Wallowing in Pain

By David Hanscom, MD, Guest Columnist

One of the most powerful ways to bond with others is by sharing emotional or physically painful experiences.  It is common for people suffering from chronic pain to discuss it with their family, friends and colleagues.

Between searching for a cure and talking about it, a fair amount of their consciousness is focused on pain. But the unconscious brain, which pain is a part of, is much more powerful than the conscious brain. You can’t consciously fix or control it. But you can direct it. Your brain changes every second and will develop wherever you place your attention. The more you focus on your pain, the more you will reinforce it.

Many of us in the medical profession were trained to have our pain patients keep a diary of the pain. But it has now been shown in some studies (here and here) that a pain diary is often associated with a delay in recovery. Focusing on the pain and documenting it may only reinforce pain circuits.

One of the most powerful strategies we have seen in treating pain is when we don’t allow patients to discuss their pain with anyone – expect with medical providers. People can become so wrapped up in their pain that they lose themselves in it. They become their pain.

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I had no idea how much time patients spent discussing their pain until I asked them not to. For some, it felt like I had just dumped a bucket of ice water over their head.

They’ll say, “I feel shallow and phony by not sharing what is really going on with me.” That is a sure sign that he or she has become their pain.

We have witnessed several things occur when people successfully stop discussing their pain. The pain may not immediately abate, but they feel lighter.

For starters, do you really think your pain is that interesting to those who aren’t in pain? There is nothing that they can do about it and although they may sympathize, it is incredibly frustrating to repeatedly hear the same story.  Often my patients don’t appreciate the effect their story has on others. People that they enjoyed in the past drift away, furthering their social isolation.

And what about your poor family? They can’t escape as easily. Instead of you being a source of inspiration, peace, love and joy, you bring the whole house down. It isn’t a psychological issue. The effect occurs through mirror neurons, where you are stimulating the negative parts of the brains of those close to you.

Bonding with Pain

Another harmful aspect of repeatedly discussing your pain is that you will bond with those who are also focused on their pain. The bonds are deep and real and stronger than many human connections.

One extreme example of the strength of the need for social interaction involved a patient who we discovered was being violently abused by her boyfriend. We had to call the authorities. But she kept going back to him. One of my staff finally asked her why she put up with being beat up so badly. Her reply was, “It’s the only time that I have his full attention.”

You’ll be almost guaranteed to remain in pain if you are also contributing to another person’s suffering. One of the most basic parts of being human is giving back and that energy is almost impossible to connect to while you are in the abyss of pain. You are taking from those around you and not giving back.

Even deeper though is that the bond forged by pain is so strong that many don’t want to give up their pain. It’s the one greatest obstacle to healing. Being in a victim mode, in any realm, is so powerful that no one willingly wants to let it go. I run across this resistance multiple times per week. It took me many years before I realized that some patients had become addicted to being in pain and were resistant to change. If a patient doesn’t want to even learn the basic concepts behind solving chronic pain, there is nothing that I can do for them.

Our team has attempted to work with several online pain groups, where a lot of energy is spent on complaining about pain, circumstances and medical care. The complaints are generally legitimate, but little time is spent on discussing real alternatives. When we have suggested that there is a viable solution, we are quickly and consistently blocked.

We’ve also asked our patients to never complain or engage in pain behavior, such as groaning, grabbing their back, etc. If you are having a bad day at work or dealing with an unpleasant aspect of your pain, why bring it home? It is supposed to be your haven of safety and relaxation.

Don’t Share Your Pain

We have been surprised how difficult it’s been for some people to quit complaining.  It’s also been surprising how effective this simple strategy has been in moving people forward on their healing journey. At a minimum, their family is happier and everyone’s mood improves. It’s a great start.

Last week I had five different patients become free of pain. All of them had been suffering badly for many years and the change occurred within a couple of months. One person dramatically improved within a couple of weeks. All were beside themselves trying to express how excited and happy they were to be free of pain. Not discussing their pain was a significant step for each of them.

If you are one who feels like that you have to share your pain, then be honest with yourself about not wanting to give it up. It will save you and everyone else a lot of time and money not making the effort to help you heal when you actually don’t want to. Not sharing your pain is a simple beginning and will give you insight on where you are at with regards to healing.

Many people are incensed at the idea that they don’t want to give up their pain. The response is often that the medical profession just isn’t doing its job and fixing them. Whether that is true or not isn’t the point. The key is that you aren’t willing to learn the most recent concepts about overcoming pain. There isn’t any risk and you are already spending a good deal of time searching for an answer.

If you really think you aren’t attached to your suffering, then try this simple test:  Don’t talk about your pain.

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Dr. David Hanscom is a spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery. In his book Back in ControlHanscom shares the latest developments in neuroscience research and his own personal history with pain.

More information can be found on his 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.

