Jeff Sessions, Aspirin and Toughing It Out

By Crystal Lindell, Columnist

My first reaction to reading that Attorney General Jeff Sessions thinks pain patients should just “tough it out” was probably not appropriate for this publication.

My second reaction probably wasn’t either.

If you haven’t heard, Sessions hates drugs. Like a lot. He literally once said, “good people don’t smoke marijuana.”

And now, he apparently thinks good people shouldn’t use opioid pain medication.

"I am operating on the assumption that this country prescribes too many opioids," Sessions said during a speech at the U.S. Attorney’s office in Tampa. "People need to take some aspirin sometimes and tough it out.”

Okay. Look. Setting aside the fact that data consistently shows that most people do not start heroin because they received a legitimate hydrocodone prescription, let’s talk about this whole idea of “toughing it out.”

Because that’s the thing about pain, when it’s not yours, it’s incredibly easy to endure. All you really have to do is throw around clichés about being a strong person, and maybe sprinkle in some lame advice about yoga and acupuncture.

Depending on your mood, you might even add in a few judgmental asides about avoiding gluten and getting enough exercise. And just like that: Voila! You’ve dealt with it! Problem solved.

But when it’s your pain. When it’s eating away at your soul, it’s never that easy. And it never gets easy.

Left untreated, the pain that wraps around the right side of my ribs has left me dreaming of drowning in a bottle of Drano just to make it stop. It has buried me in bed and left me for dead, so heavy on my chest that I can’t get up. It has stolen my nights and destroyed my days. And it has done its very best to rob me of my hope. 

In short, it’s been hell. And the words that would make you truly understand how awful it has been do not exist.

But thankfully, I found a doctor who has helped me get through hell and manage my constant pain with opioid pain medications.

And it’s because of those medications that I can live. I can work. I can be a friend, and a sister, and a lover, and a writer, and daughter. I can be connected to the magic of the universe again.

There is so much we can do to fight the opioid epidemic. Those suffering from addiction need long-term treatment that includes professional psychiatric help. They need to be offered medicated withdrawal when needed, and given a strong support system. And they need empathy.

In fact, it’s the same empathy pain patients need, just applied differently.

I don’t expect a man like Jeff Sessions to understand this. He has never been in horrific pain. And honestly, as much as I hate him, I hope he never is.

But if he does wake up with pain one day, and realizes how important it is to treat that pain, I hope he looks back on his life with regret and remorse, as he realizes how incredibly wrong he was to ever suggest that people in pain “tough it out.”

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

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

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

Motivational Speaking for the Pain Community

By Barby Ingle, Columnist

There are many types of patient advocates. One of my favorite is being a motivational speaker. Sharing my personal story of trials and challenges -- and how I overcame them -- is motivational to me and inspirational to those who have heard me speak at pain conferences.

I often get the comments like: How did you learn to be a motivational speaker? How can I share my story with the world?

Many pain sufferers have compelling stories of over treatment, undertreatment and mistreatment by the medical system, but they are not as focused as they need to be for motivational speaking. I'd like to share a few tips that I’ve learned.

First, you have to create a plan. You have to become the expert of your own story. And you need to develop a goal or outcome that you want your listeners to learn – an “action item” for them when your presentation ends.

After you organize your thoughts and create your presentation plan, figure out how long your talk is going to be. You could be allotted anywhere from 10 minutes to an hour to speak. I know I could go on for 8 hours straight on some topics. Do you need to save time for questions? Do you want to allow people to interrupt you during your presentation or after?

Where do you speak? If this is totally new to you, you may want to start at your child’s school for career day. Yes, being disabled and having chronic pain is equivalent to a career. I actually wish some of the parents who were disabled or chronically ill when I was growing up would have come to my school to do a presentation. It helps plant a seed, so that if a child or their family member finds themselves in a similar situation, they can remember the lessons they learned.

Another place to speak is your church or local library. After you speak 10-20 times to smaller groups and develop a focused and polished presentation, you can turn to your local hospitals and pain clinics and see if they need a presentation from the patient’s perspective. There are also online opportunities, such as webinars put on by nonprofits, Facebook or Periscope live sessions that can help you practice and develop your public speaking skills.

As you build experience, you will sharpen your message, get better at understanding your audience, and learn what is best to skim over and what is important to present in full. Having backup material to present is also very helpful.

Be prepared for anything. I once passed out during a speech. Just fell over. How would you handle it? I had them bring me a chair and a water bottle. Now I always go on stage with a water bottle.

Finally, understand that motivational speaking is not for everyone. It takes someone who is organized and willing to share the messy details of their life with actionable goals on how to turn it around. As my friend Judy Carter says, “You can’t have a message without a mess.”

It takes work. I practiced speaking with my dad and husband, tape recording myself to see how many “um's” and “like, you know” I was saying and how to cut them out. The secret is practice and preparation.

The breakdown of steps for me goes like this:

1. Write down your topic, facts, personal story and the “take away” for listeners
2. Practice by yourself
3. Practice in front of someone
4. Put yourself out to the world as a potential speaker
5. Stay within your allotted time -- which requires you to be focused and practiced
6. Allow time for questions at the end. If no one has any, have a recap message ready so you can end on a positive and productive note.

Keep in mind that you are a pain patient and sometimes you have to prepare by resting – both before and after your talk. The endorphins I get when on stage are a pain reliever for me, but when they wear off I hit the bed and need a few days of recovery. Be ready for this to happen to you.

It’s more important than ever for pain sufferers to share their stories. We are poorly understood and often ignored when decisions are made about our healthcare. We need to be our own best advocates – whether it’s testifying at a legislative hearing, participating in a pain support group, or speaking at your child’s school.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.  

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

Darknet Markets and the Opioid Crisis

By Roger Chriss, Columnist

Darknet drug markets are far larger, more pervasive and more involved in the opioid crisis than is generally realized.

The U.S. Senate recently released a report stating that $800 million worth of fentanyl pills were illegally sold online to customers in the U.S. over a two-year period. Purchases were made from 43 states, with the most orders coming from Ohio, Pennsylvania and Florida.

Sellers are so sophisticated they accept multiple forms of payment, preferring Bitcoin because the cryptocurrency is hard to trace. But they are also using Western Union, MoneyGram, PayPal, credit cards, and prepaid gift cards.

But the Senate report barely scratches the surface of the online drug market.

