centers. Three other board members of PROP will also continue to advise the CDC in their roles as stakeholders and peer reviewers, according to Dorigo.

“For the life of me, I can’t understand why CDC insists on retaining such obvious bias on their panel, as it flies in the face of their scientific integrity,” said Jeffrey Fudin, a pharmacist and founder of Professionals for Rational Opioid Monitoring & Pharmacotherapy (PROMPT).

“I find it hard to believe that CDC can’t find a single qualified physician to speak against opioids that is free from potential conflict.  With all that has been drudged up in the professional literature and lay press regarding potential or postulated physician conflicts, CDC’s behavior is nothing less than reverse discrimination.”

Ballantyne and Franklin, who have been vocal critics of opioid prescribing, played key roles in the development of opioid regulations in Washington State, which has some of the toughest prescribing laws in the nation.

dr. jane ballantyne

Ballantyne recently come under fire for co-authoring an article in the New England Journal of Medicine that said reducing pain intensity should not be the goal of doctors that treat chronic pain. That caused a prominent pain physician to call on Ballantyne to resign or be fired from her academic position at the University of Washington School of Medicine.

“To suggest that physicians should no longer treat pain intensity and let patients suffer goes beyond any sort of decency or concern for humanity,” said Forest Tennant, MD, who has treated pain patients for over 40 years.

Ballantyne’s ties to the pharmaceutical industry have also drawn attention. She has served as a paid consultant to Cohen Milstein Sellers & Toll, a law firm that specializes in antitrust litigation, including lawsuits against pharmaceutical companies over their marketing of opioids.

“I do have difficulty with someone like Ms. Ballantyne in particular because, quite apart from PROP, she appears to have a very strong conflict of interest and is on the payroll of plaintiff’s attorneys who have a lot of money to be made by suing manufacturers,” said Richard Samp, chief counsel for the pro-business Washington Legal Foundation, which has threatened to sue the CDC over its alleged violations of a federal open meetings law while drafting the guidelines.

“They have a strong interest in making sure that the CDC is critical of current prescribing practices, because that would strengthen their current lawsuits. For that reason, I can’t see how somebody who is on the payroll of plaintiff’s law firms is an appropriate person to be on the committee,” Samp told Pain News Network.  

Ballanytne could not be reached for comment.

“CDC takes conflict of interest seriously, and worked to eliminate or minimize sources of bias of the experts involved in the guideline development and peer review,” said the CDC’s Dorigo. “Our Core Expert Group was composed of a diverse group of subject matter experts—with substantial knowledge on several aspects of opioid prescribing. The group includes primary care professional society representatives, state agency representatives, an expert in guideline development methodology, and other subject experts.”

Dorigo said the CDC plans to add pain patients and pain management physicians to the new workgroup, but had not determined how many. The agency will hold a public conference call on January 7th to get input from the public on the composition of the panel. The workgroup will present its recommendations to the BSC in a public hearing at an undetermined date.

The Washington Legal Foundation’s chief counsel called that a “step in the right direction,” but emphasized that any deliberations of the workgroup need to be held publicly or it would be a violation of federal law. The Core Expert Group never met publicly.

“The problem was that this group met in secret and the materials submitted to that group were not made publicly available and the deliberations of that group and the materials they produced were never made public,” Samp said.

Fudin believes the CDC needs to start from scratch and appoint a completely new set of experts to advise it.

"In order to regain whatever shred of credibility CDC has left with pain clinicians, a new board should consist of all new members and include board certified pain clinicians that have active current practices with a focus on pain therapeutics in non-cancer pain.  In addition, it requires experts in public health, a psychiatrist, psychologist, and legal counsel with expertise in pain, plus matched expertise in addiction medicine,” Fudin said.

“We are happy to see that the CDC has asked its Board of Scientific Counselors to impanel a committee including additional members, which it should have done in the beginning,” said Bob Twillman, Executive Director of the American Academy of Pain Management.

“We hope the new members will be representative of the pain community, including both clinicians and people with pain, and that their contributions to the committee process will be weighed equally with the opinions of the existing group. We’re a little concerned because all of this is taking place in yet another opaque process, but we have little choice but to trust the CDC to get it right this time.”

The CDC’s public comment period on the guidelines continues until January 13th. You can make a comment by clicking here. 

The proposed prescribing guidelines and the reasoning behind them can be found in a 56-page report you can see by clicking here.

5 Lessons About Finding a ‘New Normal’

By Pat Akerberg, Columnist

Once chronic pain and/or illness invade your life, any sense of normal that you once knew is shattered.

“Normal” implies that there’s some accepted standard or pattern that equals a widely adopted way of living or being.  It’s a consensus reality considered culturally acceptable or reliable.

Good health is one often taken-for-granted aspect of normal.  But what if your medical circumstances become anything but normal overnight? When that happened to me, I resembled a nomad who lost her way. I set out on a search for my next acceptable, reliable state.      

Feeling suddenly disenfranchised, without hope and alone, I longed for where I might fit again.  No wonder it was an appealing elixir to read books and articles that suggested a “new normal,” a reliable replacement for my previous one, could be found.   

How many of us have spent untold energy (that we pay for later) trying to find, construct, and mimic something resembling another version of normal when our lives fell apart?

It took me years, a lot of effort, and self doubt before I finally realized that the concept of “new normal” didn’t apply for me. 

After losing my health, a hazy cloud of guilt and embarrassment lingered over my perceived failure to meet others and my own expectations of normal. I was already questioning how a neurological disorder (trigeminal neuralgia) could run a swath of career and personal destruction through the middle of my life in record time.    

Family and friends kept slowly nudging me to get to a more predictable state.  Because I looked okay, they couldn’t appreciate my inability to keep plans on any given day.  Or understand why a multitude of doctor appointments, medications, or brain surgery didn’t make me “get better.”

Unless you live with a chronic illness or debilitating pain, it’s hard to fathom that they trump plans at will. 

Why couldn’t I find the place that the books/articles talked about?

Because pain has a life of its own that dictates yours despite your good intentions.

I finally let go of the unrealistic expectations swirling around me, realizing that constant change laughs in the face of pat answers that pose to corral it!

The kind of life altering changes that happened when I became medically compromised explain why chasing a “new normal” isn’t the journey its’ cracked up to be.

We know that change is a process that involves opportunity and stress (crisis) – even if the change involved is chosen, like changing jobs, buying a new house, changing a hairstyle, or dieting.  These kinds of changes are happening in your life and don’t really alter your life as a whole.  They are small, easy to digest changes.

Then there are the kinds of unfortunate changes that can happen to your life that carry more gravity.  They alter your life altogether.  Some can be temporary, like a divorce or job loss. Others, like losing a loved one, physical impairments, disabilities, or scary medical diagnoses that involve painful, progressive, or rare disorders transform your life overnight.