Prescription Pain Creams Flagged for Medicare Fraud

By Julie Appleby, Kaiser Health News

Medicare pays hundreds of millions of dollars each year for prescription creams, gels and lotions made-to-order by pharmacies — mainly as pain treatments. But a new report finds that officials are concerned about possible fraud and patient safety risks from products made at nearly a quarter of the pharmacies that fill the bulk of those prescriptions.

“Although some of this billing may be legitimate, all of these pharmacies warrant further scrutiny,” concludes the report from the Office of the Inspector General for the Department of Health and Human Services.

In total, 547 pharmacies — nearly 23 percent of those that submit most of the bills to Medicare for making these creams — hit one or more of five red-flag markers set by investigators.

Those included what the researchers called “extremely high” prices; large percentages of Medicare members getting identical drugs — 16 of the pharmacies billed for identical drugs for 200 or more customers; “greatly increased” year-over-year billing — 20 pharmacies increased their billing by more than 10,000 percent; or having a single medical provider writing more than 131 prescriptions.

More than half of those pharmacies hit two or more measures — and 10 hit all five.

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One Oregon pharmacy, for example, submitted claims for 91 percent of its customers. A pharmacy in New York submitted 5,342 prescriptions ordered by one podiatrist, while a Florida pharmacy saw its Medicare billing for such treatments go from $7,468 in 2015 to $1.8 million the following year.

Many of the pharmacies are clustered in four cities: Detroit, Houston, Los Angeles and New York.

The report comes amid ongoing concern by Medicare officials about these custom-made — or compounded — drugs. In addition to questions like those raised in the report about overuse and pricing, safety has been a key issue in recent years. A meningitis outbreak in 2012 was linked to a Massachusetts pharmacy that did not maintain sterile conditions and sold tainted made-to-order injections that killed 64 Americans.

When done safely, pharmacy-made compounded drugs provide a legitimate option for patients whose medical needs can’t be met by commercially available products mass-produced by pharmaceutical companies. For example, a patient who can’t swallow a commercially available prescription pill might get a liquid version of a drug.

State boards of pharmacy generally oversee compounding pharmacies, and the drugs they produce are not considered approved by the Food and Drug Administration.

Rising Cost of Compounded Drugs

The new report focuses on concerns with compounded topical medications.

Medicare spending for such treatments has skyrocketed, rising more than 2,350 percent, from $13.2 million in 2010 to $323.5 million in 2016. Price hikes and an increase in the number of prescriptions written drove the increase, the report said.

It is not the first time the inspector general has looked at compounded drugs. A 2016 report found that overall spending on all types of compounded drugs — not just topical medications — rose sharply.

The U.S. Postal Service inspector general and the Department of Defense also have raised concerns about rising spending and possible fraud for compounded drugs.

In response to those previous reports, the International Academy of Compounding Pharmacists, the industry’s trade group, has said that legitimately compounded drugs “can dramatically improve a patient’s quality of life,” noting that proper billing controls need to be in place. The inspector general’s report in 2016, it added, found that “such controls are not in place.”

This report, which the compounding trade group has not yet reviewed, focuses on topical drugs and a subset of the 15,290 pharmacies that provide at least one such prescription each year. It looked at billing records from the 2,388 pharmacies that do at least 10 such prescriptions a year — providing 93 percent of all compounded topical drugs paid for by Medicare.

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Most of the prescriptions were for pain treatment, made from ingredients such as lidocaine, an anesthetic, or diclofenac sodium, an anti-inflammatory drug.

On average, those compounds were more expensive than non-compounded drugs with the same ingredients.

For example, Medicare paid an average of $751 per tube of compounded lidocaine, and $1,506 for the diclofenac, according to the inspector general’s report. Non-compounded tubes of those drugs averaged $445 and $128, respectively.

FDA Commissioner Scott Gottlieb recently outlined new efforts his agency is taking to oversee compounded drugs in the wake of legislation passed by Congress following the meningitis outbreak.

“The FDA is inspecting compounding facilities to assess whether drugs that are essentially copies of FDA-approved drugs are being compounded for patients” who could otherwise take a product sold commercially, he said in a statement issued on June 28.

Gottlieb also said the FDA plans to make more information available to patients and their doctors about compounded topical pain creams, including information about their effectiveness and any potential safety risks.

Not being effective is a safety risk, noted Miriam Anderson, a researcher with the inspector general’s office who helped write the report.

The report urged the Centers for Medicare & Medicaid Services to clarify some of its policies to emphasize that insurers can limit the use of compounded drugs by requiring prior authorization or other steps. The agency concurred with the recommendations, according to the report, including the need to “follow up on pharmacies with questionable Part D billing and the prescribers associated with these pharmacies.”

Anderson said the inspector general’s office is continuing to probe the issue.

“We will investigate a number of leads on specific pharmacies and prescribers who were identified as having these questionable patterns,” she said. “Whenever we see that kind of increase in spending, it raises concern about fraud, waste and abuse.”