Drugs have been available online since the beginning of the internet. Legend says that the first online purchase ever made was for a bag of marijuana in the 1970s in California.

By the 1990s, drug dealers and traffickers had adopted mobile communications to reach buyers and avoid detection, and the Open Vendor Database listed classified ads for a variety of substances.

The rise of Web 2.0 technology and online shopping led to the Silk Road, the first modern darknet market. Silk Road came online in February 2011 and gained immediate attention in the geek community. Gawker published an article about it in June 2011, and Wired.com also covered its increasing influence and ultimate downfall in 2013.

More darknet markets arose in the wake of Silk Road, including its immediate successors, Silk Road 2.0 and Silk Road Reloaded, as well as Utopia, Agora, and AlphaBay. All relied on internet protocols to anonymize their communications and cryptocurrencies like Bitcoin for relatively secure transactions.

The Tor anonymity network was developed in the mid-1990s by the U.S. Naval Research Lab to protect online intelligence communications. It was designed to be highly secure and easy to use, and is still primarily funded by the federal government. Its purpose is to safeguard journalists and dissidents, and to enable U.S. intelligence operations overseas. But because of how it works, it is well suited for illegal activities, too.

In other words, the internet now makes for an almost ideal operating environment for illegal drug markets. The globalization of the industrial marketplace, efficient international shipping and low-cost mobile communications enable some of these markets to function as efficiently and effectively as online retailers like Amazon.

Modern Darknet Markets

The modern darknet is now a major source of heroin, illicit fentanyl and other illegal opioids, as well as virtually every other illegal substance imaginable. The scale of this market is staggering, and its efficiency is stunning. Darknet markets look like familiar online merchants, complete with user reviews, shipping information and promotions, as well as excellent customer service. In practical terms, this means that a person who wants a particular substance can obtain it almost overnight with little more than a few clicks or taps.

The darknet is sufficiently sophisticated to have its own news sites, market information and discussion forums. Activity is tracked and discussed with precision and zeal.

Measuring the precise size of the darknet economy can be challenging. From 2013 to 2015,  Carnegie Mellon researchers estimate that darknet sales volume fluctuated between $100 million and $180 million annually. Importantly, sales volume remained about the same even after law enforcement crackdowns and arrests.

The darknet operates with relative impunity for a variety of reasons. Drugs are sourced from manufacturers in multiple countries, not just China, and substrates for these drugs are also sourced from multiple locations. Thus, the manufacturing supply chain is not vertically integrated and cannot be easily disrupted. Instead, it is highly diversified, making it robust against arrests, takedowns and product interdiction.

Transport and delivery of drugs involve not only the U.S. Postal Service, but every other mode of shipping. This includes conventional approaches like UPS and FedEx, as well as private courier services and livery companies. It extends to tunnels, boats, aerial drones and ad hoc transportation services arranged online.
 
In addition to darknet markets, there are also unlicensed online pharmacies, pill mills, and rogue physicians. It is not clear if the darknet is supplying street dealers, but it seems safe to assume that these illegal operations are interacting in mutually beneficial ways.

Attorney General Jeff Sessions recently announced the formation of the Joint Criminal Opioid Darknet Enforcement (J-CODE) unit, which is made up of federal agents and cyber experts whose aim is to dismantle darknet markets. This comes on the heels of the newly formed Opioid Fraud and Abuse Detection Unit, whose focus is opioid-related healthcare fraud.

While these efforts may help reduce the flow of illegal drugs, they will have to be highly innovative in their approach. Darknet markets have quickly recovered from previous law enforcement crackdowns and are more resilient than ever. Many are located outside U.S. jurisdiction, often with people in one nation, technology in another, and merchandise in yet another, making investigation and extradition very difficult.

In other words, defeating darknet markets is akin to eliminating a termite infestation when the nest is not on your property. New approaches will be needed, and addiction prevention and treatment become all the more important when the flow of illegal addictive substances cannot be readily slowed.

Darknet markets are playing an increasingly important role as a source of heroin and illicit fentanyl, the two key drivers in the opioid crisis. This is not surprising given the history of drugs online and the fact that opioid abuse and addiction usually starts with recreational use. A failure to recognize this -- exacerbated by efforts to shrink the supply of legal prescription opioids -- has hampered the response to the opioid crisis and is contributing to rising overdose fatalities.

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

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.

A Pained Life: Tough Luck

By Carol Levy, Columnist

For the first time in almost 40 years, two doctors said the same words to me, the words I have always dreaded: “Tough luck.”

Their words were meant to be kind, but the meaning was the same: There is no cure.

That is the last thing I want to hear.  The last thing most of us want to hear.

I am a new patient of both doctors. They do not realize I am like a woman who fell overboard, clinging desperately to the side of the ship. I cling desperately to hope – the hope that someday, someone, something, will end the pain. It is what keeps me fighting.

It is that little sliver of hope, even after all this time, that there is an answer. And then I could work again. Do anything I want to do. And do it without pain.

For all intents and purposes, I have been mostly housebound for the last 39 years, except for 3 months in 1977 when I had my first and only completely successful surgery.  I got a job as soon as I was permitted. I made wonderful new friends. We went out every weekend and during the week too. It was glorious. And then, one day while at my desk, a trigeminal neuralgia pain tore into my temple. And my life was lost again to the demon pain.

I do get out of my apartment. I take a class 2 times a week at my local Y. I am active in politics and try to get to the  monthly meeting and other events. I go to the grocery, the bank and doctor's appointments. All of these make the eye usage and eye movement pain much worse, but I do them and get through them (sometimes with a little narcotic helper). But absent those times, I am home.

The pain comes even when I am doing nothing. Staying home does not give me control over it. But by staying in, I reduce the number of times I am actively inviting the pain to get worse. Little by little, unconsciously, I am miniaturizing my life, doing as few things as possible so I don't exacerbate the pain.

This is no way to live, so I still search.

My pain management doctor tries new medications. They have not helped so far. It does not stop me from continuing to up the doses, as prescribed, just in case. As he writes out the prescription he is clear: “Maybe one of these will reduce the pain but you can't expect more than that.”  

In other words, tough luck.

Meanwhile, my neurosurgeon has given me two last and final options. He can redo a procedure I had in 1980 that helped with the spontaneous pain (that could be triggered with the touch of a hair), until it failed 5 years later. Unfortunately, while doing the operation they removed bone in my neck. They took out way too much and my neck “fell down.” It is now held up with clamps in the front and back of the cervical spine, which are held in place by 12 pins.