The very option of fitting into “normality” or consensus reality is taken away when those happen, despite our best efforts.  That’s a bell that rang true for me.

Sometimes ideas about finding a reliable substitute for normal can be motivational, if they’re realistic. But there are other times when expectations can set us out on a journey that disappoints if we’re not careful.  Elusive expectations can carry the potential to set you up for an emotional roller coaster ride.

Just because someone wrote about a concept doesn’t make it applicable or possible for all.  In some cases, expecting to find some steady state that’s reliable or trustworthy enough to call your “new normal” isn’t realistic.

If your condition is anything like mine, one that is progressive and creates other complications, continuous functional losses, or involves treatments that carry further risk, chasing some steady state becomes counterproductive.

What’s realistic instead is recognizing the state of constant change before you.  It’s an overwhelming kind of chaos. That means what’s predictable for me now is that my pain decides everything, not me.

I came to realize that the best way forward for me was to stop expecting myself to find and conform to the self help version of a “new normal” as the answer to feeling displaced. 

Here are five lessons I’ve learned about chasing normal and acceptance:

1)  When your circumstances are ever changing, your responses will too.  It’s all situational.

2)  Changes that happen to our lives present much tougher challenges, such as coming to grips with irreplaceable   losses. 

3)  Letting go of unrealistic expectations can be freeing when the circumstances impacting your health are constantly progressing or shifting.

4)  A "new normal" needs to to match the realities of living with chronic pain/illness.  Change is the constant, predictable steady state.

5) Chasing normal means going beyond the touted answers that we strive to pursue (equanimity, acceptance, letting go, etc.) and redefining them to fit our fluid situations. 

That’s a realistic journey that can deliver.

I know now that expecting my condition to fit into a predictable state won’t help me. Try as I might, chasing some concept of normal everyday while trying to fit in is truly out of my control, just like the weather.

Yet knowing that the weather always changes is something that can be counted on. And that’s a tried and true pattern that I can fit into.   That’s acceptance.

Pat Akerberg suffers from trigeminal neuralgia. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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.

CDC Made Few Changes in Opioid Guidelines

By Pat Anson, Editor

The Centers for Disease Control Prevention (CDC) has made few changes in its draft guidelines for opioid prescribing, three months after they were widely criticized by pain patients and healthcare providers.

The agency still maintains that “non-pharmacological therapy” and non-opioid pain relievers are the “preferred” treatments for chronic pain, while admitting there is little evidence to support many of its recommendations. The guidelines also fail to address other issues, such as the lack of insurance coverage for many of the treatments the CDC advocates.

The proposed guidelines for primary care physicians were publicly released for the first time today as the CDC opened a 30-day public comment period on them. You can make a comment by clicking here.

The dozen guidelines can be found in a 56-page report, along with the reasoning behind them. You can see the report by clicking here.

“This guideline provides recommendations that are based on the best available evidence that was interpreted and informed by expert opinion. The clinical scientific evidence informing the recommendations is low in quality,” the report states.

“To inform future guideline development, more research is necessary to fill in critical evidence gaps. The evidence reviews forming the basis of this guideline clearly illustrate that there is much yet to be learned about the effectiveness, safety, and economic efficiency of long-term opioid therapy.”

The CDC was roundly criticized for the way it prepared and handled the initial release of the guidelines in September to a select online audience.  The agency never made the guidelines available on its website or in any public form outside of the webinar, and only a 48-hour public comment period was allowed afterwards. The CDC also came under fire for secretly consulting with “experts” that included special interest groups and addiction treatment specialists, but few pain patients or pain physicians.

After getting feedback from critics, the CDC said it would make changes in its recommendations, but only a few changes can be found in the dozen guidelines released today:

1. Nonpharmacologic therapy and nonopioid pharmacologic therapy are preferred for chronic pain. Providers should only consider adding opioid therapy if expected benefits for both pain and function are anticipated to outweigh risks to the patient.

2. Before starting opioid therapy for chronic pain, providers should establish treatment goals with all patients, including realistic goals for pain and function. Providers should not initiate opioid therapy without consideration of how therapy will be discontinued if unsuccessful. Providers should continue opioid therapy only if there is clinically meaningful improvement in pain and function that outweighs risks to patient safety.  

3. Before starting and periodically during opioid therapy, providers should discuss with patients known risks and realistic benefits of opioid therapy and patient and provider responsibilities for managing therapy.

4. When starting opioid therapy for chronic pain, providers should prescribe immediate-release opioids instead of extended-release/long-acting (ER/LA) opioids.

5. When opioids are started, providers should prescribe the lowest effective dosage. Providers should use caution when prescribing opioids at any dosage, should implement additional precautions when increasing dosage to ≥50 morphine milligram equivalents (MME)/day, and should generally avoid increasing dosage to ≥90 MME/ day

6. Long-term opioid use often begins with treatment of acute pain. When opioids are used for acute pain, providers should prescribe the lowest effective dose of immediate-release opioids and should prescribe no greater quantity than needed for the expected duration of pain severe enough to require opioids. Three or fewer days usually will be sufficient for most nontraumatic pain not related to major surgery.

7. Providers should evaluate benefits and harms with patients within 1 to 4 weeks of starting opioid therapy for chronic pain or of dose escalation. Providers should evaluate benefits and harms of continued therapy with patients every 3 months or more frequently. If benefits do not outweigh harms of continued opioid therapy, providers should work with patients to reduce opioid dosage and to discontinue opioids.

8. Before starting and periodically during continuation of opioid therapy, providers should evaluate risk factors for opioid-related harms. Providers should incorporate into the management plan strategies to mitigate risk, including considering offering naloxone when factors that increase risk for opioid overdose, such as history of overdose, history of substance use disorder, or higher opioid dosages (≥50 MME), are present.

9. Providers should review the patient’s history of controlled substance prescriptions using state prescription drug monitoring program (PDMP) data to determine whether the patient is receiving high opioid dosages or dangerous combinations that put him or her at high risk for overdose. Providers should review PDMP data when starting opioid therapy for chronic pain and periodically during opioid therapy for chronic pain, ranging from every prescription to every 3 months.

10. When prescribing opioids for chronic pain, providers should use urine drug testing before starting opioid therapy and consider urine drug testing at least annually to assess for prescribed medications as well as other controlled prescription drugs and illicit drugs.

11. Providers should avoid prescribing opioid pain medication for patients receiving benzodiazepines whenever possible.

12. Providers should offer or arrange evidence-based treatment (usually medication-assisted treatment with buprenorphine or methadone in combination with behavioral therapies) for patients with opioid use disorder.

Most of the dozen guidelines are strongly recommended by the CDC, even though the evidence used to support them was considered “limited” or there was “very limited confidence in the effect” of the recommendations.

