Wear, Tear & Care: The Curable App

By Jennifer Kilgore, PNN Columnist

Nobody wants to be told that pain is in their head. If you’ve been in an accident like I have or suffer from a debilitating condition, that translates to: “This pain is your fault. You’re just lazy. If you tried harder, you wouldn’t be in pain.”

Pain is in your head. Pain is a signal that says your body is in danger, and for many people that switch never turns off. It becomes chronic, endless, crippling and traumatizing. This leads to a sort of fossilization in which we are scared to move, because movement hurts. Our lives become smaller, but the pain becomes larger until it consumes the entire world.

When my pain therapist suggested I try EMDR therapy (eye movement desensitization and reprocessing) for post-traumatic stress disorder, I resisted for two years. Why should I have to make a concerted effort to get rid of my pain and work through memories of crumpled metal and squealing tires? Why was it my responsibility to fix things when somebody else’s negligence was the cause of my injuries?

As always, it’s more complicated than that. My pain signals have coalesced over the past 15 years into a body-wide tangle of energy that never stops hurting. It spreads from my back up to my neck, down into my arms and legs, wrapping around my ribs. Pills are thrown into the void. Devices are worn. The pain remains.

I can’t even remember how I stumbled across the Curable app. I think it came up on a Facebook ad, though I do get many Google Alerts for this type of product. Either way, I now have it downloaded and pay for the annual subscription ($6.39 per month).

CLARA

The Curable app is like having a virtual therapist -- her name is Clara -- on my phone designed specifically for chronic pain. I can work through these memories in the comfort of my own home, on my own time.

As described in their FAQ: “Curable is an online pain psychology program. Modern research tells us that recurring pain is caused by multiple complex and interconnected factors. Treatments like drugs or chiropractic try to target some of the chemical or structural issues, but these issues are only part of the equation when it comes to recurring pain.”

Pain researchers have discovered that the way we act and think play a significant role in pain reduction. I’m not saying that people don’t have valid injuries -- I broke my back in four places and have two fusions in my neck -- but I know, deep down, that my level of pain does not make sense. There were structural abnormalities. Most of them were fixed.

What’s left?

The rest remains in my head, and I am quite curious to see what is actually pain and what part is catastrophizing, fear, anger and stress. Curable says that this cycle of pain can be “deprogrammed,” and the app trains patients to tease apart what is real pain and what is not.

The program is easy enough to use. It can be done entirely on a computer, tablet or phone, and it’s compatible with almost every device.

Clara, the virtual pain coach, interacts with you by a stream of text messages, and it honestly feels like I’m talking to a friend who just gets me. She sends information and leads you from one activity to another, offering resources, exercises and funny gifs to help you “reverse the cycle of pain going on in your brain.”

Each session is between five and 20 minutes, and lectures run about the same length. Some of them are difficult -- for instance, I’m resisting the “Identifying Your Stressors” exercise in which I have to free-write, simply because I don’t want to face that part of my brain. It’s hard. I don’t particularly like waging battle against a part of myself, no matter how unwelcome that part is.

Clara even noted that many users find the writing exercises difficult and avoid them in favor of the other activities, because who wants to commit to such a level of self-reflection?

The makers of the app know this, and they get how hard it is because all three of the founders suffered from chronic pain. That level of understanding makes all the difference.

Curable is designed for three weekly sessions, though any pace can be set. A survey of users showed that some reported a reduction to zero pain within three weeks of trying the app. Everyone’s pain experience is unique, however, and they acknowledge that “there is no correlation between the total number of exercises you complete… and when you will begin to experience relief.”

As they also note, “Racing through the program ‘to feel better faster’ will not work.” I’ve found that racing through is pretty much impossible, because facing all of these thoughts and memories is exhausting.

I’m very excited about this app. I think it will be a great complement to my EMDR therapy and can keep me on track when my therapist can’t. Clara even speaks to me in a way that only other pain patients do. She understands our language, and the relief from that is staggering.

You can try the Curable app for free here.

Jennifer Kain Kilgore is an attorney editor for both Enjuris.com and the Association of International Law Firm Networks. She has chronic back and neck pain after two car accidents.

You can read more about Jennifer 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.

FDA Approves First Marijuana-Based Prescription Drug

By Pat Anson, Editor

The U.S. Food and Drug Administration has approved the use of Epidiolex, the first drug derived directly from marijuana, to treat seizures caused by two rare and severe forms of childhood epilepsy, Lennox-Gastaut syndrome and Dravet syndrome.

Epidiolex is the first FDA-approved medication that contains cannabidiol (CBD), one of the active ingredients in marijuana. It does not contain tetrahydrocannabinol (THC), the chemical compound in marijuana that makes people high.

“This is an important medical advance. But it’s also important to note that this is not an approval of marijuana or all of its components. This is the approval of one specific CBD medication for a specific use. And it was based on well-controlled clinical trials evaluating the use of this compound in the treatment of a specific condition,” FDA commissioner Scott Gottlieb, MD, said in a statement.

FDA approval of Epidiolex is a major milestone for GW Pharmaceuticals, a British company focused on developing CBD-based medications. The company said Epidiolex would be available in the fall, but did not disclose the price. Some analysts have predicted it could cost as much as $25,000 a year.

Many oils and tinctures containing CBD are already sold online and in states were medical marijuana is legal, but the FDA has not approved any of them. The agency has only approved a handful of synthetic cannabinoids such as Marinol (dronabinol) to treat loss of appetite and nausea.

“We’ll continue to support rigorous scientific research on the potential medical uses of marijuana-derived products and work with product developers who are interested in bringing patients safe and effective, high quality products,” Gottlieb said.

“But, at the same time, we are prepared to take action when we see the illegal marketing of CBD-containing products with serious, unproven medical claims. Marketing unapproved products, with uncertain dosages and formulations can keep patients from accessing appropriate, recognized therapies to treat serious and even fatal diseases.”

Some children in clinical trials experienced side effects from Epidiolex such as liver toxicity, anemia and drowsiness, but an FDA staff report said the risks were “mild to moderate” and could be managed with warning labels. The staff report also found there was low risk of the strawberry flavored Epidiolex being abused.

“Today’s approval of Epidiolex is a historic milestone, offering patients and their families the first and only FDA-approved CBD medicine to treat two severe, childhood-onset epilepsies,” Justin Gover, GW Pharmaceutical’s CEO, said in a statement.