Kaiser Health News’ coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

Why ‘The Bleeding Edge’ Gave Me a Panic Attack

By Emily Ullrich, Guest Columnist

If you haven't seen it yet, you've likely heard the buzz about The Bleeding Edge on Netflix. This documentary should be seen by every adult in America, not just chronically ill or chronic pain patients.

The Bleeding Edge gives insight and affirmation to those of us who have dealt with the medical system a little too much and demonstrates how important self-advocacy is. If you haven't seen it yet, don't let what I'm about to tell you deter you. I've seen it twice now. The first time I watched it, I had a full-on panic attack because it reminded me of the infuriating ordeal I went through dealing with the American medical system.

I wanted to watch the film again, hoping I would be able to watch it more objectively. I made it through the second time without a panic attack, but I was still yelling at the screen.

The film covers an array of medical device errors and malfunctions. But more importantly, it also delves into the mistakes and oversights that the FDA, CDC, American Medical Association and others have made (and continue to make) at the expense of our health because it's more lucrative to make us sick than it is to ensure our safety.

One of the main topics in The Bleeding Edge is the autoimmune disorders that many women developed after the implantation of the Essure birth control device. I was especially stricken by this story.

My first experience with chronic pain was pelvic pain, due in part to endometriosis. I started having my periods when I was 11 years old, and by age 12 was literally passing out because of the severe pain I had when menstruating. I saw doctor after doctor, and every one of them told me the same three things:

“This is normal.”

“At least part, if not all of this, is psychological.”

“Take ibuprofen and a hot bath, and you'll be fine.”

Of course, they were all wrong.

By age 19, I went to probably my twelfth doctor. She decided, in her infinite and culturally superior attitude, that since I had two sexual partners in my lifetime that I must be promiscuous. And if I continued this reckless behavior, she would not be able treat me and would be forced to tell my parents. When I told her I didn't need to be judged or lectured, she clucked her tongue and shook her head, as though I was a lost cause.

Many years and irresponsible, uncaring and uninformed doctors later, at age 31, I went to a doctor who told me I probably had endometriosis and performed a laparoscopic procedure to confirm this diagnosis. The procedure was also supposed to remove it and I was supposed to feel better. It didn't.

As I aged, it got worse. And as I moved around the country, I had to go through the degrading and exasperating experience of finding a doctor who believed me and believed in endometriosis. Many OB/GYN's and MD's still do not.  Even now, I see doctors on occasion who refer to it as a “garbage pail diagnosis.”

The Mirena IUD

At age 36, I was finally referred to a pelvic pain specialist. He believed in my pain and suffering and wanted to help. I cried because he was so nice.

After a fourth endometrial ablation surgery, he suggested the Mirena IUD as a long-term solution to my problem. He said it would not only prevent pregnancy but would be effective in reducing or eliminating my periods. As I lay back to have the IUD inserted, he assured me that it would not be painful that I would merely feel a “slight pinch.”

I never felt ANYTHING as excruciatingly painful. The doctor mistakenly punctured the fundus of my uterus. So, he casually penetrated me again with the same invasive tools, pulled the IUD out, opened a new one and attempted to place it. My uterus simply spat it back out at him. He said, laughing, “Your body doesn't seem to like this! Wanna try it again?”

I should have listened to my body and said no. But he tried again and finally placed it. For the next nine months. I bled profusely every day and the pain was worse than ever. I called and visited the doctor numerous times throughout these months, and every time he assured me the bleeding would stop and I should be patient.

Finally, I marched into an appointment and demanded he remove it. He did, and although I had pain for the next few days, it finally got a little better.

My point in all of this is that I now have about 15 chronic pain conditions. And with each one, I have a similar horror story. I feel a connection to the women who had the Essure device and who later developed autoimmune illnesses because of it. I will never know if any of my ongoing list of health problems stemmed from the Mirena, but I do know that after my bad experience with it and a few other attempted medical devices, my body doesn't respond well to foreign objects.

We are all different chronic pain snowflakes, if you will, and different treatments work for different people. However, as one goes through the process of repetitive ER visits, hospital admissions and doctor's appointments, we get to know what we can and cannot tolerate pretty well.

The pain patients' mantra of “Be Your Own Best Advocate” could not be hammered home better than it was watching The Bleeding Edge. The film struck a deep chord within me about the irresponsibility of our government, medical companies and doctors, as well as their willingness to suspend disbelief if it is easier and more financially convenient, even if it's at the cost of people's lives.

It is very much like the movement to stop the use of opioids, a proven and mostly safe class of pain medication, while encouraging the use of under-tested drugs with bad side effects that are often prescribed off label to treat conditions they were never intended for. It doesn't matter anymore if the patient has a better life or not. It only matters that the medical system drains our wallets and souls, while selling theirs.