Because of this, my new surgeon can’t go in where or the way he wants. It makes the outcome and risks much more unknown. There is only a 45% to 55% chance it will work, with a risk of paralysis among others. Almost equal odds.

The other option is worse, the odds are even: 50–50. Worse still, the operation is essentially psychosurgery. He would place a lesion in the frontal cortex of my brain. “You will still have pain, you'll just not perceive it as pain,” he explained.

So, what do I do? What do we do when faced with equally awful choices?

I honestly don't know.

I do know that learning to live with pain, what so many of us are told, is of no help when no one tells us how to do that. If they would, maybe “tough luck” would be an acceptable option.

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.

Vietnam Veteran: 'I'm Done Fighting'

By Gregg Gaston, Guest Columnist

My story is one of hopelessness. I am 62 years old and a navy Vietnam veteran. I did my time in Vietnam and was discharged honorably as a Chief Petty Officer in 1985 but did not retire.

I went to Kuwait as a logistics advisor for the Kuwait Air Force, stayed there for two years and then returned to the U.S. Desert Storm happened two years after that and I received a phone call wanting to know if I wanted to go back to support the Kuwait Air Force in efforts to retake their homeland. Back I went and stayed through 1995.

In 2002, I developed chronic back pain and had back surgery a few years later. The surgery went badly from the start and was not successful. The pain only grew worse and I was eventually diagnosed with peripheral neuropathy and failed back surgery syndrome. 

Then came the Veterans Administration, which diagnosed me with presumptive Agent Orange exposure. The VA would only pay for treatments for the myriad of things related to Agent Orange, such as pain meds for my legs and medications for high blood pressure. This medicine was prescribed through the local civilian pain management clinic.

I tried every combination of painkillers you can imagine, including but not limited to hydrocodone, methadone, gabapentin and morphine.

My doctor wanted to implant a morphine pain pump, but I refused. 

GREG GASTON

Time passed, and things got worse at the VA. A new voucher system, changing regulations, scheduling problems and constantly changing doctors took its toll on me -- as well as trying to differentiate between what happened during which war. At that point I fired the VA and embarked on my journey into privatized medical care. 

I was exposed to sarin gas during Desert Storm, so by then my ailments included chronic back and neck problems, peripheral neuropathy, post-traumatic stress syndrome (PTSD) and extreme blood pressure problems. No drug completely relieved the pain, but I would take anything that helped even just a little. Over the years my doctors kept admitting they knew I needed more, but pressure from the government and the insurance companies limited what they could prescribe. 

Now we're into the present day and recently my doctor dropped me from three 50mg tramadol down to one 50mg tramadol per day. TRAMADOL for God's sake! I promptly told him where he could stick his tramadol. 

My doctor and I previously had a talk when I was hospitalized with two strokes on the same day. My directives to him were very simple. If you're not going to treat my pain, you're not going to treat anything. With that I stopped taking all my medications. I tried to explain about quality of life, which at this point I had none. It seemed to go over his head. Hospitals now only treat you for why you are in the emergency room, and even though you're admitted that's all they're treating. 

I've given up and am waiting now to die. I've lived a great life and have no expectations of my quality of life improving. 

I'd like to thank the VA, the other government agencies involved, legislatures and my local doctors for putting all their efforts into making things tough on people that are addicted or need pain medication.  

They have a problem which they don't know how to solve, so they’re taking the easy way out by taking all the meds away from EVERYONE. Screw those who really and legitimately need them. 

Common sense is fast disappearing. I'm done fighting, but I'll always be proud of my naval service and of my service to the State of Kuwait. Good luck to us all. 

Greg Gaston grew up in south Jersey and now lives in Texas. He has two daughters, six grandchildren and two great grandchildren.

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.

When Medical Tests Don’t Find a Cause

By Crystal Lindell, Columnist

One of the things doctors always tell you is that it’s really, really good news when a test comes back all clear. When nothing shows up on the MRI, bone scan, ultrasound or blood work -- that’s a good thing.

But let’s be honest. It sucks.

As a chronically sick person, I find I go through phases. There’s the “Let’s try every treatment and get every test” phase, which is usually followed by the “Everything and everybody sucks and I’m never going to get better so I should just kill myself” phase. Then comes the “Okay, I’m in a good place again, let’s see if we can fix this” phase. Repeat for infinity.

I recently started dabbling in the “Let’s try every treatment and get every test" phase again, and it’s meant seeing new specialists, trying new treatments and getting more tests done.

But, as per usual, nothing ever shows up on any of the tests. And it is the most maddening feeling when you see that your upper abdomen is again declared healthy by a machine that knows nothing about the you, especially when being touched by said machine was so excruciating that you had to push the tech away mid-test.

I’m coming up on my 5-year pain-niversary soon. That’s half a decade now that I’ve basically lived my life feeling like I had a broken rib — about 15 percent of my time on earth spent feeling mostly like I’m actually in hell. And nobody seems to have any idea why.

My primary care doctor, who I love, recently told me he sometimes finds himself sitting around contemplating my situation and wondering what could have possibly caused such a random pain in a random place. My doctor. Who works as an internal specialist at a university hospital. This is the man who has literally no idea what is wrong with me.

And something is wrong with me. I wake up most days feeling like a cinder block is crushing my ribs and I can’t take showers without also taking hydrocodone. I plan my life around when it’s going to rain, because rain makes the pain feel like a semi-truck covered in butcher knives crashed into my right side. And I can’t wear any bras that have even a hint of underwire.

But despite all that, nothing ever shows up. Ever. My bones are healthy. My liver is healthy. My bile ducts are healthy. My blood is healthy. My muscles are healthy. Everything is always healthy.

Except that it isn’t.

And all those tests coming back all clear are enough to make you think you’ve lost your mind. Is it possible to literally imagine crushing rib pain? Have I actually made it all up in my head? Is this all just some sort of awful illusion?

Even my doctor doesn’t seem to know.

So in addition to the painful and expensive treatments and the daily toll of pain, I also have to deal with the psychological burden of constantly reminding myself that, yes, I am sane and yes, all of this is real.

It’s exhausting.

And if my calculations are correct, based on life expectancy and my bad luck, I probably still have many half decades ahead of me filled with the same thing.

You learn to cope. You learn to manage. You learn how to avoid flares. But it doesn’t get easier. The pain doesn’t get less painful. It’s always there, like a raging siren only you can hear — on repeat for infinity.