Changes in Draft Guidelines

Some changes were made in guideline #5, which warns physicians to avoid giving patients high doses of opioids. The new guideline suggests that patients already taking high dosages “should be offered the opportunity to re-evaluate their continued use of opioids at high doses,” instead of having their medication abruptly changed to a lower dose.

However, no mention is made of a CYP450 genetic test, which can determine if a patient may need high doses of opioids.

“The CYP450 omission is disturbing since 20 percent of the population has some defect. How can you have a prescribing policy without CYP450 testing?” asked Gary Snook, a Montana man who needs extremely high doses of opioids to relieve pain from adhesive arachnoiditis. “It makes me wonder, are these doctors really qualified to put forth this draft that will have such an impact on so many that live in severe 24/7 pain? I think not!”

One significant change, in guideline #10, acknowledges that the results of urine drug tests are often wrong or misinterpreted. It recommends drug testing before opioid therapy begins and then annually, but random drug testing is discouraged. The guideline also recommends that providers not test for substances such as marijuana, which may not affect the efficacy of pain management.  

If there are “unexpected results” from a urine drug test, the guideline says patients should not be terminated from a doctor’s practice, but should be counseled or offered treatment for substance abuse.

Pain Patients Urged to Comment

“I feel it's critical that members of the pain community, or people whose loved ones suffer from chronic pain, to take this rare second chance to refer to each of the guidelines and make their feelings known,” said Kim Miller, a pain patient and advocate..

“I feel it's important to keep your feelings out of comments to official government entities. Professionals are more receptive to calm remarks.  There's no need to be inflammatory; other agencies, law firms, and numerous medical providers have already expressed their disappointment and disapproval of the previous draft guidelines.  At this point, sticking to the facts is all that's necessary.”

The CDC is emphasizing the revised guidelines are voluntary and “intended to improve communication” between doctors and their patients.

Debra Houry, MD, the CDC official who oversaw development of the guidelines, even put out a Tweet, saying, “Patients & providers should decide together how to best treat long-term chronic pain.”

But critics say the guidelines, when adopted, could quickly become a standard of practice for state medical boards and professional healthcare societies, giving physicians little choice but to comply with them.

“These ‘guidelines’ are not looked at merely as suggestions,” Miller said. “When the CDC suggests there's no need for concern, after all these are only guidelines, it couldn't be further from the truth.  The pain community must be sure to give these guidelines very serious consideration, your medical providers will be.”

After the public comment period ends, the CDC says the guidelines will be reviewed by a scientific advisory group, which will then appoint another working group to refine the guidelines further.  The agency has not released a timetable or said if outside consultants who helped draft the initial guidelines will still be part of the process.

The CDC was criticized for consulting with five board members of Physicians for Responsible Opioid Prescribing (PROP), an advocacy group funded by Phoenix House, which runs a chain of addiction treatment centers. Critics say PROP has a conflict of interest when it advocates that pain patients be given greater access to addiction treatment.

My Life with Fibromyalgia: An Open Letter to CDC

(Editor’s Note: The Centers for Disease Control and Prevention today reopened for public comment its proposed guidelines for opioid prescribing. Comments, which will accepted until January 13, 2016,  can be made by clicking here.)

By Emma Christensen, Guest Columnist

The over-regulation of opioid medications is so very wrong for pain patients. To withdraw their access to opioid medications is reckless and punitive.

Having lived with fibromyalgia for over 15 years, searching for credible medical help and treatment has been one of the most trying experiences of my life.

One physician I sought help from was so at a loss for treating the pain I was experiencing that he put me on heavy doses of morphine. When I learned more about the medication he put me on, I began to question if I truly needed that much in order to live. 

When another physician told me I was very young to be on that high of a dosage, I searched and found literature that supported using a low dosage of morphine to take the edge off of the pain. This method of pain reduction was done in order to allow patients to function using additional alternative solutions such as Tai Chi exercise, foam rolling and trigger point therapy to help reduce significant amounts of their pain. Eventually, I tried these methods and was able to step down to the lowest dose (15mg) that is available for doctors to prescribe.

emma christensen

This low dosage worked well. I felt like I was improving and having the first bits of success in pain reduction that did not require a pill or large amounts medication.  It was just enough to take the edge off the pain. This allowed me to begin to move, exercise, and use other alternative methods of pain relief.  However, it was not possible to do this without the opioid cutting into that first layer of pain. 

I describe pain as an onion -- I had just begun to peel it.  I could not do this without relying upon the small amounts of morphine I was prescribed.

I hate the fact that I have to take this medication. I hate the fact that there is not a better solution. However, all things considered, would you rather pay for a person to be on disability and all that goes with that? Or would you rather have them remain functional and working at a job supporting themselves? I chose to be functional and working, thereby keeping my self-respect and dignity.

The day someone wants to walk a day in my shoes with this painful condition, is the day that they can tell me how my doctor and I can treat my condition.  The pain is unbearable, horrific, and relentless. If I stop any of the methods I use to fight it, it can revert to the levels it was at before I began fighting it; as if I had never done anything to fight it at all.

The low dose morphine has helped me stay functional and keep my job all these years. It takes the edge off of the horrific pain that comes with having fibromyalgia. If anything, I have been more responsible than you have, as the “monitors of society” that wish to deprive me of the one thing that allows me to remain functional.

For years, I have taken only a 15 mg dose and not more, as was originally prescribed. I am prescribed two pills a day for 30 days. I have the extra burden of having to pick up the prescription in person and to sign for it, for each refill. For me, this means I must take time off from work to get the script (if my doctor’s office is not open on Saturday morning). This is another burden.  How much more difficult do you want to make my life?  Why can’t a quarterly prescription be available for someone like me who has a history of appropriate medication usage?

I am frightened to go without the medication because my pain is real. It hurts, fibromyalgia hurts, and it brings me to tears. Just moving my arms and legs is excruciating due to the myofascial knots and inflamed fascia that I endure with this condition.

If you want to question my need for this medication, go nose to nose with me and tell me why. Tell me what other solution you suggest that is just as good and will do what I need it to do, so I can work and keep my job. I have been out there trying every solution I can find for the last 15 years.

If you think you can solve the pain, solve it! Let me or any other person who lives with chronic pain be the judge of your solution, not you. It is very obvious to those of us living in chronic pain that the CDC’s opioid guidelines are being made by people who do not experience chronic pain themselves!

If I had a choice, I would not use this medication. I would not take morphine if I did not need it. I am against using illegal drugs.  In my lifetime, I have worked in two police departments, was married to a cop, and my father-in-law was a chief of police. Additionally, I hold a Master’s degree in Public Administration. I know full well what the abuse of drugs does to families and society.

However, that doesn’t give you the right to tell me and my doctors how to treat my condition.

Blanket mandates of restriction, without credible analysis of the situation, is not a substantial enough reason to deny a class of people who are suffering and in pain their medication.  Proposed regulations should not only solve an administrative problem; but, enhance the medical profession and the support the pain patient simultaneously. Any proposals that do not measure up to this standard are beneath consideration for good practices and reasonable implementation by professional public administrators. 