“This approval is the culmination of GW’s many years of partnership with patients, their families, and physicians in the epilepsy community to develop a much needed, novel medicine. These patients deserve and will soon have access to a cannabinoid medicine that has been thoroughly studied in clinical trials, manufactured to assure quality and consistency, and available by prescription under a physician’s care.”

While Epidiolex is only approved for the treatment of Lennox-Gastaut syndrome and Dravet syndrome, doctors will presumably be able to prescribe it “off label” for other conditions such as chronic pain.  

GW Pharmaceuticals also makes Sativex, an oral spray that contains both CBD and THC. Sativex has been approved in Europe, Canada, Australia, New Zealand and several other countries for the treatment of muscle spasticity caused by multiple sclerosis. In Israel, Sativex is also approved for the treatment of pain and chronic non-cancer pain.  

One Is the Loneliest Number

By Ann Marie Gaudon, PNN Columnist

Part of what makes pain "painful" is the feeling of being misunderstood and the feeling of aloneness.

"Nothing is quite so isolating, as the knowledge that when one hurts, nobody else feels the pain,” Robert Murphy wrote in his memoir, “The Body Silent: The Different World of the Disabled.”

When you combine a sufferer who sees only pain with someone who can't see it at all, a barrier often springs between the two.  Pain causes this barrier because it inverts our typical perspective. No longer able to reach out to others for work or leisure, pain patients turn inward and life becomes about self-protection. Something is wrong inside of us, so we must tend to it and ensure it doesn't get any worse. This is an evolutionary response for survival; it’s instinctive and quite normal under these circumstances.

Once patients are constrained in their daily activities, a large part of their social world and the emotional health that depends on it can quickly deteriorate. Relationships are arguably the largest part of what makes life worth living.  In contemporary Western society, our self-confidence and identity arise from social interactions.

But as chronic pain sufferers’ lives become more restricted and limited, they frequently experience an erosion of their former self-image without the simultaneous development of a new one.

For example, I have heard: “I was a nurse, a mother, a wife, a friend, a daughter, and a sister, but now all of that is gone and I am alone in a cage with my pain.”

When isolated and in pain, our mind can become our worst enemy. The collapse of one’s social world can result in feelings of anxiety, emptiness, loneliness, anger, sadness, grief, guilt and low self-worth.

All of this psychological stress (aka “dirty pain”) is a response to your physical pain (aka “clean pain”).

Stress is a complex cascade of physical and biochemical responses to strong emotional stimuli. Emotions are electrical, chemical and hormonal discharges of the human nervous system. When not processed in a healthy manner, they can generate or increase pain and illness.

People can and do help themselves. Some join groups. If possible, join a walking group for exercise. If you don’t like walking, join another. The point is not so much what the group is doing, but rather that you are in a social situation.

Online forums are another way that people connect, especially if one is mainly housebound. Online communication can help you feel not so alone with your pain.

Maybe it’s possible for you to open up your home to low-maintenance company. Host a popcorn and movie night, or it could be cards or board games. You do the choosing, including when it begins and ends. Start with a single and simple event to prevent over-exertion and see where it leads.

Remember, what’s important is that you are building and maintaining relationships. To the extent that it’s possible, stick with those who support you. This could mean family, friends or even a support group for your condition, which can be a platform to form meaningful relationships with people who understand you. By listening to each other, you both know that you are heard and that you are not alone.

Some folks make their pain more communicable and thus sharable through pictures, artwork or expressive writing. Oftentimes this helps to bring barriers down to help others understand how you are feeling. There are no rules, you choose your form of expression.

Finally, realize that it is not your fault that you live in a pained body. Adding self-blame to your list of challenges will only make things worse for yourself. Learn to ask for help when you need it. Asking for help is never a weakness but is an act of self-compassion. I work extensively with clients on self-compassion, most of whom are quite naïve about it. If beating yourself up were the way to better health, wouldn’t you be the healthiest person on the planet by now?

I also work with people to get realistic about their life and expectations. What can stay? What can go gracefully to make room for new ways of being?

People aren’t broken, they’re just stuck. It’s not always easy, but with new learning, adaptations and support, people also become unstuck.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit 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.

Women Most at Risk for ‘iPad Neck’

By Pat Anson, Editor

If you have neck and shoulder pain and regularly use an iPad or tablet device, there’s a good chance the two are connected. Especially if you’re a young woman.

A recent study of over 400 university students, alumni and staff found that 60 percent have persistent pain in the neck and upper shoulders – often caused by slouching or bending to watch their iPads or tablet computers. Over two-thirds (68%) said they experienced symptoms while using their tablets.

"Such high prevalence of neck and shoulder symptoms, especially among the younger populations, presents a substantial burden to society," said lead author Szu-Ping Lee, PhD, a physical therapy professor at the University of Nevada Las Vegas. His study was published last week in the Journal of Physical Therapy Science.

The top risk factor for “iPad neck” was surprising. Women were twice as likely as men to experience neck and shoulder pain during tablet use.

“Our study revealed that females and individuals with current musculoskeletal symptoms were more likely to be at risk for neck and shoulder symptoms,” Lee wrote.

“Certain postures during use were also identified as important risk factors, specifically sitting without back support and with the tablet in lap were significantly associated with symptoms during use.”

UNLV IMAGE

The most frequently reported symptoms were stiffness, soreness or aching pain in the neck, upper back, shoulder, arms, hands or head. Most of those surveyed (55%) reported moderate discomfort, but 10 percent said their symptoms were severe and 15 percent said it affected their sleep. Less than half (46%) said they stopped using the devices when they felt discomfort.

Lee says the findings concern him, especially given the growing popularity of tablets, e-book readers, and other devices for personal, school and business purposes. At PNN, we know that about 10 percent of our readers use iPads or tablets.

Almost half of the tablet users surveyed use their devices for three or more hours each day. Flexing the neck forward for long periods of time puts pressure on your spine, causing neck and shoulder pain. Sedentary behavior and bad posture while reading are also contributing factors.

Researchers say many students sit cross-legged on the floor when studying on their tablets. Interestingly, women were far more likely (77%) to use their tablets while sitting on the floor than men (23%).

Lee offered these tips to avoid iPad neck:

• Sit in a chair with back support.
• Use a posture reminder device -- small, wearable devices that beep to alert you when you're slouching.
• Place your iPad on a stand (rather than a flat surface) and attach a keyboard to achieve a more upright posture.
• Exercise to strengthen your neck and shoulder muscles.