Still, after all of this, we have to fight. We have to because no one else is going to do it for us. We have to do our own research and educate ourselves about medical devices and treatments.

As The Bleeding Edge demonstrates, when you can buy stock in healthcare companies, when government became controlled by corporations, and when doctors get paid for using and recommending their products, we lost the ability to trust them. 

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

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.

Magnetic Gel Could Someday Treat Chronic Pain

By Pat Anson, Editor

Magnet therapy has been used for thousands of years to treat arthritis, inflammation and other chronic illnesses. Today therapeutic magnets can be found in bracelets, shoes, clothing, mattresses and dozens of other products, sold by companies that claim magnets relieve pain, improve blood flow and even flush out toxins.

It's a controversial theory and there is little science to support the medical use of magnets. One critic has even called magnet therapy “a billion-dollar boondoggle.”  

But maybe there’s something to it after all.

UCLA researchers have demonstrated that a gel-like material containing tiny magnetic particles can be used to relieve chronic pain caused by disease or injury. In a study published in the journal Advanced Materials, they say the biomechanical force of magnets can be used on damaged cells to help them heal.

"Much of mainstream modern medicine centers on using pharmaceuticals to make chemical or molecular changes inside the body to treat disease," says principal investigatorDino Di Carlo, PhD, a UCLA professor of bioengineering. "However, recent breakthroughs in the control of forces at small scales have opened up a new treatment idea -- using physical force to kick-start helpful changes inside cells. There's a long way to go, but this early work shows this path toward so-called 'mechanoceuticals' is a promising one."

Di Carlo and his colleagues used magnetic particles inside a gel to manage cell proteins that control the flow of calcium ions. The proteins are on the cell's membrane and play a role in the sensations of touch and pain. When damaged by injury or disease, these “excitable” neuron cells continually send pain signals.

"Our results show that through exploiting 'neural network homeostasis,' which is the idea of returning a biological system to a stable state, it is possible to lessen the signals of pain through the nervous system," said lead author Andy Kah Ping Tay, a recent UCLA doctoral graduate. "Ultimately, this could lead to new ways to provide therapeutic pain relief."

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To make the magnetized gel, UCLA researchers used hyaluronic acid, a gel-like material found naturally in the spinal cord and brain. Hyaluronic hydrogel can also be produced artificially and is used in cosmetics and other beauty products as a filler and moisture barrier.

The researchers put tiny magnetic particles into the gel and then grew a type of primary neural cell -- dorsal root ganglion neurons – embedded inside the gel. In laboratory tests, they applied a magnetic field to generate a pulling force on the particles, which was transmitted through the gel to the embedded neurons.

The researchers found that the magnetically induced pulling led to an increase in calcium ions in the neurons. When they increased the magnetic force steadily over time, the neurons adapted to the continuous stimulation by reducing the signals for pain. In effect, researchers created a form of neuromodulation using magnets -- an old theory put to a new use.

In addition to treating pain, researchers say the magnetic gel could be modified with different biomaterials to treat heart disease, muscle disorders and other health conditions.

The UCLA research was funded by a New Innovator Award grant from the National Institutes of Health.

Indiana Paramedics Use Laughing Gas to Treat Pain

By Pat Anson, Editor

They say laughter is the best medicine, but an Indiana fire department has taken that cliché a step further by using “laughing gas” to treat emergency patients.

This week paramedics in the Indianapolis suburb of Fishers became the first in the state to use nitrous oxide for pain management when a patient suffers a broken bone, sprain or some other injury.  The goal is to reduce the use of prescription fentanyl – a potent opioid – and run the risk of a patient becoming addicted.  Fentanyl is currently used to manage pain in about 10 percent of Fishers’ emergency transports.

“It really comes down to the number of overdoses that we respond to. Fishers is not immune to that problem and we're trying to look at any and all ways that we can prevent people becoming addicted to opioids," Fishers Fire Captain John Mehling told WTTV. “If we can take even a little piece of that out of the care for the patients that we deal with, that might be that one step that keeps them from becoming addicted.”

Fire officials say patients must be alert enough to administer the gas themselves by holding a mask over their face while under the supervision of a paramedic. It takes about 2 to 3 minutes for the nitrous oxide to reduce pain and anxiety.    

“This is an effective and responsible adjustment to the care of our patients without the introduction of opiates into their system when possible,” said Fisher Fire Chief Steven Orusa.

Nitrous oxide has long been used to manage pain during dental procedures and is commonly used in European and Australian ambulances. It’s use by paramedics in the United States is relatively new.

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Laughing gas is also making a comeback in some U.S. hospitals, where it is offered as an alternative to epidurals for labor pain. St. Joseph’s Regional Medical Center in New Jersey has incorporated nitrous oxide into its “Alternative to Opiates” program, along with dry needles, nerve blocks and music therapy. St. Joseph’s has drawn international attention for significantly reducing the use of opioids in its emergency room, but is rated as one of the worst hospitals in the country by patients, who complain of poor pain care and long wait times.