Like any other crime, incidences of abuse and misuse must be regulated and substantiated in a court of law following the principles of due process. To do otherwise is punitive and unjust towards people who are innocent of such allegations.

There is another reason I felt inspired to write this open letter to the CDC.  It is my education that requires me to respond. If I do not respond and say something now while I have a chance, I could be responsible for my own loss if they take away my medication. 

We all have to stand firm to let the CDC administrators know that they cannot make decisions in a vacuum.  If we allow them to get away with this, then we are less of a democracy and more dictatorship run by administrators who do not know the negative effect that they are having on our society.  My degree is all about building a "good society." Arbitrary rules against pain patients are not the solution to this problem.  You cannot solve a law enforcement issue by doing the minimum of public administration.

If you want to help chronic pain patients, such as myself, put your energies into finding a cure for the pain patients that require these medications to cope with their daily lives; remove the barriers to treatment. You can have my medical case files; my treatments are an open book, as far as I am concerned. I have never misused my medications and do not ever plan to. Please stop persecuting those of us who are ill and find a better way to spend your time.  I am one voice, but I speak for many people who are in pain.

This open letter to the CDC is intended to invite, stimulate and encourage further discussion and commentary on this most important issue of pain management and law enforcement of illegal drugs.

Emma Christensen lives in Illinois. She was diagnosed with fibromyalgia in 2000 after a whiplash injury from a vehicle accident. Emma is currently working to be certified as a fibromyalgia health coach and hopes to help others navigate their way through treatments in order to feel and be better.  She has a Facebook support group called Fibromyalgia Solutions.

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.

Will CDC Start Listening to Chronic Pain Patients?

By Pat Anson, Editor

Friday’s announcement by the Centers for Disease Control and Prevention (CDC) that it will reconsider and delay implementing its controversial draft guidelines for opioid prescribing throws open a process that’s been largely concealed from the public.

But will it lead to changes in the guidelines themselves? And will the agency start listening to pain patients who fear losing access to opioid pain medication?

There are many different opinions from experts and activists who’ve been closely following the debate.

“A delay will not stop the inevitable, nor will a few months serve as a cooling blanket for the medical professionals and patients that are outraged by the approach CDC has taken on these guidelines.  CDC’s behavior was so outlandish that is caused an avalanche of pushback,” said Jeffrey Fudin, a pharmacist and founder of Professionals for Rational Opioid Monitoring & Pharmacotherapy (PROMPT).

“It is heartening to see that CDC has decided to do now what it really should have done in the beginning, and I hope the result is a set of recommendations that everyone can support,” said Bob Twillman, PhD, Executive Director of the American Academy of Pain Management.

“Some have said that this delay is a victory for ‘the opioid lobby,’ but I think it’s not really a victory for anyone; it might be a victory for tried-and-true methods of developing practice guidelines, and a victory for transparency, but a delay in producing reasonable, workable guidelines actually does everyone a disservice. That could have been prevented, had CDC used a proper process from the beginning.”

The process that CDC used in developing the guidelines was unusually secretive and one-sided for a public agency. As Pain News Network has reported, the CDC handpicked outside advisers dominated by special interest groups and addiction treatment specialists, most of whom were determined to rein in opioid prescribing. The CDC’s panel of experts and stakeholders included five board members of Physicians for Responsible Opioid Prescribing (PROP), an advocacy group funded by Phoenix House, which operates a chain of addiction treatment centers. Few patient advocates and pain physicians were included in the process.

Not surprisingly, the resulting draft guidelines discourage primary care physicians from prescribing opioids for chronic pain. “Non-pharmacological therapy” such as exercise and cognitive behavioral therapy were recommended instead, along with non-opioid drugs such as over-the-counter pain relievers.

The guidelines were unveiled to a select online audience in September and only a brief 48-hour window was allowed for public comment. That sparked an outcry from the pain community. In a survey of over 2,000 pain patients by Pain News Network and the Power of Pain Foundation, large majorities complained that non-opioid treatments didn’t work for them or were not covered by insurance. Others predicted the guidelines would cause even more addiction and overdoses, not less.

The CDC largely ignored the complaints and said it would continue with plans to implement the guidelines in January, as planned.

Only in recent weeks, when the CDC started getting “feedback” from others did the agency reconsider. It was threatened with a lawsuit by the pro-business Washington Legal Foundation and officials from other federal agencies mocked the guidelines as “ridiculous” and “an embarrassment to the government.”

“CDC appreciates the feedback we have received to date, which has informed and strengthened the document thus far, and we look forward to receiving further input to improve the way opioids are prescribed,” said Debra Houry, MD,  the CDC official in charge of developing the guidelines, in an email Friday to stakeholders.

The agency now says it will reopen the public comment period for 30 days, starting on Monday, December 14th. The draft guidelines will also be reviewed by a scientific advisory panel, which will appoint a new work group to consider changes, a process that could take several months or more.

“I think it's a good idea to get broader input. Some have been critical of CDC, but the criticism has swirled primarily around the process itself, particularly the need for more input. More input can't hurt. It's my sense that the draft guidelines themselves have generally been well-received,” said David Juurlink, MD, a PROP board member who served on one of the CDC’s advisory committees. 

“Regarding the Washington Legal Foundation, I note that they've lobbied previously on behalf of Exxon Mobil, Philip Morris and Purdue Pharma. People can infer from this what they will.”

Jeff Fudin thinks the review process is yet a smokescreen.

“It seems to me that CDC is forming more committees and more layers to shield liability and hide behind their transgressions.  Rather than do this, I’d like to see a committee formed to examine how CDC’s actions around the guidelines happened in the first place, including but not limited to the choice of committee members and all potential conflicts and alliances among participants. Only after we understand how the CDC went awry can a fair scientific board be put in place to avoid a snowball of transgressions,” Fudin said in an email to Pain News Network. 

“The CDC realizes that they created a fire storm with their politically driven guidelines,” said Lynn Webster, MD, past president of American Academy of Pain Medicine. “It is good that they have heard the crescendoing opposition to what they have done.  We will have to see if it is just a maneuver to appease the concerns or if they are truly interested in working to be more inclusive and scientific in developing the guidelines.

“There are two fundamental concerns with the proposed guidelines.  The first is the secretive process and inclusion of advisers who are biased and prejudicial against opioids.  The other major concern is that the recommendations do not match the level of evidence.  This is what is most bizarre from the CDC, since the CDC is supposed to be a scientific body which uses best evidence in proposing health recommendations for the country. They failed to follow this principle in this case.”

Another bizarre part of the process is that – outside of September’s webinar -- the CDC has never made the guidelines available on its website, in a news release, or in any public forum. That will finally change on Monday when the draft guidelines are published in the federal register.