"Using these electronic devices is becoming a part of our modern lives," Lee said. "In order to reduce the risk of developing long-term neck and shoulder problems, we need to think about how technology like tablet computer affects human ergonomics and posture."

My Opioid Dependency Turned into Addiction

By Jim Best, Guest Columnist

When I was in my early 40’s, I had an accident at work that injured the discs in my lower back. I tried physical therapy, but after three months of little improvement they performed a discectomy.

The surgery was successful and I had very little pain until a year later, when I re-injured the same area. I was taken to the hospital in an ambulance and a neurosurgeon decided I needed emergency surgery and performed a laminectomy. This time, the pain came back after less than six months. I was in constant pain (most days rated somewhere between a 6-8) and unable to work. 

The next ten years included numerous trips to various providers, including pain specialists. I was evaluated by orthopedists and neurologists, and informed I was not a good candidate for spinal fusion surgery due to my overall body structure. They took more than a dozen MRI’s and I was subject to painful spinal injections on a regular basis.

I was also given a discogram, which is an extremely painful diagnostic procedure involving the insertion of needles into the spinal discs. The pain was so severe from this procedure that I passed out. The results were “inconclusive.”

During those ten years I was also introduced to opiate medication. They started me off on Vicodin and I was eventually prescribed OxyContin by my regular doctor. I took relatively small doses to start, but it didn’t take too long before I was being prescribed larger and larger doses.

What I didn’t know was that the more I took, the more I thought I needed. This is known as opioid-induced hyperalgesia, a syndrome in which people can become hypersensitive to painful stimuli due to prolonged use of opioids.

Although at the time I was sure that had nothing to do with my case, now I see where it made perfect sense and I should have ceased my opiate use immediately. However, I continued to use for five additional years. 

JIM BEST

An important part of my story concerns my addiction to alcohol, which I stopped using in 2005. I was a stalwart member of AA up until 2015, when I had a relapse. I never really discussed my use of painkillers with other people because I was afraid they would think I might have a problem with pills. Of course, they would have been correct, but I fooled myself into thinking I was okay.

That is part of the self-delusion of any kind of drug use, but perhaps more so with opiates because they were prescribed by a doctor and because I felt I had a legitimate reason for using them -- a rationalization I maintained even when I was using far more than prescribed.

Looking back, I do not believe I should have ever been prescribed opioid medication due to my addictive personality. I don’t blame the doctor who prescribed them to me. I would tell her horrible stories of not being able to get out of bed without the pills, or how some days all I could do was sit in a chair and cry. I believe that as a physician (as well as a caring and compassionate human being), she was concerned with my pain and truly thought she was doing what was in my best interest.   

It’s important to make one fact clear: I was in pain. Although I certainly hyperbolized my symptoms to my doctor, girlfriend and a few others, I did have daily chronic pain. And I was dependent on the drugs to provide some modicum of relief.

There came a time, however, when the dependency turned into an addiction. I literally could not function without large doses of the drugs. I also began to abuse them by taking more than prescribed and taking them in non-prescribed methods such as snorting.

The end of my use came when I got busted by my doctor. She caught me in one of the myriad of lies I had to tell because I would run out of pills before the next prescription was due. She gave me a script for 10 Xanax and basically told me good luck.

I went through withdrawal for a few days and then, after almost ten years of sobriety, I started to drink again. Eventually, I ended up in treatment. I admitted to the counselors at the treatment center that opioids were also “sort of a problem.” Luckily, they saw through the lie and I was put on Suboxone. I still take the Subs because they help with the pain and I don’t have the urge to use anymore.

I still experience daily pain. Some days it is bad enough that I have to be very careful with how much I exert myself. But I manage to get by without the pills.

As an aside, I feel like the current restrictions being put on opioid medications are too extreme. Not everyone that takes them has a problem and by restricting them, as many states currently are, they are making life very difficult for the ones using them responsibly.

What other people do is their business. For myself, taking such medications is no longer an option. I hope this story helps someone. 

Jim Best lives in Minnesota.

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.

Did Chronic Pain Patients Help Elect President Trump?

By Pat Anson, Editor

Rates of opioid prescribing were significantly higher in counties that voted for Donald Trump in the 2016 presidential election, according to a new analysis published in JAMA Network Open.

Researchers at the University of Texas compared voting trends, census information and Medicare data for people who received opioid prescriptions for 90 days or more. Nearly 60 percent of U.S. counties that voted for Trump had an above average opioid prescribing rate in 2015. Counties with below average prescribing rates voted for Trump only 39 percent of the time.

The researchers cautioned that the study does not mean that chronic pain patients were more likely to vote for Trump. It’s more likely to indicate that economic, health and social problems that lead to opioid use – sometimes called the "epidemic of despair" -- played a role in Trump’s victory.

“Support for the Republican candidate in the 2016 election is a marker for physical conditions, economic circumstances, and cultural forces associated with opioid use,” wrote lead author Dr. James Goodwin, chair of geriatric medicine at the UT Medical Branch in Galveston. “This association is related to underlying county socioeconomic characteristics that are common to both chronic opioid use and voting patterns, particularly characteristics pertaining to income, disability, insurance coverage, and unemployment.”

The researchers created a map (above) showing counties with the highest rates of opioid prescribing in dark red, while a second map (below) shows counties that overwhelmingly voted for Trump in dark red. 

The maps have similarities, but they don’t align perfectly or prove a cause and effect relationship between prescribing and voting. For example, while Trump won unexpected victories in Michigan, Wisconsin and Pennsylvania, where opioid prescribing is high, he also won in North and South Dakota, where prescribing rates are relatively low. 

During the 2016 presidential campaign, Trump and Hillary Clinton both called for further restrictions on opioid prescriptions and expanded access to addiction treatment. Clinton also endorsed a proposed tax on opioid pain medication.

“Given that both candidates focused on opiate addiction as a major campaign issue, it is difficult to infer that opiate prescription rates are somehow linked with voting behavior based on the candidates’ respective campaign promises and/or platforms,” wrote James Rosenquist, MD, in an editorial also published in JAMA Open Network.

“These limitations aside, this article’s findings add to a growing body of literature showing the interrelationship between public health and society, including the all-important economic and political realms.”

The “epidemic of despair” was first documented by Princeton researchers Anne Case and Angus Deaton in 2015.  They believe that the reduced life expectancy of middle-aged white Americans is linked to substance abuse, unemployment, poor finances, lack of education, divorce, depression and loss of social connections.