Although nitrous oxide is considered safer than opioids, it has a long history of being abused for its euphoric effects. The gas was first used in “laughing gas parties” 200 years ago in Great Britain and is still used today by recreational drug users. When inhaled without oxygen mixed in, nitrous oxide can cause blood pressure to drop suddenly and lead to fainting and heart attacks.

Do Cultural Activities Reduce Risk of Chronic Pain?

By Pat Anson, Editor

Lose weight and get regular exercise are two health tips we’ve all heard before. But has anyone told you that going to a museum or concert could reduce your risk of developing chronic pain?

It’s true, according to a novel study published in the Journal of Pain.

Researchers looked at data from a 10-year study that tracked the progression of pain in over 2,600 older adults living in England. None of the participants suffered from chronic pain at the start of the study, but after ten years over 42 percent had experienced moderate to severe chronic pain.

Women (60%) were more likely to report chronic pain, along with those who lived alone, had less education, less wealth, slept poorly or were depressed. No surprise there, as many studies have found those conditions are often associated with chronic pain.

Researchers also wanted to know how often people exercised or participated in social events, such as community groups (political parties, trade unions or sports clubs) or cultural activities (visiting museums, art galleries or concerts).

Interestingly, moderate physical exercise appeared to have no effect on the incidence of chronic pain, but regular vigorous activity such as stretching and endurance training reduced the risk of developing pain, especially when it was combined with cultural activities.

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“This study also found evidence that psychosocial factors may be protective against the development of chronic pain, in particular engagement in cultural activities such as going to museums, art galleries, exhibitions, concerts, the theatre or the opera,” wrote lead author Daisy Fancourt, PhD, a senior research associate at University College London. "It is notable that the odds ratios for cultural engagement were directly comparable with those of vigorous physical activity, suggesting a reduction of 25-26% in risk of chronic pain incidence."

Fancourt and her colleagues believe that going to a museum or concert provides not only gentle physical activity, but psychological benefits that come from social engagement and having positive cultural experiences.

“Notably, these positive psychological benefits have not been found consistently for community group membership, which could explain the differences in association with chronic pain found in this study. Indeed, it is notable that for participants who experienced widespread pain, only psychosocial factors, not physical factors, were found to be risk-reducing,” said Fancourt.

The study was observational in nature and does not prove that cultural experiences can prevent chronic pain. But unlike dieting and exercise, it does suggest an alternate way to lower the risk of chronic pain that most people would find enjoyable.  And maybe that's the most important lesson.

"This study is the first to explore simultaneously potential physical and psychosocial protective factors for the development of chronic pain in older adults. Our results demonstrate that both vigorous weekly activity and regular cultural engagement appear to reduce risk of incident chronic moderate-severe pain," the researchers concluded.

Obese Adults More Likely to Have Chronic Pain

Another way to reduce your risk of chronic pain is to maintain a healthy weight, according to a recent Washington State University study. Researchers there looked at data from 9 large studies conducted in different countries to calculate the odds of chronic pain among adults with an overweight body mass index (BMI).

They found that adults with a BMI of 25 or more, which is considered overweight or obese, were 14 to 71 percent more likely to suffer from chronic pain than those with a BMI below 25.

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“Previous studies have shown that weight gain often precedes the development of chronic pain by many years, so I think our job as medical providers is to educate our patients early on and say, ‘You have a high BMI, your risk of one day developing a chronic pain condition, in addition to heart disease, is much higher,’” says Teresa Bigand, a doctoral student in the WSU College of Nursing.

“I think we need to do a better job of educating overweight people about their risk of potentially developing a chronic pain condition.”

More than 69 percent of the U.S. population and 1.9 billion people worldwide are overweight. For those who are already overweight and suffering from a chronic pain, Bigand says it’s not too late to take action. Research shows people who lose the largest amount of weight have the largest drop in their pain intensity.

“Essentially, weight loss is the best thing to do, however some patients aren’t quite ready for that,” Bigand said. “Patients with the highest and most severe levels of pain intensity struggle the most to lose weight. In those cases, we have to think about how we can help patients get their other symptoms under control that might be exacerbating the pain before we can start thinking about treating their overweight or obese status.”

A recent University of Michigan study, published in The Journal of Pain, found that obese participants who lost at least 10 percent of their body weight had less overall body pain.

“It’s been known for some time that people who are obese tend to have higher levels of pain, generally speaking,” says Andrew Schrepf, PhD, a research investigator at Michigan Medicine’s Chronic Pain and Fatigue Research Center. “But the assumption has always been the pain is going to be in the knees, hips and lower back — parts of the body that are weight-bearing.”

Schrepf and his colleagues found that losing weight not only lowered pain levels in the knees and hips, but in unexpected areas such as the abdomen, arm, chest and jaw. Study participants who could reach the goal of losing 10% of their weight also reported better mental health, improved cognition and more energy. Men in particular showed improvements in their energy levels.