CDC Delays Opioid Prescribing Guidelines

By Pat Anson, Editor

Faced with the threat of lawsuits and growing ridicule from patients, physicians and other federal agencies, the Centers for Disease Control and Prevention (CDC) has apparently decided to delay for several months plans to implement its controversial opioid prescribing guidelines for chronic pain.

Today the agency filed a formal notice in the federal register that it was opening a 30-day public comment period on the guidelines, which had been scheduled for adoption in January. The guidelines would discourage primary care physicians from prescribing opioid pain medication in an effort to end what has been called an “epidemic” of addiction and overdoses.

“In response to feedback, CDC is posting its draft opioid prescribing guideline for chronic pain in the Federal Register for 30 days of public comment. In addition, in early 2016 the CDC National Center for Injury Prevention and Control’s Board of Scientific Counselors (BSC), a federal advisory committee, will review the draft guideline. CDC will ask the BSC to form a workgroup to review the guideline and public comments and present recommendations to the BSC,” the CDC said in a statement to Pain News Network.   

The public comment period will run from December 14th  until January 13, 2016.

The CDC unveiled the guidelines in September to a select online audience and then only allowed a 48-hour public comment period. The agency was roundly criticized for its secrecy during the drafting of the guidelines and for consulting with special interest groups, but few pain patients or pain physicians. The agency never made the guidelines available on its website or in any public form outside of the webinar.

A spokesperson told PNN the guidelines will finally become available for public scrutiny on Monday when they are published in the federal register.

A list of the dozen draft guidelines that were released in September can be found here. They recommend “non-pharmacological therapy” as the “preferred” treatment for non-cancer pain, and state that limited quantities and doses of opioids should be prescribed for both acute and chronic pain. The CDC later said the draft guidelines were being revised, but didn't release the changes.

Last week, a key government panel that oversees pain research indicated it would file a formal objection to the guidelines. Politico reported that the National Institute of Health’s Interagency Pain Research Coordinating Committee believes there is little or no evidence to support many of the prescribing guidelines. Some committee members reportedly called the agency’s recommendations “ridiculous” and “an embarrassment to the government” during a meeting.

Sharon Hertz, a top FDA official, was quoted as saying the evidence used to support the guidelines "is low to very low and that's a problem."

Another top official in the Department of Health and Human Services told the research committee the CDC’s guidelines were “shortsighted” and there was a rush to judgement.

"You know, damn the torpedoes. Full speed ahead," said Wanda Jones, principal deputy assistant secretary for health at HHS.

The Washington Legal Foundation (WLF) also signaled it was prepared to file a lawsuit to stop the guidelines from being implemented, accusing the CDC of “blatant violations” of federal law for not holding public hearings and refusing to publicly identify members of its advisory committees.

“The overly secretive manner in which CDC has been developing the Guideline serves the interests of neither the healthcare community nor consumers,” wrote WLF chief counsel Richard Samp to CDC director Tom Frieden.

In a survey of over 2,000 patients by Pain News Network and the Power of Pain Foundation, over 90% said the guidelines were discriminatory and would be more harmful than helpful to pain patients. Most said they had already tried non-opioid treatments, such as massage, acupuncture and cognitive behavioral therapy, and found that they didn’t work or were not covered by insurance. Many predicted the guidelines would lead to more suicides in the pain community, and cause more addiction and overdoses, not less.

Naltrexone ‘Changed Life’ of Fibromyalgia Patient

By Donna Gregory Burch

The pain in Janice Hollander’s legs was so excruciating that she wanted to cut them off. Diagnosed with fibromyalgia in 2013, she’d progressed through the normal litany of prescription drugs doled out by physicians – Lyrica, Cymbalta, gabapentin, muscle relaxers and narcotics – all without finding relief.

Then she happened to catch an episode of the Dr. Oz Show where a guest discussed using low-dose naltrexone (LDN) as a treatment for chronic pain. A few days later, she convinced her doctor to write a prescription and took her first dose of LDN.

“After about seven days, my pain lessened,” said Hollander of Michigan. “It lessened by 10 or 20 percent. That was huge! Even just that little bit of lessening was huge.”

After four weeks, the depression that had been stymying her for years lifted. At six weeks, she saw a noticeable increase in her energy levels. Her brain fog improved, and her memory returned.

Hollander has been taking LDN for about year now, and she’s probably one of its biggest fans within the fibromyalgia community. She regularly shares her success story in online support groups.

Hollander still has fibromyalgia symptoms, but they are more manageable thanks to LDN.

“I would say my leg pain is pretty much gone,” she said. “[LDN] has completely changed my life. I don’t know that I would be here today if it wasn’t for it. I don’t think I could go for another year in the misery I was in.” 

A growing number of fibromyalgia sufferers like Hollander are finding relief using LDN. It’s an unusual discovery since LDN is best known in the addiction treatment community. The U.S. Food and Drug Administration approved LDN to treat addiction to certain opiate drugs in 1984.

janice hollander

Dr. Jarred Younger, who conducted two LDN/fibromyalgia studies at Stanford University, believes LDN has an anti-inflammatory effect on the brain.

“This is one of the few drugs that can do that in the brain because it crosses the blood-brain barrier,” Younger said.

In simple terms, the brain contains microglial cells that look for problems within the central nervous system. When they discover an abnormality, these cells release chemicals into the body that cause fatigue, pain, cognitive disturbances and other symptoms common among fibromyalgia patients. In a healthy person, these chemicals are intended to slow down the body, to force it to rest, so that it can heal from whatever has caused the abnormality. In fibromyalgia, some researchers hypothesize this normal central nervous system response gets activated and doesn’t shut off.

“It’s like the central nervous system thinks you have an infection when you don’t,” Younger explained.

Fibromyalgia sufferers often speculate about what caused their condition, and researchers have debated various triggers for years. Viruses (herpes, Epstein Barr, etc.), chronic stress, genetics, obesity, aging and pollution are suspects, but according to Younger, it could be all of these.

He believes LDN works because it calms the microglial cells and reduces brain inflammation.

Penn State University researcher Ian Zagon posits a different mechanism behind LDN. Zagon’s opioid blockade hypothesis surmises that LDN blocks the brain’s opioid receptors, essentially tricking the body into increasing production of natural pain-suppressing chemicals.

Theoretically, both hypotheses could be correct.

Younger’s two Stanford University studies showed LDN outperformed Lyrica, Cymbalta and Savella, the three drugs currently approved to treat fibromyalgia in the U.S., and it did so with minimal side effects. The most common side effects are headache, insomnia, vivid dreams and nausea – all of which usually disappear over time.

“Probably 65 percent of people get an appreciable decrease of symptoms,” Younger said.

But more research is needed to confirm these early findings.

Next year, Younger will conduct at least two LDN/fibromyalgia studies at his new facility, the Neuroinflammation, Pain and Fatigue Lab at the University of Alabama at Birmingham.