"People who reach for an opioid might also reach for ... near-term fixes," Nancy Morden, PhD, a professor at the Dartmouth Institute for Health Policy and Clinical Practice, told NPR. "I think that Donald Trump's campaign was a promise for near-term relief."

Should I Be Trying to Pass as Healthy?

By Crystal Lindell, PNN Columnist

Recently my new boyfriend told me he could tell from the moment he met me that I took pain pills.

“It’s all in the eyes. They look weathered. Mostly because the pain medications affect your sleep pattern.”

“Wait. What? What does that even mean? So I look old?”

“I think it’s really attractive actually.”

Sure. 

I was a bit devastated to find out that my elaborate efforts to convince the world that I am indeed quite healthy had failed me. So much for my $48 concealer from Ulta. 

The thing is I look young and I’m relatively friendly, so people usually can’t tell that I almost always feel like someone is repeatedly breaking my ribs. And I confess that I often use this to my advantage. People at work are on a need-to-know basis.

Until I met my boyfriend, I rarely told guys about my chronic pain. And when I’m at professional events it never comes up.  Sometimes I feel a little guilty about this, as though I’m somehow reaping the benefits of being able-bodied while my actual body is falling apart.

Looking healthy means nobody ever questions my ability to get things done, show up or keep working.

But the other side of this is that when I actually need help, it’s a lot harder to get. Nobody wants to give up their seat in the waiting area for the young girl who looks like she could go out and run a marathon tomorrow. Well, fine, probably not a marathon, but I definitely look like I could easily walk a 5K.

And getting help lifting a bag, or even using a scooter at the store makes me look like I’m just some lazy blonde chick taking away benefits from the people who actually need them.

I recently covered three trade shows in three weeks for work, and the whole thing left me battered on the couch at home. But during that final week, when I finally was bold enough to just float the idea of using a scooter to get around, someone who doesn’t know about my health said, “Well that would be in poor taste.”

It’s so hard to know what to do in that moment. Do I verbally vomit up my medical history right then? Do I laugh like I’m embarrassed? Or do I just ignore it?

I chose to throw out a sentence about how I was actually in real pain and then dropped the conversation.

More moments like that are bound to come up though. And one day I will have to break down and actually use the scooter. When that happens, I’m sure I’ll get some nasty looks from people who just assume I’m too lazy to walk the trade show floor.

But I’m also sure that eventually people will be able to tell I’m sick just by looking at me. And honestly, I’m dreading that more.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile Ehlers Danlos syndrome. 

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.

A Third of Pain Patients Have Stopped Using Rx Opioids

By Pat Anson, Editor

Over a third of pain patients (34%) have stopped taking opioid medications because their doctor is no longer willing to prescribe them, according to a large new survey of American adults living with chronic pain.

Eight out of ten patients (84%) say there is an unfair stigma associated with chronic pain, and half said they have lied about or hidden their use of opioid painkillers from others.

“The rise of the opioid epidemic has had a significant impact on those living with chronic pain, and oftentimes the voice of this population has gotten lost. We wanted to shine some light on the experiences of chronic pain sufferers with this research,” said Shai Gozani, PhD, president and CEO of NeuroMetrix, which commissioned the survey.

NeuroMetrix is the creator of Quell, a wearable medical device that uses neurostimulation to relieve chronic pain. The company hired the market research firm of Vanson Bourne to interview 1,500 Americans aged 25 and older, who were suffering from chronic pain for at least three months. An equal number of men and women participated.

The interviews were conducted online in early 2018 -- two years after the Centers for Disease Control and Prevention released new guidelines that discourage the prescribing of opioids for chronic pain. Although voluntary and only intended for primary care physicians, the guidelines have been widely adopted by insurers, regulators and providers throughout  the U.S. healthcare system.

The survey found that most pain patients are cautious about their use of opioids. Sixty-one percent are worried about addiction, a little over half (51%) said they only take opioids when necessary, and 42% don't like their side effects.

The stigma associated with opioids impacts how some patients communicate with their doctors. One out of five (20%) downplay the level of their pain and 13% said they are more cautious when speaking with their doctor. Only 9% of patients said they emphasize their pain level.

Most patients want to try pain therapies besides opioids. Nine out of ten said they are actively looking for new treatment options and most had tried at least one alternative, non-pharmacological therapy.  

Most Widely Used Alternative Therapies

• 65% Physical therapy
• 65% Lotions, rubs and patches
• 44% Over-the-counter TENS
• 33% Doctor prescribed TENS
• 28% Yoga, pilates, meditation
• 21% Acupuncture
• 16% Medical marijuana
• 16% Cognitive behavioral therapy
• 15% Surgery, implantable devices

The two most common reasons for pain patients to seek alternative treatments is because they don't like the side effects of prescription drugs (43%) and they prefer to treat pain without medication (39%). A majority (59%) don't believe their doctor is completely informed of treatment options outside of prescription drugs.

“These results underscore the need for more research and treatment modalities to support those living with chronic pain, as well as a joint effort among care providers, innovators, government stakeholders and patients to expand the goals of pain treatment," said Gozani.

"If we shift focus to making the end goal of pain treatment about decreasing suffering and disability rather than exclusively pain intensity, we may open ourselves to new possibilities and treatments that will empower those with chronic pain to find relief and gain greater control over their lives.”

You can read the full report, “Flipping the Script: Living with Chronic Pain amid the Opioid Crisis” by clicking here.

5 Myths About Cannabis and the Opioid Crisis

By Roger Chriss, PNN Columnist

Cannabis has a glowing halo of health around it. Claims of medical efficacy abound, including a recent article in The Street that asks, “Can Legal Cannabis Help Slow the Opioid Drug Epidemic in the U.S.?”

Another article in The Charlotte Observer is more of a plea than a question:  "What’s it going to take for us to recognize the value of cannabis in combating the opioid epidemic?"

These articles perpetuate five key myths about cannabis. The opioid crisis requires a significant response, but enthusiasm needs to be tempered by fact.

“I think we need to be very circumspect in what we are expecting from cannabis with respect to the opioid epidemic,” Dr. Susan Weiss of the National Institute on Drug Abuse (NIDA) said at a recent forum at the Center for the Study of Cannabis at the University of California, Irvine.

We also need to be accurate. Cannabis has significant medical potential, but if we lose sight of facts, we may fall into one or more risky myths. 