Modified Botox Could Treat Chronic Pain

By Pat Anson, Editor

Injections of botulinum toxin -- more widely known as the brand name Botox -- have long been used as a cosmetic treatment that reduces wrinkles by causing muscles under the skin to relax. British researchers say a modified version of that same neurotoxin could someday be used to treat chronic pain.

In a study published in the journal Science Translational Medicine, scientists reported that they had deconstructed the botulinum molecule and reassembled it with a strong opioid called dermorphin to make "Derm-BOT" – a compound that blocks pain signals from neurons in the spinal cords of mice.

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“Injected into the spine, Derm-BOT relieves chronic pain – such as that caused by nerve damage – and avoids the adverse events of tolerance and addiction often associated with repeated opioid drug use,” said co-author Steve Hunt, PhD, a professor in cell and developmental biology at University College London (UCL).

“It doesn’t affect muscles like the botulinum toxin used to reduce wrinkles but it does block nerve pain for up to four months without affecting normal pain responses. It really could revolutionize how chronic pain is treated if we can translate it into clinic."

So far, Derm-BOT has only been used on laboratory mice, so don't expect it to be available for humans anytime soon. Over a five year period, 200 mice were treated with a single injection of either Derm-BOT, SP-BOT (another modified botulinum molecule) or morphine. The behavior of the mice was observed to track their response to pain.

“Both SP-BOT and Derm-BOT have a long-lasting effect in both inflammatory and neuropathic pain model, successfully silencing neurons without cell death. We were impressed to see that one tiny injection was enough to stop chronic pain caused by inflammation and nerve damage for at least a month," said lead author Maria Maiarù, PhD, a research associate at UCL. “A single injection of Derm-BOT reduced mechanical hypersensitivity to the same extent as morphine."

Previous studies in rats and dogs show that injections of tiny amounts of toxic substances into the spine kill neurons responsible for chronic pain. In contrast, scientists say Derm-BOT does not kill neurons, is safe to manufacture and non-toxic. And although it is partially made with an opioid, it is not addictive and doesn't cause respiratory depression.

"Injected into the spine, Derm-BOT relieves chronic pain -- such as that caused by nerve damage -- and avoids the adverse events of tolerance and addiction often associated with repeated opioid drug use," Hunt said.

Botox injections are already used to treat conditions such as migraines, neuropathic pain, and some allergies. But those injection are made into the skin and muscles, not directly into the spinal cord.

Learning About Back Pain Helps Reduce It

By Steve Weakley

A new study published in JAMA Neurology shows that learning about the neuroscience of pain may help relieve some of it. 

Researchers have long understood that pain sensitivity varies from patient to patient, and there is a complex relationship between the mind and the body that influences how we experience pain. To explore that connection, researchers in Belgium divided 120 patients with chronic back and neck pain into two groups. A control group was treated with commonly recommended physical therapy and exercises.

The second group went through a program of “neuroscience education therapy,” in which they were given a very detailed explanation of what happens to the nervous system during chronic pain. Patients learned how neurons and synapses work, and how pain signals travel through nerve fibers, to the spinal cord and then the brain.

They were also taught the importance of self-care, ergonomics, stretching and fitness.

The patients were then given a series of challenging movements and exercises that gradually became more difficult and painful. They were encouraged to push through their pain, continue exercising and concentrate on functionality, not pain relief.

Treatment in both groups lasted three months, and the patients were re-evaluated after six months and a year. 

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Researchers say patients in the neuroscience therapy group showed markedly more progress than the control group.  They had significant improvement in their disability, a higher pain threshold, improved physical and mental functioning, and 50 percent less self-reported pain than the control group. That improvement continued even after one year.

“These positive effects can be attributed to the content of the experimental treatment as participants learn to put pain into the right perspective, to move regularly, and to be physically active. Consequently, participants probably feel empowered, whereas, previously, they viewed pain as a life-controlling factor,” researchers found.  

“The main message is: Don’t be afraid of the pain,” lead author Anneleen Malfliet told The New York Times. “We know that worrying and giving attention to pain ultimately increases it. Staying active and moving is better than rest when it comes to chronic back and neck pain.”

Low back pain is the most common cause of disability worldwide and it is the most often cited reason for missed work in the United States.  More than half of all working Americans experience back pain each year.

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).

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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.

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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.

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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.

Wear, Tear & Care: Second Thoughts About SpineGym

By Jennifer Kilgore, PNN Columnist

I wrote a story last year about an IndieGoGo campaign for the SpineGym, an exercise device that helps people alleviate lower back pain by developing their back and abdominal muscles.

The device sells for $198 and, according to the SpineGym website, is the most successful Finnish product ever to use international crowdfunding sources.