One study will try to parse out the most effective dose of LDN for fibromyalgia. Most LDN users are prescribed the drug off-label, between 1.5mg and 4.5mg daily. But some rheumatologists have shared anecdotal accounts that certain patients respond better to higher doses, ranging up to 9mg.

A second trial will pair LDN with dextromethorphan, a common cough suppressant that’s believed to work similarly to LDN.

But many fibromyalgia sufferers aren’t waiting for the research. They’ve found ways to secure a prescription and try LDN for themselves.

Linda Elsegood, founder of the U.K.-based LDN Research Trust, has helped thousands of people gain access to LDN. She credits LDN with stabilizing her multiple sclerosis. At her worst, Elsegood was wheelchair bound, had no control of her bowels or bladder and had lost much of her sight and hearing. After 18 months on LDN, she was able to walk again on her own and had a reversal of most of her symptoms.

After her remarkable recovery, she wanted to educate others on the benefits of LDN.

“I wanted people to know that there is a choice, if you’ve been told, like me, that there’s nothing else that can be done for you,” she said. “Look into LDN. Do your research. … It is amazing the number of people who’ve found LDN works for them for so many different conditions.”

In addition to fibromyalgia, early research has found LDN to be useful in reducing the symptoms of certain autoimmune and central nervous system conditions, including multiple sclerosis, Crohn’s disease, rheumatoid arthritis and others.

But few doctors know about LDN as an emerging treatment, so it can be difficult to get a prescription.

“Some doctors are too busy to read the information,” Elsegood explained. “Some will not think outside of the box. It’s not what they learned in medical school, so they’re not prepared to consider something that is alternative. Other doctors won’t prescribe it because there aren’t enough trials.”

Unfortunately, it’s unlikely that any of the major drug companies will ever study LDN because it’s an older, generic drug and little profit can be made from it. So it falls to innovative researchers, like Younger, who secure donations and grants to fund trials.

Patients often encounter doctors who refuse to prescribe LDN even though it has a proven safety record and a low risk of side effects. The LDN Research Trust includes a list of LDN-friendly doctors and pharmacies on its website. For those who can’t find an LDN-friendly doctor locally, there are physicians who offer phone and online LDN consults.

“My advice is to always research it yourself, and then address it with your doctor,” Hollander said. “And if your doctor won’t agree to letting you try it, then find a doctor who will.

“I would drive to Florida to get it if I had to. It makes that big of a difference. I just wish more doctors would prescribe it, and more people would find help with it.”

For a list of helpful LDN resources, visit www.fedupwithfatigue.com/low-dose-naltrexone.

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained symptoms. Donna is the founder of Fed Up with Fatigue, a blog devoted to helping those with fibromyalgia and ME/CFS live better with these conditions.

Donna is an award-winning journalist whose work has appeared online and in local newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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.

Controversy Grows over Journal Article on Pain Treatment

By Pat Anson, Editor

It’s not uncommon for colleagues in the medical profession to disagree. Egos and different medical backgrounds can sometimes lead to heated discussions about the best way to treat patients. But those arguments are usually kept private. 

That is why it is so unusual for a prominent pain physician to publicly call for another doctor to resign or be fired from her faculty position at a prestigious medical school.

“I believe she should resign her academic post,” says Forest Tennant, MD, referring to Jane Ballantyne, MD, a professor at the University of Washington School of Medicine, who recently co-authored a controversial article in the New England Journal of Medicine (NEJM) that said reducing pain intensity should not be the goal of doctors who treat chronic pain. The article also suggests that patients should learn to accept their pain and move on with their lives.

“For somebody in her position as a professor at a university to call for physicians to quit treating pain – or pain intensity – whether acute, chronic, whether rich, poor, disabled or what have you, is totally inappropriate. And it’s an insult to the physicians of the world and an insult to patients. And frankly, she should not be a professor.” Tennant told Pain News Network.

“To suggest that physicians should no longer treat pain intensity and let patients suffer goes beyond any sort of decency or concern for humanity.”

Tennant is a pain management specialist who has treated patients for over 40 years at his pain clinic in West Covina, California. He’s authored over 300 scientific articles and books, is editor emeritus of Practical Pain Management, and is highly regarded  in the pain community for accepting difficult, hard-to-treat patients that other doctors have given up on.

dr. forest tennant

Tennant was surprised the influential, peer-reviewed New England Journal of Medicine, which reaches over 600,000 people each week, even published the article.

“I know that they’re biased and they’ve got all their medical device people there and all their academia and all that, but I think they have a responsibility also. They are supposedly representing medicine,” says Tennant. “Why do I have a medical degree if I’m not supposed to treat pain intensity? Give me an answer to that. She didn’t have an alternative did she?”

dr. jane ballantyne

Exactly what Ballantyne and co-author Mark Sullivan, MD, meant to say is open to interpretation. Pain News Network has been unable to get comment from either about the controversy.

They began their article by saying “pain that can be relieved should be relieved,” but then veer off in another direction, stating that chronic pain should not be treated with opioid pain medication.

“Is a reduction in pain intensity the right goal for the treatment of chronic pain? We have watched as opioids have been used with increasing frequency and in escalating doses in an attempt to drive down pain scores — all the while increasing rates of toxic drug effects, exposing vulnerable populations to risk, and failing to relieve the burden of chronic pain,” they wrote, dismissing the pain intensity scales that are widely used by physicians to measure pain levels.

“We propose that pain intensity is not the best measure of the success of chronic-pain treatment. When pain is chronic, its intensity isn't a simple measure of something that can be easily fixed.”

Ballantyne and Sullivan offered no alternative “fixes” for pain treatment, other than patients learning to live with pain and sitting down for a chat with their doctors.

“Nothing is more revealing or therapeutic than a conversation between a patient and a clinician, which allows the patient to be heard and the clinician to appreciate the patient's experiences and offer empathy, encouragement, mentorship, and hope,” they wrote.

Angry Comments from Readers

The article infuriated both patients and physicians, including dozens who left angry comments on the NEJM website.

“Great job. I will be going into the coffin business thanks to these believers that people should suck it up. How NEJM even recognizes these people as doctors and not quacks is beyond me,” wrote Michael Shabi, who identified himself as a family practice physician.

“I take just enough narcotic pain meds to cut the edge off of my pain to be coherent enough to love my wife and respond to your constant misinformation. I have had 21 neurological surgeries and procedures and live in constant pain. So why in the heck do you people have such a problem in hearing us?” asked pain patient Kerry Smith.

“Only an idiot might conclude that one can dismiss the effects of living with a healthcare problem that reminds you of its presence with every move you make,” wrote Terri Lewis, PhD, a specialist in rehabilitation.

Both Ballantyne and Sullivan have lengthy careers in medicine and have been active in organizations that discourage the use of opioids. 