Myth 1: Cannabis is Not Addictive

According to NIDA, 30 percent of those who use marijuana may have some degree of marijuana use disorder. In current parlance, a “use disorder” is a broad term that includes all forms of misuse, abuse and addiction. 

The World Health Organization estimates that about one of every eight cannabis users is dependent in some way. Since the U.S. has about twice the world average for cannabis use disorder, this puts the U.S. rate at an estimated 25%, close to the number from NIDA.  

“There should be no controversy about the existence of marijuana addiction,” Dr. David Smith, who has been treating drug addiction in San Francisco for 50 years, told The Pew Charitable Trusts. “We see it every day. The controversy should be why it appears to be affecting more people.”

Myth 2: There Has Never Been a Fatal Cannabis Overdose

In May, the Journal of Forensic Science reported on two fatal cases of chronic nausea and vomiting, apparently caused by persistent cannabis use.

Although cannabis has a very wide therapeutic window, it is not infinite. And cumulative effects become significant for regular users, including medical cannabis patients. There is extensive literature on non-fatal cannabis toxicity, along with increasing rates of unintentional cannabis intoxication among children.

In addition, Israeli pharmacists have been cautioning that “for older patients who suffer from cardiovascular diseases, use of the drug can lead to increased risks of blood pressure fluctuations, heart attacks, ongoing cardiac distress and even sudden cardiac death.”  

Myth 3: Cannabis Can Treat Chronic Pain

In the wake of the 2017 National Academies report on cannabis, a number of major reviews and meta-analyses have been performed. A recent review in the journal Pain concluded that “it appears unlikely that cannabinoids are highly effective medicines" for chronic non-cancer pain. 

Cochrane came to similar conclusions in two recent reviews, one on cannabis for fibromyalgia and the other on cannabis for chronic neuropathic pain in adults.

In other words, cannabis may not be quite the panacea that some people hope. Instead, it may be like most other medications, effective in some people for certain conditions but not for others.

Myth 4: Medical Cannabis Reduces Prescription Opioid Use

A recent study by the RAND Corporation found little evidence that states with medical marijuana laws have reduced prescribing of opioid pain medication.

"If anything, states that adopt medical marijuana laws... experience a relative increase in the legal distribution of prescription opioids,” said Rosalie Liccardo Pacula, co-director of the RAND Drug Policy Research Center.

And rather than reducing opioid abuse, statistical analyses of drug databases found that people who use medical marijuana may be at higher risk for misusing or abusing prescription drugs.

Many studies on medical cannabis look at people in state medical cannabis programs. But such programs act as biased filters that select people who are most likely to benefit from medical cannabis or believe they already have. These patient self-reports are often inaccurate and have to be interpreted with caution.

Myth 5: Cannabis Helps Recovering Drug Addicts

Pain Medicine News reported on a study that found many people undergoing addiction treatment self-medicate with cannabis to relieve their pain, anxiety, depression and poor sleeping habits.  The researchers cast doubt on the effectiveness of that strategy, saying “cannabis may have an odd but unproductive effect on symptoms in some people.” 

Similarly, a new study in the Journal of Clinical Psychiatry found that: "cannabis use was associated with negative long-term symptomatic and treatment outcomes” for anxiety and mood disorders.

There are plenty of anecdotal success stories about cannabis treating chronic pain, addiction and other conditions, but the plural of anecdote is not data. That hasn’t stopped 29 states and the District of Columbia from legalizing the medical use of cannabis.

“Public policy is light years ahead of the science right now,” Ziva Cooper, a professor of clinical neurobiology at Columbia University told The State Journal Register.  “There seems to be this nationwide experiment on the effects of cannabis that is happening in the absence of rigorous studies.”

We have to treat cannabis with the same respect we give to any medication. Cannabis can be used medically, but we should be aware of the risks involved. And it is vital that myths be dispelled so that people who benefit from medical cannabis can use it safely and effectively. 

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.

I’m Ashamed of the U.S. Justice Department

By Drew Pavilonis, Guest Columnist

I was a federal law enforcement officer with the U.S. Department of Justice (DOJ) for 14 years. Hard work, a willingness to transfer, and a graduate degree brought fast promotions and a coveted position in management at a DOJ training academy just outside of Denver.

However, a rare type of brain tumor deep in the thalamus brought everything to a sudden halt after ten years in Denver. My doctors initially said the brain tumor was inoperable due to its sensitive location, but the tumor continued to grow, and I eventually flew to Phoenix to have a talented neurosurgeon perform the difficult surgery to remove it.

The thalamus and brainstem proved to be a very challenging surgery and I suffered permanent disability because of it. I spent several months as an inpatient at a neuro-rehabilitation hospital, relearning how to walk and speak, dress and bath myself.

The DOJ medically retired me because cripples can't be law enforcement officers. Fortunately, I had 19 years of federal service and was able to retire with a pension, which was a good thing since I was not able to work due to my significant disability. 

However, the suffering didn’t end there. I developed chronic, debilitating pain 3 years after the surgery.

DREW PAVILONIS

Fortunately, at the urging of my sister, I had moved close to Duke University Hospital in North Carolina for follow up medical care. The doctors at Duke hypothesized that my pain was due to scar tissue that formed in my thalamus after the brain surgery. The thalamus is the brain's pain center and my pain “switch” had been permanently turned on.

I was bedridden and prayed for death daily. The pain was so bad that I could not walk. I was taken by ambulance to Duke Hospital for a one week stay as an inpatient and was medically tested to the extreme. Eventually, the doctors determined that I had real pain and referred me to pain management. 

I was prescribed methadone, four times a day. Additionally, to fight the debilitating nerve pain that I also have, I was put on the maximum dose of gabapentin. The medications just allow me to live, much like diabetics need insulin to survive. I am always in pain, but the medications control it to a tolerable level.

I am able to travel internationally (I write this from my hotel room in Berlin, Germany), do volunteer work, and ride an outdoor wheelchair. However, I worry that that I will someday become collateral damage in this “war on opioids.”

I cringe every time I see a journalist cite the CDC report about opioid related deaths in America. That report was full of errors and incorrect by the CDC's own admission. Also concerning are the jack-booted tactics of the DEA, which attacks legitimate pain treatment as if doctors were responsible for all the heroin in the country.

Those rogue tactics have had a chilling effect on the practice of pain management and contributed to a growing number of patient suicides. Many chronic pain patients have taken their own lives because they could not get the appropriate medication that they so desperately need to live.