Which is why the most important thing you can say to someone in pain, any kind of pain, is and always will be three simple words — I believe you.

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

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

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

Does Genetic Testing for Opioid Addiction Really Work?

By Roger Chriss, Columnist

Prescient Medicine recently announced LifeKit Predict, a gene screening test to determine who is at risk for opioid addiction. The company states that it “can identify with 88% specificity that someone may have a risk for opioid dependency” and “provides assurance -- with 97% sensitivity -- that an individual may not have increased genetic risk for opioid dependency.”

Those are strong claims. The idea that medical conditions and behavior can be predicted by gene variants is appealing. But any such test has to answer two questions:

Is it possible in principle? And does it work in practice?

Genes and Behavior

The pathway from gene variant to behavior is very complicated. Research on the genetics of opioid addiction has found “evidence for genetic susceptibility to substance use disorders” in twin studies, but non-genetic factors are known to play a significant role as well.

Moreover, the connection between gene test results and clinically useful information is complicated. Genetic testing often finds pathogenic variants with no clinical significance. A person can be a perfect match for a rare disorder in the most advanced genetic test available but have no symptoms, so at a clinical level that person does not have the disorder. Only in a handful of cases does a specific gene variant lead to a precise fate: Huntington's disease is the standard example in textbooks.

Addiction is generally thought of in terms of the biopsychosocial model of medicine, as Maia Szalavitz explains in her book, Unbroken Brain.

“There are three critical elements to it; the behavior has a psychological purpose; the specific learning pathways involved make it become nearly automatic and compulsive; and it doesn’t stop when it is no longer adaptive,” she wrote.

The National Institute on Drug Abuse reports that “genetic factors account for between 40 and 60 percent of a person’s vulnerability to addiction; this includes the effects of environmental factors on the function and expression of a person’s genes.”

Thus, genes may play a significant role, but many other factors are also at work. A genetic test to identify an increased risk for opioid addiction is plausible in principle. But non-genetic factors make it tricky in practice.

Real World Performance

Prescient Medicine has not yet validated its product with large-scale testing in the clinical setting. There have been no clinical studies of efficacy, nor real-world reports of success or failure rates with the LifeKit Predict tool. These findings are important to know for effective use.

In research published on LifeKit Predict, Prescient acknowledges that “the use of genetic algorithms to determine predictive risk scores is still a relativey [sic] new science. Prospective, longitudinal studies are needed to better definne [sic] the breadth of the test’s importance."

A prospective trial of chronic pain patients with LifeKit Predict to see who develops opioid use disorder would be optimal. But for a variety of reasons, including ethical considerations, this test may not be practicable. Instead, Prescient could test people on long-term opioid therapy who did not develop opioid use disorder and compare the results with people who did develop opioid use disorder. Findings here would shed light on the validity of the 16 gene alleles that Prescient is using.

For now, Prescient is reporting on sensitivity and specificity. These two terms have a precise meaning in statistics, but the following medical example captures the essentials:

A molar (butterfly) rash is very sensitive for lupus but not very specific. It is rarely seen in any disorder other than lupus, so if a person has it, lupus should be suspected. But it is only seen in about half of people with lupus, so not having a butterfly rash doesn't mean you can rule out lupus.

But the sensitivity and specificity of LifeKit Predict in the ranges given by Prescient represent a significant risk for false positives and false negatives, potentially limiting the real-world value of the test.

GenomeWeb reported that Yale University professor Joel Gelertner, an expert in genetics and addiction, was skeptical that LifeKit’s “predictive power would hold up when applied to larger datasets, and argued that in the absence of better validation, physicians should not use this type of testing."

Further, LifeKit has not been compared with established tools for opioid risk assessment. The Current Opioid Misuse Measure (COMM-9) and the Opioid Risk Tool (ORT) are both simple and familiar instruments for evaluating the major risk factors for opioid use disorder.

Both COMM-9 and ORT are very inexpensive, easy to use, and give results quickly. By contrast, a gene test is expensive and requires weeks to get results. It is not clear at this point if a gene test offers any advantages over these existing instruments.

Opioid addiction risk is at present more readily assessed using tools that are already available and understood. Prescient has developed a novel and intriguing new tool, but still must prove its reliability in clinical settings before the costs and risks of such a test can be justified.

For now it is probably premature to expect this kind of genetic testing to be as useful as it would need to be to be adopted clinically.

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

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.

Opioid Medication Has Been a Godsend to Me

Susan Lay, Guest Columnist

I have been on pain medication for over 30 years, starting with Vicodin. My doctor at the time wasn't concerned about the hydrocodone in Vicodin as much as he was the amount of acetaminophen in it, as it could destroy my liver.

He sent me to an anesthesiologist, who has been my pain doctor for over 20 years. After all the nerve blocks, physical therapy, imagery, TENS unit, spinal cord stimulator, pain pump, etc., I was given Roxicodone. Afterwards, OxyContin was created and then time released OxyContin.

I couldn't tolerate them, so he gave me fentanyl patches (which were new on the market) with fentanyl lozenges for breakthrough pain. My insurance eventually denied the lozenges. The patches were wonderful because I had no feelings of being “high” like other drugs. They made it possible for me to continue working and have a life. I have used the patches since that first day and they've been a Godsend.

Subsys spray was prescribed for breakthrough pain about 6 years ago, but at $22,000 a month, my insurance only paid for a year.

I'm so fortunate to still have the same doctor, although he's getting older and will retire soon. My main issue has been with pharmacies. I live in a very rural area of California and about 2 years ago my regular pharmacy refused to fill any opioids due to DEA and other concerns. My doctor has continued to write scripts for me, but I found them extremely difficult to fill. All the pharmacies I tried, including Walmart, Rite Aid, Walgreens and Safeway, denied me. Some felt uneasy, would only fill a script for 2 months, or just plain would not fill them!

SUSAN LAY

I tried mail order prescriptions, but they eventually stopped. I tried a small pharmacy 2 hours away, but had to talk the pharmacist into it, after he requested 6 months of medical records and advised me they would only fill my prescriptions every 30 days, with no early refills for vacations.

All has been good this past year, although I don't know if my insurance will continue to cover my meds. I'm 70 and on Medicare Part D. I've never increased the amount of patches or strength I use. I have Dilaudid for breakthrough pain, which doesn't help much, but some. I do what many other pain patients do to get their medication: drive for hours to my doctor once a month, undergo drug tests, sign pain contracts, and use no alcohol. I must go to office if they call for a drug count.