According to the University of Washington website, Ballantyne received her medical degree from the Royal Free Hospital School of Medicine in London and trained in anesthesiology at John Radcliffe Hospital in Oxford. She moved to Massachusetts General Hospital in Boston in 1990 and then to the University of Washington in 2011, as a Professor of Education and Research and as Director of the UW Pain Fellowship. 

Last year Ballantyne was named president of Physicians for Responsible Opioid Prescribing (PROP), an advocacy group funded by Phoenix House, which operates a chain of addiction treatment centers. She also serves as an expert adviser to the Centers for Disease Control and Prevention (CDC) as it develops controversial new guidelines that discourage primary care physicians from prescribing opioids. Ballantyne is one of five PROP board members who are advising the CDC on the guidelines.

Sullivan is a Professor of Psychiatry and Behavioral Sciences -- also at the University of Washington School of Medicine -- and is executive director of Collaborative Opioid Prescribing Education (COPE), a program that educates healthcare providers about safe opioid prescribing practices. He is also a PROP board member.

Sullivan has authored several research articles on opioids, including a recent one warning about the co-prescribing of sedatives and opioids.

“He’s not as well known,” says Tennant. “He doesn’t carry the public influence that she does. She’s sitting on federal committees, advising CDC that pain patients should not be treated and the intensity scale should not be used. I cannot imagine anyone making that statement. I can’t imagine the New England Journal of Medicine publishing it. The atrocity here is just awful.

dr. mark sullivan

“Any semblance of decency left among physicians in PROP, if that’s what they believe, then I think the whole organization ought to close its doors. I didn’t know they were going to say we didn’t want pain treated at all. They said they wanted to use opioids responsibly. Well, that’s fair. But that’s not what she said.”

Tennant is urging the pain community to contact Paul Ramsey, the CEO of UW Medicine and Dean of the School of Medicine to ask that Ballantyne be fired. He’s gotten a few takers, including Becky Roberts, who suffers from arachnoiditis.

“I do not feel she should be teaching new medical students. Professor influence is big when you are a student. I am sure if any one of them read her article, most were probably shocked,” Roberts said in an email to Pain News Network.

“They did not get into medicine because they are uncaring. Compassion for other human beings is why they went to medical school. To help heal human beings is their goal. I really do think she needs to be removed from that position. How long has she been teaching this kind of logic?”

The UW School of Medicine has about 4,500 students enrolled in undergraduate, professional, and post-graduate programs. 

Power of Pain: How to Make Holidays Less Stressful

By Barby Ingle, Columnist                                               

Maintaining holiday traditions can be hectic and stressful -- even for healthy people. This should be an enjoyable time of year for everyone, but for people with chronic pain and physical limitations, they bring an extra element of challenges and stress. 

How do you cope with the holidays? Do you approach them in a hectic manner or do you break down the tasks into manageable ones? How do you get through the holiday season and enjoy it?

Here are a few tips I’ve learned about planning ahead, gift giving, and setting the expectation.

Start by prioritizing activities and only worry about things that are important to you and your family. Organize your schedule to include a time for each item to be completed by time frame and importance. Begin early with more complicated tasks and expect a “bad” day or two so they don’t cause stressful situations at the last minute.

It is important to avoid the last minute rush of gift buying and other holiday activities. Either cut out the nonessential steps, get help setting them up, or start early giving yourself plenty of time.

It is also good to work on your preventative health: nutrition, posture, and positive mental attitude.

When it comes to attending parties, I would suggest you attend others instead of hosting them yourself. That way you can make an appearance and leave before all of your energy is spent. You can let the host know that you can only stay for a limited time due to other commitments, and if you decide to stay longer, all the better. Once you explain your limitations to the event host, you’ll find your stress level will be reduced. Setting the expectation early is very important in group settings.

When it comes to gift giving, my best tip is to buy gifts online -- no walking or waiting! The items will arrive at your house or theirs, and you’ll save your energy for other tasks. Take advantage of free shipping when possible and online coupon codes to save money.

When it comes to making your gifts presentable, use gift bags. They’re easier than traditional wrapping, and save time and energy. Although decorations are beautiful, downsizing can still be festive and keep everyone in the holiday mood.

Communication is key to a successful season. It helps to talk to guests or party hosts ahead of time and explain your limitations as a chronic pain patient. When you are hosting an event, delegate duties as much as possible. The same goes when it comes to decorating. It is okay to ask for help and accept your limitations without guilt or blame. It is not your fault that you live with chronic pain. Help others understand your limits by sharing with them ahead of time what they are and telling them what they can do to help make it easier for you and other guests.

For the guests that “will never understand,” realize that you are not there for them. You are there for yourself first and others at the holiday event who love and support you. You can have a great time no matter who else is there or if they understand your pain or not.

It doesn’t matter what anyone else thinks about your health and protecting your body and mind. It is okay to take care of yourself first, especially during the holidays.

Let go of the stress, guilt and excess. Trim down the excess and turn the hustle and bustle of the holidays into a fun enjoyable time to be thankful for, with great memories to hold onto for years to come.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of 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.

New Skin Patch Delivers Pain Relief with Ibuprofen

By Pat Anson, Editor

There are many different types of skin patches already on the market to treat pain --- containing everything from lidocaine to capsaicin to powerful opioids like fentanyl. Now British researchers say they’re a step closer to developing the first transdermal patch containing ibuprofen.

Researchers at the University of Warwick have formed a company called Medherent to produce and patent an adhesive patch that can deliver a high dose of ibuprofen through the skin for as long as 12 hours to treat conditions such as back pain, arthritis and neuralgia.

Their patch differs from others already on the market because the medication is embedded into the polymer matrix that sticks the patch to the patient’s skin. The embedding technology allows the patch to contain 5 to 10 times the amount of analgesic currently used in medical patches.

"Many commercial patches surprisingly don't contain any pain relief agents at all, they simply soothe the body by a warming effect,” says University of Warwick research chemist Professor David Haddleton.

image courtesy of medherent

“Our technology now means that we can for the first time produce patches that contain effective doses of active ingredients such as ibuprofen for which no patches currently exist. Also, we can improve the drug loading and stickiness of patches containing other active ingredients to improve patient comfort and outcome."

The researchers are now testing other analgesics to see if they too can be embedded into the polymers. So far they’ve had good results with methyl salicylate – a wintergreen-scented chemical used in some topical liniments and gels.

“We believe that many other over the counter and prescription drugs can exploit our technology and we are seeking opportunities to test a much wider range of drugs and treatments within our patch," says Haddleton.

In an email to Pain News Network, Medherent’s CEO said the technology is compatible with a wide range of drugs, including opioids. The company is currently seeking partners to help develop the patches.