I never thought I would see human rights violations conducted by my own government against fellow Americans. It is unbelievable.  I no longer tell people that I am retired from the DOJ because I am ashamed of it. I just say that I’m retired from the federal government. That's sad.

Drew Pavilonis lives in North Carolina.

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.

Hydrocodone Rescheduling Fueled Online Drug Sales

By Pat Anson, Editor

Hydrocodone was once the most widely prescribed and one of the most abused drugs in the United States. Over 135 million prescriptions were filled in 2012 for hydrocodone combination products such as Vicodin, Lortab and Norco.

Then in 2014 the Drug Enforcement Administration rescheduled the opioid painkiller from a Schedule III controlled substance to the more restrictive category of Schedule II. The move was intended to reduce the prescribing of hydrocodone – and it quickly had the desired effect.  By 2017, only 81 million prescriptions for hydrocodone were filled.  

But while legal prescriptions for hydrocodone have gone down, the DEA’s 2014 rescheduling may have fueled a surge in illegal online sales of hydrocodone and other opioids, according to a new study in the British Medical Journal.    

“The scheduling change in hydrocodone combination products coincided with a statistically significant, sustained increase in illicit trading of opioids through online US cryptomarkets. These changes were not observed for other drug groups or in other countries,” wrote lead author Jack Cunliffe, PhD, a lecturer in data analysis and criminology at the University of Kent.

Cunliffe and his colleagues studied these online cryptomarkets – also known as the “dark web” – by using web crawling software that scans the internet looking for websites dedicated to online sales of illicit drugs. From October 2013 to July 2016, they found that sales of prescription opioids on the dark web nearly doubled, from 6.7% to 13.7% of all online drug sales.  

“Our results are consistent with the possibility that the schedule change might have directly contributed to the changes we observed in the supply of illicit opioids,” said Cunliffe. “One explanation is that cryptomarket vendors perceived an increase in demand and responded by placing more listings for prescription opioids and thereby increasing supply.”

‘Iron Law of Prohibition’

The increase in supply and demand wasn’t just for hydrocodone. The researchers also noted a growing number of online listings for more potent opioids, such as oxycodone and fentanyl. They attribute that to the “iron law of prohibition” – banning or reducing the supply of one drug encourages users to seek more potent drugs from new sources.

“We found that users were first buying oxycodone followed by fentanyl. Drug users adapt to their changing environment and are able to source drugs from new distribution channels if needed, even if that means by illegal means. In a context of high demand, supply side interventions are therefore likely to push opioid users towards illicit supplies, which may increase the harms associated with their drug use and make monitoring more difficult,” Cunliffe wrote.

As PNN has reported, business is booming for illegal online pharmacies. As many as 35,000 are in operation worldwide and about 20 new ones are launched every day. About half are selling counterfeit painkillers and other medications. Overdoses involving fentanyl and other synthetic opioids – most of them purchased on the black market – have also increased and now outnumber those linked to prescription opioids.

"The study’s findings are troubling but not surprising. As you’ve well reported, there are often unexpected and negative externalities resulting from well-intended anti-addiction interventions," Libby Baney, Principal, Faegre Baker Daniels Consulting and senior advisor to Alliance for Safe Online Pharmacies said in an email to PNN. 

"What’s worse still, when buying medicine online - whether from dark or surface web sellers - it is virtually impossible for the consumer to know if the product is what it claims (in this case, an opioid like oxycodone) or is a dangerous counterfeit laced with a deadly dose of elephant tranquilizer or poison. As too many victims have shown, even one pill can kill."

A recent study at the University of Texas Medical Branch also found an association between hydrocodone's rescheduling and increased opioid abuse.  Researchers found that hydrocodone prescriptions for Medicare patients declined after rescheduling, but opioid-related hospitalizations increased significantly for elderly patients who did not have a prescription for opioids.

The Other Victims of the Opioid Epidemic

By Katie Burge, Guest Columnist

Imagine the fear, frustration, helplessness and anger you might feel upon learning that your doctor cannot treat you to the best of his or her ability because they’re afraid of being arrested. 

I don't have to imagine that because I am a chronic pain patient with a degenerative spinal condition, plus severe osteoarthritis and fibromyalgia; each of which cause severe chronic pain 24/7. Combined, they can make simple tasks like getting dressed in the morning sheer torture.

Pain patients are the other victims of the so-called opioid epidemic, the ones the media usually don’t mention unless they're blaming us for other people's drug usage. 

Patients are being forced to live in agony and, as a result, increasingly lose their lives due to catastrophic medical events, such as stroke, heart attack and even suicide.

These can all be triggered by the physical, mental and emotional pressures of trying to survive with inadequately treated chronic pain.

Why?  Because politicians and bureaucrats (who refuse to admit the government is completely impotent at controlling the proliferation of illicit drugs) have managed to sell the public on the ridiculous premise that refusing medically necessary medication to one group of people will somehow alter the behavior of another group, and handily end America's drug crisis.

This approach simply does not work. Torturing vulnerable pain patients by refusing them life-giving medication will never make the slightest dent in the illegal drug trade because, sadly, people who want to get high will find something somewhere that will enable them to do so. 

Also, most of the prescription opioids that people abuse DO NOT come from doctors or pain patients. Less than one percent of legally prescribed opioid medication is diverted.  People in true pain are not going to suffer additionally by sharing or selling their medication. And doctors are not as careless with their prescription pads as the powers-that-be would like you to think.  

Nonetheless, the entities that control doctors’ licenses to prescribe opioids have yielded to political pressure by ordering doctors to either cut back on pain medication to the point that it's ineffective or stop opioid treatment altogether, regardless of patient need or outcome.

Inadequately treated chronic pain has stolen a great deal of my independence and quality of life, and though I hate the idea of taking pain medication at all, my greatest desire is to simply be able to fully participate in my own life again.  I will never be pain free, but I long to be able to play with my grandchildren, go to the theater or sit through an entire movie (and still be able to walk back to my car).

The mainstream media is also responsible for the ridiculous narrative that opioids have no legitimate clinical use and are immediately addictive. The result of this bias and hyperbole is that most folks believe outlawing the legitimate medical use of opioids can only be a good thing. Society teaches us that pain is somehow shameful.  We must “suffer in silence” and learn to control our pain without complaint or medical intervention. 