I discovered withdrawal from the fentanyl patches isn't as horrible for me as it is for addicts who just want to get high. I've had to go without for 5-6 days a few times, when the pharmacy was closed or I couldn't get to the doctor. My doctor explained that those in real pain are wired differently and withdrawal is usually easier. He did give me a script for methadone if I'm ever in that position again.

I feel extremely lucky to have a doctor who actually cares enough to help his patients. His contract says if any patient must go off opioids (for missing an appointment, using alcohol or whatever) he will assist us through withdrawal so we don't suffer.

It's the insurance and pharmacies that are causing us so many problems. Does anyone in other states have these issues? Marijuana is legal in California and we're a progressive state, yet even in my small rural area we're having major issues. Several pharmacies have closed, due to scrutiny by the DEA and other government involvement. It's not worth it to be constantly going through records and double-checking the way they do things.

Insurers and pharmacists have more power than doctors. Even with an honest and necessary prescription, they continue to over-ride doctors’ decisions. Pharmacists refuse to fill for quantities doctors have written, even when insurance agrees with that quantity. When a doctor speaks to the pharmacist, it makes no difference. When did pharmacists become doctors? The same goes for insurance companies that now refuse to pay for prescriptions they've covered for years.

I just don't get it. I'll do anything I can to fight FOR chronic pain patients and AGAINST those who don't give a damn about us and think if you use opioids you're a drug addict!

Susan Lay is a retired nurse and day care operator. She lives with chronic shoulder and knee pain.

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.

Why I Am Closing My Pain Practice

(Editor’s note: Patient abandonment is a serious and growing problem in the pain community. Thousands of patients have been discharged by doctors who have grown fearful of treating chronic pain and losing their medical licenses for prescribing opioid medication. We were recently contacted by a nurse practitioner, who offered her perspective on this disturbing trend. The author asked to remain anonymous.)

I am a nurse practitioner who has been in the field of pain management for the past 4 years. Prior to that, I spent years as an intensive care unit nurse and in primary care as an advanced registered nurse practitioner (ARNP).

Working with chronic pain patients has been the highlight of my professional career. I absolutely love my job and about 99% of my patients. I have had two complaints about me made to the Washington State Department of Health, both of which accused me of prescribing too much opioid medication to my patients. Both complaints were investigated by the state and I was found to be practicing within the standards of care -- and essentially told to continue. Which I did.

Then the Seattle Pain Centers closed in 2016, leaving thousands of untreated pain patients in the Puget Sound area. I inherited some of their patients. I felt like I had been "vetted" by the state, and believed that if I continued to do everything according to the law, I would be safe from any legal action.

In my practice, we fight ALL THE TIME for our patients, against the state, insurance companies, pharmacies and even the patient's families sometimes (when they don't understand). I'm not afraid of a good fight, because I have seen patients’ lives turned around when they are finally given the correct amount of opioids. I believe in opioid therapy.

Of course, all the tools in the box should be used, and I refer routinely to physical therapy, interventional pain specialists, surgeons, acupuncturists, chiropractors and others, in addition to prescribing opioids for pain.

Now I find how naive I have been. I have been to national conferences to learn more about pain management, and have heard the top doctors and researchers talk. One of these giants, Dr. Forest Tennant, was recently raided by the DEA. With Jeff Sessions as Attorney General, there is apparently more money being allotted to these raids and more are promised in the future. I also went to a website called "Doctors of Courage" and learned more about the DEA.

My interpretation of the facts is that it doesn't matter if I practice legally anymore. The DEA will look at my prescribing patterns, and tell me that I MUST have known that the ONLY reason any patient would get that much medication is if they are selling it on the street. And therefore, I am a "drug trafficking organization.” The Justice Department takes over the case and the provider is prosecuted.

If convicted, which seems to be the case recently, the provider becomes a felon and serves a prison term. Medical license is lost, time is served and because it is a "drug crime," asset forfeiture law may be used to confiscate everything I own.

'My Fear Is Very Real'

I am married, with a daughter still at home. I cannot do this to my family. So I am joining the legions of others who are closing their pain practices. I have just begun to tell my patients, and have had many, many tears, thoughts of both suicide and homicide, and one very special patient who told me that she will no longer be able to keep her service dog because she will be unable to care for him.

This whole thing is making me literally sick to my stomach. I've cried a million tears for my patients already, and I'm just beginning. I will be carefully weaning them all down to 90 MED per day over the next 6 months, or arranging transfer of care to anywhere the patient would like. What a joke that is -- there is no one else prescribing effective doses of opioids for chronic pain patients. If I am to be thrown in prison, it should be for that -- not for keeping them on therapy that enriches their lives.

I keep asking my husband to tell me that I am overreacting, but as wonderful and encouraging as he has always been, he is scared too.

Please tell all patients that what may have started merely as a provider being paranoid about his or her license has recently morphed into something truly dangerous for us. I will be absolutely no good to anyone, once locked up. If I can stay clear of the DEA's witch hunt, perhaps I can remain a voice of advocacy for pain patients. God help us all.

Please don't use my name if you post this. I can tell you, my fear is VERY real, and I don't want to call any attention to my practice right now. Thank you for understanding.

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.

An Open Letter to My Senator: CDC Has Killed Me

(Editor’s Note: Charles Malinowski is a 59-year old Paso Robles, California man who lives with Reflex Sympathetic Dystrophy (RSD), degenerative disc disease, ankylosing spondylitis, spinal stenosis and other chronic pain conditions.  He recently wrote this open letter to U.S. Senator Kamala Harris (D-CA). We thought his letter worth sharing with PNN readers.)

Dear Senator Harris,

The CDC has killed me!

Let me repeat that: The CDC has killed me!

I have a severe neurological condition that causes me unspeakable and crippling pain. Pain medication is literally the only thing keeping me alive. But with the issuance of the CDC’s short sighted, so-called voluntary opioid prescribing guidelines -- which are being rammed down the throats of medical providers -- my pain management doctor has cut me off of opiates.

For the last 10 years, I have been subjected to nearly every type of physical therapy, medical treatment and medication applicable to my affliction. The one and only thing that has ever had any demonstrable benefit in even temporarily suppressing my pain to a tolerable level has, unfortunately, been opiates.