"Our first products will be over-the-counter pain relief patches and through partnering we would expect to have the first of those products on the market in around 2 years,” said Nigel Davis. “In addition to our pain relief products, our technology also works with drugs in many other therapeutic areas. We can see considerable opportunities in working with pharmaceutical companies to develop innovative products using our next generation transdermal drug-delivery platform."

Adding opioids to the mix is tricky business, because some opioid patches already on the market are being abused. According to CBCNews, transdermal patches containing fentanyl are blamed for over 600 deaths in Canada. Addicts have learned they can cut up fentanyl patches to smoke or ingest them  

Asked if Medherent’s patch technology would prevent similar abuse, Davis said, “We hope so but need to do more work on that before we make claims of that sort. “

Decision on Opioid Implant Nears

Meanwhile, Titan Pharmaceuticals (NASDAQ: TTNP) has announced that the Food and Drug Administration has scheduled a meeting with the company next month to discuss its new drug application for Probuphine, an implant containing buprenorphine, a weak acting opioid used to treat addiction.

Ironically, some addicts have learned they can get high by abusing buprenorphine and it is prized as a street drug that can ease withdrawal pains from heroin. Buprenorphine, which is more widely known under the brand name Suboxone, is currently only available in pills and oral films.

The Probuphine implant would be difficult to abuse. About the size of a matchstick, it is designed to be inserted subcutaneously under the skin of the upper arm, where it can release steady doses of buprenorphine for as long as six months.

Titan and its partner, Braeburn Pharmaceuticals, believe the implant technology could someday be used to deliver other medications, including opioids for pain relief.

image courtesy of titan pharmaceuticals

Probuphine’s path to the marketplace hasn’t been a smooth one. Braeburn and Titan were stunned in 2013 when the FDA denied approval of the implant and asked for a new clinical study of Probuphine’s effectiveness. Since then, the companies have conducted a study showing that the implant was more effective than buprenorphine tablets in treating addiction. The companies are hoping for FDA approval in 2016.

The Importance of Treating Chronic Pain

By Emily Ulrich, Columnist

If you are a chronic pain sufferer, by now you may have read about the proposed opioid guidelines by the Centers for Disease Control and Prevention (CDC), and a recent article about opioids in the New England Journal of Medicine. In the latter, Jane Ballantyne, MD, and Mark Sullivan, MD, wrote that reducing pain intensity – pain relief – should not be the primary goal of doctors who treat pain patients. They suggest that patients should learn to accept their pain and move on with their lives.

This statement is nothing short of infuriating to me and I imagine to anyone who has to live with chronic pain. Many of us have already heard a doctor say, “I don't prescribe pain medicine. Pain won't kill you.”

There are so many things wrong with that ideology, and the “facts” that are being used to support it in the anti-opioid movement, that it's difficult to know where to begin. There are years of research that show that pain left untreated or under-treated does in fact kill. It may not happen right away, but it greatly affects our quality of life and kills us slowly in a variety of ways.

Most of us know that chronic pain causes depression, anxiety, and even suicidal thoughts. There is also a very long list of comorbidities that often come with chronic pain, including hormonal and metabolic imbalance, impaired immune function, skin rashes, ulcers, incontinence, high blood pressure, and much more -- all of which ultimately lead to a decline in quality of life and overall health.

Unrelieved pain can also permanently change the brain and nervous system, preventing the brain from fully resting and developing new cells to repair brain damage. Research shows that the brains of pain patients can deteriorate over the course of a year at a rate which would take a healthy person's brain one to two decades. Cerebral atrophy causes seizures and dementia, both of which can lead to death, and both of which are preventable in pain patients when given adequate pain care.

Staggeringly, none of this seems to have been taken into consideration by the CDC or the doctors who have written this recommended “treatment” approach. One is perplexed by the “sweep it under the rug” mentality of these doctors, and the many who will be influenced by the CDC and the anti-opioid suggestions published in the New England Journal of Medicine.

The facts are this: Opioid misuse is not epidemic in the U.S. (opioid overdose is not even in the top 20 causes of death), but chronic pain is pandemic.

The overwhelming majority of pain patients who use opioids do not abuse or divert them. Yet the majority of patients are under-treated or even untreated for chronic pain. The roots of this mistreatment are myriad, and some are steeped in socio-economic factors such as gender, race, and disability. Minorities are more likely to have their pain minimized or ignored.

In addition, doctors have an exaggerated fear of addiction. Many fear repercussions from the DEA or their state medical board if they prescribe too many opioids, and there is a general lack of pain education on the part of many doctors.

Most of all, money is running the show. It seems that the American healthcare system sees us as useless members of society, who can either be eliminated or turned into eternal consumers. Treating us only with drugs that have dangerous side effects requires a whole new set of medications to treat the host of new ailments that their drugs have given us.

Another cog in the “Big Pharma” takeover of chronic pain (where we are offered treatments such as Lyrica, Neurontin, antidepressants, NSAIDs, biologics, etc., instead of inexpensive and proven opioid therapy) is that the CDC consulted with addiction treatment specialists, as well as insurance and drug company influenced “researchers” who have a conflict of interest.

Dr. Ballantyne, who is a member of the CDC's "Core Expert Group," reports receiving grants from Pfizer and being president of Physicians for Responsible Opioid Prescribing (PROP). She also served as a consultant to a law firm that litigates against opioid drug makers. Dr. Sullivan reports receiving grants from drug makers developing abuse deterrent products and personal fees from Janssen and Relievant.

We have to speak up. We have to educate ourselves and sometimes our doctors. Many of us don't realize (and some doctors don't want us to realize) that we have a basic human right to pain care. According to the Journal of American Society of Anesthesiology, “the unreasonable failure to treat pain is poor medicine, unethical practice, and is an abrogation of a fundamental human right.”

Doctors and patients must acknowledge that chronic pain is deadly. It can cause countless fatal conditions, not the least of which are heart attack, stroke and brain damage. And while opioids are not the only route to reduced pain, they are very important players in the path to pain relief. For most of us, opioids are part of a multi-modal treatment to lessen our pain, as well as a treatment of last resort.

The “alternative treatments” suggested by the CDC, Ballantyne and Sullivan include therapies most of us have either tried or had fail; or they are already part of our overall pain therapy.

In their article Ballantyne and Sullivan write, “Nothing is more revealing or therapeutic than a conversation between a patient and a clinician, which allows the patient to be heard and the clinician to appreciate the patient's experiences and offer empathy, encouragement, mentorship, and hope.”

I agree with them on this one point. However, they left out one essential element, the treatment plan that the patient and doctor come up with. For most of us, a main component of treatment is opioids.

Now is the time to speak up, before we have brain damage or die. Join me in creating a #PainedLivesMatter movement.

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS/RSD), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, Endometriosis, chronic gastritis, Interstitial Cystitis, Migraines, Fibromyalgia, Osteoarthritis, Periodic Limb Movement Disorder, Restless Leg Syndrome, Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and Irritable Bowel Syndrome.

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the Power of 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.