With such an abundance of myth and misinformation, it's no small wonder that actual facts about pain tend to get lost in the mix. Please allow me to share a few:

First, many overdose deaths are made to sound as though they were caused by a single prescription or even a single dose of opioids, when they are actually the result of a mixture of different medications, street drugs and alcohol. 

Second, chronic pain affects more Americans than heart disease, cancer and diabetes combined.  And studies have repeatedly shown that less than 4% of those who take opioid medication for pain become addicted.  They might develop a dependence or tolerance, but that occurs with many medications.

Physical “dependence” simply means that, if a drug or substance is stopped abruptly, the body will react by exhibiting withdrawal symptoms.  “Tolerance” occurs over time, as the dosage of some drugs might need to be adjusted as the body grows tolerant to its effects. Neither of these conditions is unique to opioids, nor are they necessarily indicative of addiction -- which is characterized by compulsive drug seeking behavior and use, despite harmful consequences.

Personally, I believe the question of addiction simply comes down to motive.  If your primary motive in taking opioids is to get high, you might be a drug addict.  If your only motive is pain relief and once that relief is achieved you do not increase the dose, you are not a drug addict.

Drug abuse is a complex social issue that has no easy fixes.  It should not, however, be confused with the medical management of chronic pain.  All life is precious and should be valued and protected, but not at the expense of others.

So, the next time your favorite TV show has a story line about someone going to the hospital and being transformed into a raving drug addict, or you hear yet another biased news story about opioids, do something about it.  You can help save lives by contacting the source of those fallacies and insisting that they tell the whole truth about the opioid crisis. Call them. Write a letter. Send an email.

We desperately need your voice, your prayers, your empathy and your compassion.

Katie Burge lives in south Mississippi, which she calls a “a veritable wasteland” for pain treatment. 

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.

Can Stem Cells Treat Lyme Disease?

By A. Rahman Ford, PNN Columnist

In a recent article in Scientific American, author Mary Beth Pfeiffer paints a startling portrait of Lyme disease in America.  She describes the “peril and menace” now associated with many forests, parks and even some backyards -- landscapes that Lyme disease-carrying ticks inhabit in ever-increasing numbers. 

“Although children are the most frequently diagnosed group and thousands of infected patients develop long-term infirmity every year, little has been done to curb the spread of the ticks,” Pfeiffer wrote. 

According to the article, the primary reason for the explosion in Lyme disease is that mainstream medicine continues to labor under the long-disproven myth that the disease is easy to diagnose and treat.  In truth, diagnosis is complex, and treatment options are woefully inadequate and sometimes even dangerous. 

According to the Centers for Disease Control and Prevention , Lyme disease is the most common vector-borne illness in the U.S.  It is transmitted by the bite of a blacklegged tick, or deer tick, that is infected with Borrelia burgdorferi or Borrelia mayonii bacteria. 

Deer ticks tend to thrive in woody or grassy areas.  Although most cases are reported from northeastern states like New Jersey, Connecticut and Maryland, states like Minnesota and Wisconsin have also reported cases. The geographic distribution seems to be expanding, along with an increase in the number of counties reporting Lyme cases.

In 2016, there were over 36,000 confirmed or probable cases of Lyme disease, although the actual number may be ten times as high. Common symptoms include a small red bump at the site of the tick bite, which can expand into a rash that forms into a bull’s-eye pattern.  Flu-like symptoms are also common. 

If Lyme disease is left untreated, multiple symptoms may emerge which may be dermatological, musculoskeletal, neurological and/or cardiovascular in nature.  Symptoms can include severe joint pain and swelling, meningitis (swelling of the brain), paralysis, numbness, weakness of the limbs and impaired muscle movement.  These symptoms can last for months or even years.  Because they tend to mimic the symptoms of other diseases, Lyme is often misdiagnosed.

There is no consistently reliable test for Lyme disease and diagnosing it can be tricky.  Oftentimes, patients do not present with a rash or any other common symptoms.  Laboratory tests, like enzyme-linked immunosorbent assay (ELISA), which are designed to detect bacterial antibodies, can give false positives.  And the Western Blot test, used to confirm ELISA results, has no standard criteria for interpretation.

Treatment for Lyme disease is likewise problematic.  The standard course of treatment is a 14 to 21 day course of oral antibiotics.  If the patient presents with neurological symptoms, intravenous administration may be preferred.  According to the Mayo Clinic,  “after treatment, a small number of people still have symptoms, such as muscle aches and fatigue,  the cause of these continuing symptoms, known as post-treatment Lyme disease syndrome, is unknown, and treating with more antibiotics doesn’t help.”

However, many holistic practitioners disagree, contending that the number of patients with post-treatment symptoms is far larger than estimated, and an extended course of antibiotics – or other treatment modalities – may be warranted.  Several of these physicians have had their licenses revoked, faced other disciplinary actions for ethics violations, or even been sent to prison.

Stem Cells and Lyme Disease

Given that the standard course of treatment fails many Lyme disease patients, alternative therapies are needed.  Stem cells may be a viable option to treat symptoms associated with Lyme disease syndrome because they are inflammatory in nature.  Mesenchymal stem cells, which may be readily obtained from bone marrow or adipose (fat) tissue, are known to possess immunomodulatory properties.  This means they could potentially lower inflammation and resolve the stubborn persistent Lyme symptoms that refuse to respond to conventional antibiotic therapies. 

KELLY OSBOURNE

Although the evidence for the efficacy of stem cell therapy in treating Lyme disease is largely anecdotal, the stories are compelling.

In one high-profile case, former E!’s Fashion Police host and Project Runway Junior judge Kelly Osbourne details her experience with Lyme disease in her memoir.  

In 2004, Osbourne was bitten by a tick from a reindeer at her father Ozzy’s 56th birthday party.  As a result of the bite, she suffered for a decade with “traveling pain” from a sore throat and stomach aches, which eventually led to a seizure on the set of Fashion Police.

 Osbourne was later diagnosed with epilepsy and prescribed drugs that, in her words, “turned her into a zombie.”  She went from taking Ambien to Trazodone to painkillers to anxiety medication.

After visiting an alternative medical practitioner, Osbourne tested positive for Lyme disease.  Rather than try to treat the disease with antibiotics, she went to Germany for stem cell therapy.  That therapy was a success.  In her words, “I was experiencing emotions and feelings again.” 

Osbourne initially kept quiet about what she calls her “cure” because she feared retribution from pharmaceutical companies.  She has since become an advocate for stem cell therapy.