In early October, I was told that I would have to stop taking either the oral opiates or the intrathecal opiates, as it was now illegal for a person to receive two different types of opiates via two different delivery methods concurrently. This was a major problem, as even with both oral and intrathecal opiates, my pain was severely under-managed to the point where I was almost completely bedridden. I left the house only to go to doctor's appointments.

When I was told that my pain management regimen - specifically the opiates - was going to be cut in half, even though my pain was already grossly under-managed, I spoke out about this.

CHARLES MALINOWSKI

As a result, not only was I cut off from the oral opiates, I got kicked out of the pain management practice where I have been a patient for more than seven years. The doctor said he didn't want to risk his license - but was perfectly willing to risk my life - over the CDC opioid guidelines.  These guidelines are supposed to be voluntary and are not supposed to take desperately needed pain medication away from legitimate chronic pain sufferers such as myself.

I expect that within 60 days, I will be dead from either heart failure or a stroke due to my body's inability to cope with the stress of the unrelenting pain. My neuropsychologist, who has been treating me for nearly 10 years, has consistently rated my level of pain as moderate to extreme, even while being medicated with both oral and intrathecal opiates, which I am now denied.

I'm not dead yet, but within 60 days I expect that the CDC will have effectively killed me. I honestly don't see myself being able to tolerate the pain any longer than that.

Congress, in going along with this blindly, will be explicitly complicit in this negligent homicide - or homicide by depraved indifference, take your pick - of one Charles James Malinowski, that being myself.

I would like to thank you, Senator, and all the rest of your colleagues for murdering me.

To help ease your conscience, it is not just me that Congress is complicit in murdering, but thousands, possibly tens of thousands of people in like positions.

Sincerely,

Charles Malinowski

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.

Stem Cells: Signs of Progress in a Rigged Game

By A. Rahman Ford, Columnist

The Wall Street Journal recently published an article on the use of stem cell therapies for knee problems, including arthritis.  Overall, the perspective of the piece was positive and it has several laudable aspects.  Physicians from large academic institutions, such as Harvard University and Stanford University, were interviewed to provide their opinions on the use of autologous stem cells derived from a patient’s own fat or bone marrow for certain painful orthopedic indications. 

The article rightly acknowledges the high patient demand for these autologous therapies. It also mentions how the U.S. lags behind other countries in offering them and the disturbing fact that this therapy is not covered by medical insurance.  The doctors who were interviewed also discussed how conventional approaches to osteoarthritis in knees – meniscus surgery, microfracture surgery, etc. – often fail to demonstrate long-term benefit.  These doctors, along with many others around the world, recognize that we need new therapies for orthopedic conditions.

Any positive portrayal of the clinical uses of stem cells should be welcomed. The unfortunate truth is that many potential patients are scared off by publications that focus their reporting on the alleged malfeasance of a few bad-actor stem cell clinics.  These same publications often neglect to cover the countless stem cell success stories from clinics in the U.S. and abroad. 

A focus on these promising results may help allay those fears and convince some of those fearful patients that stem cells are, in fact, a viable medical option for their chronic orthopedic pain. 

Less fear can lead to self-education and increased awareness of the safety and potential of stem cells.  Patients may even try stem cell therapy and become advocates.  In this sense, the WSJ piece is good public relations for stem cell therapies overall.

However, there is an unsettling undertone in the WSJ piece and media coverage in general of stem cells, which places too much emphasis on the opinions of clinicians from certain large institutions.  That diminishes the value of work being done in smaller stem cell clinics, which have been safely and effectively treating patients with orthopedic conditions for years. 

The unintended implication is that Harvard and Stanford physicians’ assessments are more legitimate because of the perceived prestige of their employers, and because they follow the guidelines that the FDA set forth for pursuing such treatments.  Of course, these institutions have millions of dollars in capital that it takes to conduct clinical studies and comply with these guidelines, while smaller clinics often do not.  We must take care to avoid creating or reinforcing illegitimate hierarchies that give some physicians more scientific authority than others, based solely on money, perceived prestige, or the ability to adhere to an unfair set of rules.

The sad truth is that the stem cell game is rigged.  The FDA’s rules regarding the use of autologous stem cell therapies favor those with more financial resources because they can afford expensive clinical trials.  Medical innovation cannot be strictly the domain of wealthy institutions with the finances to play on a tilted field.  The FDA’s “minimal manipulation” and “homologous use” regulatory standards for using stem cells are unduly burdensome and need to be relaxed for autologous stem cell uses. 

Recently, the FDA issued a warning letter to American Cryostem, a company involved in the manufacture of adipose stem cell products derived from a patient’s body fat.  In addition to manufacturing violations, the company was accused of violating the FDA’s “minimal manipulation” and “homologous use” standards. 

Setting the merits of the case aside, it is emblematic of the FDA’s crackdown on clinics that are much smaller than Harvard and Stanford, but which have been relieving patients’ pain with autologous therapies for years.  Their scientific contributions must not be subordinated or dismissed as illegitimate or inconsequential.

Stories of how stem cells are entering mainstream medicine can help us realize the goal of available, affordable stem cell therapy for all Americans.  However, valorization of those institutions with the means to “play within the rules” must not come at the expense of sounding the alarm that the rules themselves are patently unfair.

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

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

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.

5 Steps to Successful Advocacy for Pain Community

By Barby Ingle, Columnist

When it comes to advocating for the pain community, there are many roles to fill and many ways to go about doing it. There are patient advocates, legislative activists, social media activists and self-advocates.

I do a little of each and see that the most common mistake in activism is when patients join an organization without fully understanding the legislative process, how long it takes, and that there’s no guarantee that the desired outcome will be reached.

This is a topic I have seen on many of the upcoming pain conference agendas for 2018. I have been asked to speak at a conference about it, and while preparing my talk I realized that patients need more information on what it takes to build a pain organization into a successful change maker in public policy and legislation.

There is a 5-step process that I use to insure that a message is heard, supported, and goes from being an idea to actual legislation at the federal or state level. It takes a never-give-up attitude, with a big influx of time, effort, follow-up and social media support.

First, when crafting legislation to improve patient care or some other goal, you need to start by creating an implementation plan. This plan should outline a budget, strategies, leadership responsibility and timelines for goals to be met.

Second, the team leader must clarify the roles of the advocacy team and communicate that role to the rest of the leadership team, staff and volunteers. There are many personalities and challenges that will come up, so having the right people in place working together is very important.