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INDIEGOGO

I received a complimentary version of the SpineGym to review, and I really, really liked it. The product itself is helpful, and I feel that it performs as advertised.

I haven’t developed a six-pack or anything, but it does seem to target some problem areas in my back that don’t get exercised enough by traditional means.

Then I started noticing some Tweets in which I’d been tagged. Thousands of people who invested in SpineGym or reserved it for loved ones are still waiting for their devices.

“Ordered a ‘spine gym’ via @Indiegogo in 2016, still have not received my ‘gym’ nor any answer. They have been anything but forthcoming, to the point of evasive. I am trying to just get an answer, but nothing but erroneous updates. Terrible,” said one Tweet.

“Bought mine for my dad. It will be two years in July. It would have helped him. Now too late,” said another Tweet.

SpineGym received an astonishing 928% in funding, almost $1.8 million. The campaign closed two years ago, and yet to date only about 200 of the 5,546 backers on IndieGogo and 2,255 on Kickstarter have received a SpineGym.

The company’s website still offers the product for sale and says that “SpineGym is used widely around the world to strengthen the core and to improve physical ability and well-being.”

‘Not Going to Put Up With This’

Meanwhile, angry backers have not received the product they were promised.

“If I hear nothing by Friday as I said, I’m putting a formal complaint in with my credit card company to get my money back,” a backer wrote on IndieGogo last week. “Not going to put up with this.”

While sites like IndieGogo are fundraising sites, not sale sites, the question must be asked: What happened to the $1.7 million raised on IndieGogo and the $460,000 on Kickstarter?

Why is SpineGym available for commercial sale but not available to backers, who’d provided money for the venture in the first place?

I sent an email to SpineGym’s customer service, asking what the problem is. Many of the individuals with whom I’ve corresponded on Twitter said they’ve tried emailing customer service and filing complaints, only to receive silence in response.

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INDIEGOGO

I received a response that same day. SpineGym's explanation (with no name attached to their email) was that the initial interest far overpowered their tiny team, and that this meant “re-designing the product, re-designing the manufacturing [sic] re-planning the chain of sub-contractors processes as well as the logistic chain.” 

They also said they are currently looking for an additional customer service representative to handle the “huge amount of questions” from backers. They do state, however, they are “100% sure” that backers will receive their products, though it is taking far longer than they’d anticipated.

There is little explanation as to why such overwhelming interest warranted the entire redesign of their product. SpineGym noted delays regarding additional manufacturing issues, namely the baseplates, which were substituted with a new laminate more resistant to scratching and dirt. The company says new production samples are under final tests “at this very moment” and, if they pass review, will be shipped to backers this month.

At present, backers have little recourse aside from contacting SpineGym’s customer service and opening a claim. IndieGogo and Kickstarter have no options available, given that the campaigns have ended and all the money raised have been disbursed to the company. Technically, the campaigns were successful -- very successful -- so it’s not a matter of capital. It’s a matter of principle.

Despite my best intentions, I recommended a product that swindled backers out of hundreds of dollars. There is no reason why a plastic mat with two swiveling arms should take this long to create, regardless of redesigns, revamps, or whatever else SpineGym claims.

I will keep an eye on this situation and will hopefully have a better report soon. I recommend that backers keep up the pressure.  

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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.

The Difference Between Pain and Suffering 

By Ann Marie Gaudon, Columnist

It’s very easy to increase your pain and suffering. That’s not a typo. Believe me, we do it all the time. 

In my field, we use the term “clean pain” to describe something that we don’t have any choice over. Clean pain is the biological pain that science just can’t seem to fix. My clean pain is a result of disease. Your clean pain may be a result of disease or injury, or perhaps a combination. In the context of chronic pain, clean pain is unavoidable.

Clean pain is influenced by many factors and culture is one of them. For example, some African women deliver their babies in total silence due to learned beliefs. Clean pain can also be influenced by context, such as athletes who feel no pain as they push through their training and competition. Only when it is over do they feel pain and get care.

Clean pain is influenced by anticipation and previous experience. For example, you tell yourself that it’s happened this way in the past, so it’s absolutely going to happen this way again. We catastrophize (“It’s going to be awful and I won’t be able to cope!”) or we ruminate and obsess over our pain thoughts.

Grieving over the past or imagining a catastrophic future are two long highways to hell for chronic pain patients. I’ve driven on both of them. It’s not a fun ride.

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Clean pain is also influenced by emotional and cognitive factors such as fear, anxiety, anger, depression and distorted thinking (“I will die from this pain!”). 

Dirty Pain

Clean pain is unavoidable within the context of chronic pain. However, what psychotherapy sees as avoidable, and completely within our control, is a second layer of struggling that we add to our pain. This second layer is called “dirty pain.” 

This dirty pain accumulates when we focus our attention on the negative thoughts and feelings about the pain, as well as the stories we tell ourselves (“I cannot live my life until I am pain free!”), and the rules we make up about the pain (“I cannot exercise in any capacity at any time with this pain”).