Patients suffering from chronic Lyme disease need options.  Stem cell therapy could be one of them.

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.

A Bad Bill That Won't Fight Opioid Addiction

(Editor’s note: Last month, PNN reported on the “Post-Surgical Injections as an Opioid Alternative Act,” one of dozens of bills Congress is considering to combat the opioid crisis. HR 5804 would raise Medicare’s reimbursement rate for epidurals and other spinal injections used to treat post-surgical pain. The bill – which was lobbied for by doctors who perform the procedures – has drawn little public scrutiny and was rushed through a congressional committee after one brief hearing.)

By Denise Molohon, Guest Columnist

Raising the reimbursement rate for post-surgical spinal injections would dramatically increase healthcare costs and disability rates. This is based on historical research and medical evidence.

A harmful procedure should never be considered a “standard of care” by the medical profession. Yet that is what has happened with epidural steroid injections (ESIs) and Congress is going along with it under the guise of preventing opioid addiction.

“In the United States, more than ten million epidural steroid injections are delivered each year, a number that makes them the bread and butter of interventional pain management practices,” wrote Cathryn Jakobson Ramin, author of“Crooked: Outwitting the Back Pain Industry and Getting on the Road to Recovery.” 

The National Health and Medical Research Council of Australia warned in 1994 that the risk of a dural puncture of the spinal cord during an injection was at least 5 percent. It also cautioned that “particular care must be taken if attempting an epidural injection in patients previously treated by spinal surgery.”

In such cases, an epidural steroid injection (ESI) carries a very high risk of direct entry into the subarachnoid space, which can have catastrophic consequences to a patient, including the development of Adhesive Arachnoiditis, a chronic, painful and disabling inflammation of spinal nerves. I live with that condition, along with a growing number of other patients.

“The incidence of arachnoiditis has risen about 400% in the past decade,” says Forest Tennant, MD, Editor Emeritus of Practical Pain Management.

Between 2000 and 2011, there was a staggering 665% increase in the rate of lumbar and sacral epidural injections among Medicare beneficiaries. The data also show that there were enormous increases in spinal injections performed by physical medicine and rehabilitation specialists.

“We are doing too many of these, and many of those don’t meet the proper criteria,” Dr. Laxmaiah Manchikanti told The New York Times in 2012.  Manchikanti runs a pain clinic in Paducah, KY and is chairman of the American Society of Interventional Pain Physicians – which lobbied for HR 5804 and gave campaign contributions to its sponsors. He told The Times about 20 percent of doctors who perform ESIs are not adequately trained.

The growing use of spinal injections has not resulted in better care. Dr. Richard Deyo, a professor of family medicine at Oregon Health and Science University, told the The Times that “people with back pain are reporting more functional limitations and work limitation, rather than less.”

HR 5804 is more bad policy piling on top of an already failed campaign of opioid legislation -- much of it based on misinformation provided by the CDC -- that will perpetuate the tsunami of needless pain and overdose deaths. 

It needs to stop. Today. 

When profit is one of the major motivating factors of those seeking new legislation, those creating the legislation and those lobbying for it need to be questioned. Profitability should never play a factor in any treatment plan. However, it now seems to dominate the American healthcare system from diagnosis to testing to medication. 

This needs to change.

Medicine needs to be removed from the hands of lobbyists, PAC’s, and politicians and put back into the hands of the personal physician and his or her patient. It should be as individualized and unique as the medical needs of each patient. 

It truly is that simple. 

Denise Molohon was disabled with Adhesive Arachnoiditis after multiple spinal surgeries.

Denise is a patient advocate for ASAP, the Arachnoiditis Society for Awareness & Prevention. She and her family live in Indiana.

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.

Life After Pain Meds

By Dana Stephenson, Guest Columnist

It was a warm October afternoon in 1997 when my boyfriend called and asked if I wanted to go for a ride. Being from the northeast and motorcycle season was almost coming to an end, I said sure.

I often wonder how my life would have played out if I had just stayed home that day.

It started out as a normal ride with another friend, until the friend took off down a back road. Being just 18, my boyfriend took off after him. Long story short, the road turned and we did not. We slammed head-on into a telephone pole at 85 mph. The brakes on a motorcycle don't work so well when the wheels aren't touching the ground.

I was airlifted to a hospital and was in critical condition for several weeks. I spent 10 months in the hospital and had at least eight surgeries for a fractured spine and pelvic bone, pierced colon, and bruised heart, lungs and kidney. On the outside, I only had a few scratches but I was lucky to be alive at all, considering I wasn't wearing a helmet. 

Sadly, the worst was yet to come.  I kept asking the nurses, “Where’s Mike?” The nurses would act like they couldn't hear me. I understand now they were just doing their job, but at the time I thought I was going crazy.

Three days into my hospital stay, I asked my dad the same question. He gave a simple reply, four words that I'll never forget: "He didn't make it."

Not only was this my first experience with broken bones, surgery and stitches, it was also my first experience with death.

Pain medications were necessary, along with some counseling. I made it out of the wheelchair, off the walker, and then finally the crutches. The doctors called me a walking, talking miracle.

After a few years they transferred me to pain management and I slowly began developing a new problem. To people that didn't know my story, I appeared to be normal. Pharmacists always gave me the impression that they thought I was a drug addict. Why is this young, healthy-looking girl taking such high doses of painkillers? Over the years this began to bother me more and more.

Ten years after my accident, I finally decided to get a spinal fusion, hoping the pain would go away and the social judgement would finally stop. Well, that didn't go as planned. In the 10 years since my initial fracture, I had developed scoliosis. During surgery the doctor pulled so hard on my spine, trying to get it as straight as possible before screwing it in place, he ended up re-fracturing it. Now I was in worse shape than before. 

DANA STEPHENSON

Yet a new chapter of my life began. I had to accept that at age 29, I was going to have to file for disability. After a two-year struggle they approved my application, after first denying it because of my age. That's not even legal.

After 15 years of being in pain and treated like a junkie, I had enough. It was time to get off all pain medication. I went the Suboxone route and it definitely helped with the withdrawals. After a few years I quit that too.

Of course, I'm still in a lot of pain but taking the medications again is just not worth it to me. I moved away from home, so I wouldn’t be tempted to bum pills off my old connections.

I can honestly say I haven touched a pain pill in over 5 years. It's not easy, but I'm going to be in pain with or without the pills.

Dana Stephenson lives in Florida.

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.