Third, confirm that all team leaders express support for the initiative in meetings with legislators and their staffs. Allow additional time for the implementation of each step. Things tend to take longer than they should when working with teams and with government officials. The leadership should organize volunteers, create training resources, reach out to the media (and have patient stories ready for them), and provide effective speakers for hearings and press conferences. Be sure to include healthcare professionals and patients on your team.

Fourth, monitor the progress of the legislation closely. There are usually a lot of “hurry up and wait” situations and it could take years before a bill gets out of committee or comes up for a vote.  Sometimes mid-course corrections and negotiations are needed with legislators to gain their support and to keep a bill from dying, especially if a mandate or money is involved. 

Fifth and finally, carry out your strategies to achieve your goals. Your leadership team and volunteers should understand the bill and the legislative process, and be using marketing and social media tools to gain public support and awareness about why the legislation is needed. Staying motivated is critical to success. Keep your staff and volunteers involved and committed to making a difference in their own lives and the lives of others.

If you are a chronic pain patient and want to get involved, understand that this type of work takes physical action, but it doesn’t have to be all encompassing. Volunteer with advocacy groups or non-profits that are already working on legislative issues that interest you. See what fits you and volunteer to be a team leader or social media supporter. Share your story and why the bill is important to you, or even testify in person at a legislative hearing.

Be the change agent that we all need in getting proper and timely healthcare for the chronically ill.

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

More information about Barby can be found at her website.

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

A Pained Life: An Unexpected Gift

By Carol Levy, Columnist

This past Christmas I started thinking about a Christmas long past.

I lived in New York City at the time, but was spending the holidays at my mother's house outside Philadelphia. My family had been estranged for many years (especially from me), and for some reason one of my two sisters came to the house to spend Christmas with my mother and I.

The presents were opened, gifts from my mother to us and from us to our mother. I had nothing for my sister and expected nothing from her.

There were a few more boxes under the tree, but I assumed they were gifts for other people for later that day. To my amazement and consternation, my sister picked up one of them and handed it to me. “This is for you,” she said.

I took it with trepidation. “Why is she giving me a gift?” I asked myself while slowly removing the wrapping. I worked hard to keep my expression neutral as I pulled off the tissue paper and looked at the gift.

It was a blouse, bilious green decorated with farm animals, silos, barns and ribbons. It was probably the ugliest thing I had ever seen.

I smiled nicely, thinking what is her point? Why waste money to tell me via a blouse how much she dislikes me?

“Oh, thank you. This is.... really... nice,” I said.

My sister’s only reply was, “You're welcome.” There was nothing to indicate she meant it as the insult it sure as heck seemed to be.

Later on I walked into the kitchen. My mother was crying, “I can't believe she would give you something like that!”

It was awful. How mean, childish, and cruel. Such a waste of money merely to hurt someone, and for reasons never explained.

I returned home to New York. I hate the idea of wasting anything, so instead of throwing out the blouse, I decided I would use it as junk clothing, for painting or using solvents, etc. Nothing I could do to it would make it worse than it already was.

I had not taken it out of the box. I did so now and put it on. I looked in the mirror. To my amazement, it was adorable. In the box it was a horror, but somehow once I put it on, the ugly worked its way into cute.

I wore it until it wore out. I can't count the number of compliments I got, like “Boy, is that adorable.”

So what is the take away?

I didn't give the shirt a chance. I jumped on the meaning of it – horrid, mean and nasty. I didn't say anything to my sister or ask why she would give me something so ugly. I knew what it meant. I didn't need any help with the translation.

I think of this story sometimes, when someone I thought I had a good relationship with says to me, “Your pain can't be that bad” or “I've seen you climb the stairs, so I know you can.”

That’s like waving a red flag before a bull. Or a ringing bell to a boxer. How dare they! What does it take to get them to accept my pain and disability? My anger rises with my blood pressure. I am ready for a fight. 

But maybe I am jumping to a conclusion that never was.  Could they have meant something else? Maybe even an awkward kindness like, “I don't want you to have pain that bad. I don't want you to be so disabled.”

Maybe Ogden Nash said it best in his poem, “I Never Even Suggested It.” It was written about men and women quarreling, but I think the last line is what counts: 

In real life it takes only one to make a quarrel.

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.

How to Prepare for a Scheduled Hospitalization

By Ellen Lenox Smith, Columnist

No one enjoys the experience of being admitted to the hospital. Indeed, hospitalization can provoke extreme anxiety, which does not contribute to successful outcomes in any medical procedure.

Proper preparation before you go to the hospital not only reduces stress, but enhances the probability of a successful medical experience and helps promote a smoother healing process – all of which lead to considerable benefits to the patient.

For example, while recently preparing for a revised neck fusion, I realized that eating would become an immediate issue because nutrition is so important for healing. I don’t want to rely solely on hospital food, so I am preparing meals that I puree and freeze for my husband to bring to the hospital that I can sip through a straw.

Here is a list of other things I plan on doing:

• I plan to arrive with all of my compounded medications in their labeled containers, along with my regular pharmaceutical drugs, so I will not miss any scheduled doses.
• I will bring my entire medical folder, which includes my name, address, insurance coverage, contact information for my primary care doctor, pharmacy and nurse case manager, a list of medications and dosages, a list of medications I am sensitive to, previous surgeries, and my diagnoses.
• I will also include a list of Do’s and Don’ts to help keep the staff educated about Ehlers Danlos Syndrome and keep me safe when I might not be able to advocate for myself.
• I will pack my supplements that I will take after the surgery, so my body is allowed to quickly return to the routine it is used to.
• I will bring a special pillow that I sleep with that keeps my head in the correct position all night long (I use the Therapeutica Sleeping Pillow).
• I will give to the staff my list of food sensitivities and request to meet with the hospital dietician in hopes of getting food delivered that I can metabolize.
• I will pack t-shirts, loose flannel pants and warm socks so I can walk around the halls comfortably, instead of having to wear those lovely gowns you wake up from surgery in!
• I will bring a small bag of toiletries I prefer to use, along with a comb, brush and a toothbrush since what they provide always seems to be so skimpy.
• I will prepare a list of friends and family phone numbers for my husband/caregiver to contact after the surgery is completed.
• I will bring my Living Will and any needed directives.
• I will wear my medical alert bracelet and will ask that they please read what is on it!
• I will bring my own BiPAP breathing machine, so I know I am sleeping with the correct readings. I’ll also have the doctor write down the exact setting in case the hospital decides to use their own machine.
• I’ll bring things to do that are simple and peaceful that will help calm me, as well as items that will help re-stimulate the mind, such as Sudoku puzzles, adult coloring books and quiet music to listen to.
• I will pack enough food for my service dog to cover a few weeks, in case we stay longer than expected. I will also make sure I have her list of shots and credentials proving she is a legal service dog.
• With serious food sensitivities, I always pack snacks.
• I will bring paper and pen to jot down things I want to remember to ask the doctor when he arrives in the room. It is not a time to count on one’s memory!
• I will bring my cellphone and charger to keep connected to the world when back in a room.
• I will bring a list of my passwords in case I need to use the internet.
• I will contact my case manager nurse to alert her of the upcoming surgery, so she is able to help assist with in any snags that might come up and arrange for home healthcare when I’m discharged from the hospital.
• Many of my surgeries are out-of-state, so I make sure my primary care provider clears me for surgery in writing and sends a copy to the hospital. I’ll also bring a hard copy with me, in case they don’t get it or it is misplaced.