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Some of these beliefs have a bit of truth to them, while some are arbitrary with no evidence to support them. Yet we can come to buy into them hook, line and sinker. Let the suffering begin.

Just to be clear, we absolutely must try to help ourselves with medical treatment in an attempt to alleviate our clean pain. However, there comes a time when the pain will budge no more. When we’ve reached that limit, yet continually strive to control pain that is not controllable, our efforts then become maladaptive and we suffer even more.

This metaphorical “chasing your tail” is also added to the layers of dirty pain.

We are all allotted only so much time and energy. We have a choice: Spend this time and energy trying to change the unchangeable, or engage in activities and relationships that help give you a sense of purpose and well-being.  

The goal of therapy is to help pain patients increase their repertoire of behaviours, guided by what they see as important, their own goals, and what they value in their life. This is in direct opposition to a restricted, limited and socially isolated life where pain is lord and master. By helping people to change the way they experience their thoughts, feelings and pain sensations, there is an opportunity to drop the struggle with your pain and to connect to what really matters to you.

Therapy for chronic pain management is a tool, and a good one at that, especially within a multi-disciplinary setting where you also have access to a team of other professionals. Some people with mild pain do very well using just one or two tools. However, if you are moving toward severe pain, you will need to have a larger toolkit.

My own toolkit -- in alphabetical order -- contains diet, exercise, ice packs, lifestyle modifications (e.g. strategic scheduling of work), medications, psychotherapy, rest, and a support system of family members, friends, and colleagues.

Some tools help with my clean pain while others help with my dirty pain. They all work together so that I can disconnect from struggling and connect to what matters to me. It isn’t an easy thing to do – especially at first -- but it is doable, as countless others are doing it as well.

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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.

The Link Between Trauma and Chronic Pain

Ann Marie Gaudon, Columnist

It has long been accepted in my field that chronic pain is a frequent outcome of trauma. There is extensive evidence to suggest that people suffering from post-traumatic stress disorder (PTSD) report chronic pain with striking frequency regardless of the nature of the traumatic experience. You don’t need to have been diagnosed with PTSD to be negatively and chronically affected by trauma.

One strong and commonly referred to theoretical model explaining the connection between trauma and chronic pain is known as the Mutual Maintenance Model. A person may respond to reminders of trauma through stress response, which may include avoidant coping (trying to avoid your distress by zoning out with video games or drinking to numb yourself), fatigue and lethargy associated with depression, pain perception elevated by anxiety, and intrusive memories of the trauma itself.

These considerable mental demands limit one’s capacity to control or decrease their physical pain and have the opposite effect of exacerbating and maintaining pain. To put it simply, experiencing pain prompts memories of the trauma, and memories of the trauma prompt experiences of pain.

The end result is that a person is trapped in a vicious cycle whereby the symptoms of trauma and chronic pain interact to produce self-perpetuating psychological distress and physical pain.

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A second model, called the Shared Vulnerability Model, suggests that the interaction of trauma, psychological vulnerability (anxiety, loss of control over thoughts and feelings), and a lowered physiological threshold for alarm reactions all influence negative emotional responses, resulting in the development of PTSD and the co-occurrence of chronic pain.

This chronic arousal of the nervous system may be responsible for the symptoms of both PTSD and chronic pain. There is research which suggests that chronic pain and PTSD are not necessarily distinct from each other, but rather connected and overlapping. The fact that sympathetic activity (the gas pedal to your distress) is increased, and parasympathetic activity (the brake pedal to your distress) is decreased, both in general and in response to trauma-related stimuli, is one of the most robust findings within the PTSD literature.

Disastrous events can strike any of us, at any time in life, and no one is immune. Some events are relational such as a school shooting or a rape, while others are natural disasters like earthquakes or floods. After any distressing or life-threatening event, psychological trauma may set in. One may go on to develop extreme anxiety, depression, anger, or PTSD and may have ongoing problems with sleep, physical pain and even relationships.

Healthy ways of coping include getting support, avoiding alcohol and drugs, seeing loved ones, exercising, enhancing sleep habits, and other methods of self-care. Certainly not everyone with chronic pain has experienced trauma and vice versa. However, there is extensive research to show that PTSD and chronic pain are intimately connected.

Seek an experienced trauma therapist if you feel you are not coping well. Trauma therapy is highly specialized, takes place in healing stages at your pace, and works to re-wire what’s become maladaptive in your brain by laying down new and healthier neural pathways. Click here to see a YouTube video that explains that process.

The work will be hard and challenging, but the good news is that many people heal from trauma and go on to live rich and rewarding lives. Some offer inspiration to others who have also endured life-altering negative experiences.

People become sick and pained, and people also heal. Suffering can skyrocket, and suffering can also take a nosedive. You do the work as if your life depended on it, because experience tells us it often does.

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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.