Anything a patient can do to simplify the hospitalization is worthwhile! For those of us with complicated and rare medical conditions, we must be prepared to advocate for ourselves. I have found that, for the most part, hospital staff does appreciate enlightened input from patients on best practices and how to keep us safe from harm.

As effective patient advocates, we need to educate others not only for our own safety, but to benefit future patients with our condition.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart 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.

4 N’s That Can Help Lower Pain Levels

By Barby Ingle, Columnist

I have covered 28 treatments so far in my alphabet series on alternative therapies that can be used in the management of chronic pain. I am now moving on to the N’s of pain management -- two of which I have tried and two that I learned about while researching this article.

Nerve Blocks

A nerve block is the injection of an anesthetic or anti-inflammatory drug into a nerve or group of nerves to relieve pain. I had this procedure 37 times over a 3-year period, starting in 2005. In my case, the injections were made in my neck into a group of nerves called the stellate ganglion. The injections did not take away my pain, but they lowered the intensity of it and helped me function better for a limited time.

As with most therapies for pain, nerve blocks are not a lasting treatment or cure. They are only a tool to manage pain and can help diagnose where the pain is coming from. Diagnostic nerve blocks are typical done to determine if a longer lasting treatment or procedure could be more successful in treating pain.

My first nerve block gave me pain relief for only about 3 hours, but it also showed my doctors that I had sympathetically maintained pain -- a form of Reflex Sympathetic Dystrophy (RSD).

Some people receive a few nerve blocks and experience months to years of extended pain relief. For me, it was only a few hours, but when the blocks were later combined with radio frequency ablations, I would get up to 20 days of pain relief. The nerve blocks also helped me avoid additional surgery and having to take daily medications.

There are many types of nerve blocks that can be performed on different body areas. Injections can be made in the face, eyelids, scalp, forehead, upper jaw, nose and palate, neck, shoulder, elbow and wrist, as well as the abdomen and pelvis. The procedure can be painful, so many providers sedate patients or give them a local anesthetic. I was sedated for all of my nerve blocks except one, where the IV failed. 

Nitric Oxide

Another treatment I am hearing some alternative providers suggesting is nitric oxide, a gas that relaxes muscles and improves blood flow, especially in the lungs. Some intractable chronic pain conditions, such as chronic orofacial pain, can be helped by taking nitrous oxide supplements. These supplements don’t actually contain nitric oxide, but provide amino acids and other ingredients that increase nitric oxide production in the body.

Nitric oxide helps lower blood pressure, increases circulation, and improves cardiovascular and heart health. Athletes have used nitric oxide supplements for years to build muscle, and increase speed and endurance. The closest thing I have tried to a nitric oxide supplement is creatine, back in the day when I was a college athlete and coach. I was using it in a totally different setting and was monitored by trainers and team doctors, but I wonder now if creatine helped me more than I understood at the time. 

It is important to note that taking too much creatine or nitric oxide supplements can be harmful. But if you can find the correct dose and are closely monitored, they can be useful tools to help with some of the secondary effects of living with chronic pain, such as chronic fatigue. Some of the most common side effects from nitric oxide supplements are an increased urge to urinate, reduced dopamine levels (which we need for sleep), zinc deficiencies, nausea and stomach cramps. If you are a diabetic type 2, this is probably not a good option for you because blood sugar levels tend to go up as nitric oxide levels increase.

Neurotransmitter Regulation

A treatment I have used over the years is neurotransmitter regulation, which is the use of antidepressants and anti-anxiety medication to help manage depression, anxiety and other mood disorders. I no longer need these types of drugs, as I was able to learn through psychological counseling new coping skills to better manage my moods.

Mood disorders can be caused by chronic pain, which disrupts the production of neurotransmitters, the chemical messengers that our bodies produce to regulate our nervous systems. The four major neurotransmitters that regulate mood are Serotonin, Dopamine, GABA and Norepinephrine.

Medications can be used treat mood disorders. For example, anti-anxiety drugs that are receptor agonists – such as Valium, Xanax, Klonopin and other benzodiazepines -- bind to receptors and mimic the way a natural neurotransmitter decreases anxiety.

I can’t stress enough how common it is for people in pain to develop depression and anxiety, due to the challenging situations we face with our physical, emotional and mental health. Don’t be shy about discussing these needs with your provider. We must address all aspects of living with chronic pain and our mental stability is important to maintain.

Nabilone

The final option I looked at in the N’s is nabilone, a medication that is approved for treating or preventing nausea and vomiting caused by chemotherapy. A few studies have shown that low doses of nabilone can also be effective in managing chronic pain from fibromyalgia and multiple sclerosis, although that would be considered an “off label” use in the United States.

Nabilone is a synthetic cannabinoid that mimics tetrahydrocannabinol (THC), the primary psychoactive compound in marijuana. According to the studies I’ve read, researchers believe that nabilone can benefit patients not only by reducing pain, but in improving quality of life. In a head-to-head trial of nabilone and a weak opioid medication, nabilone had similar pain relieving effects in patients with chronic neuropathic pain.   

Once again, I hope that I was able to share something new with you. I encourage you to be open-minded when it comes to using alternative therapies. Always talk with your provider to make sure you are on the same page and that everyone involved in your care understands the treatment plan and the options you are choosing.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

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