Do You Have Dormant Butt Syndrome?

By Pat Anson, Editor

It’s probably not a condition or therapy they’ll be teaching in medical schools anytime soon.

But if Chris Kolba has his way, millions of Americans will get off their rear ends and start exercising their gluteus maximus, gluteus medius and gluteus minimus.

Those are the three muscles that make up the buttocks and sitting on them all day long can lead to back pain, hip pain and knee injuries -- what Kolba calls “dormant butt syndrome.”

“The entire body works as a linked system, and a lot of times when people come in with knee or hip injuries, it’s actually because their butt isn’t strong enough,” says Kolba, who is a physical therapist at Ohio State Wexner Medical Center.

“The rear end should act as support for the entire body and as a shock absorber for stress during exercise. But if it’s too weak, other parts of the body take up the slack and often results in injury.”   

Dormant butt syndrome (DBS) refers to the tightness of the hip flexors and weakness of the gluteal muscles.

When gluteal muscles are weak, muscles and joints in the hip, legs and knees  absorb more strain during exercise, sometimes leading to injuries so severe they need surgery.

But it’s not just weekend athletes who should worry about DBS. Even people who live sedentary lives due to illness or inclination can suffer from it.

“It’s actually caused quite often by inactivity and the way we sleep,” Kolba said. “Sitting for periods throughout the day weakens the gluteal muscles and puts strain on other parts of our core, as does sleeping in the fetal position.”

Kolba says making an effort to stand and walk around as much as possible can help strengthen the gluteal muscles and avoid pain and injury in other parts of the body.

In this video news release, Kolba offers tips to a marathon runner who suffered a severe knee injury he blames on DBS: 

Experts say "Dormant Butt Syndrome" affects millions, caused by weak glute muscles (COLUMBUS, Ohio) - If you're one of the millions of Americans who suffers from hip, knee or back pain, experts say your butt may be to blame.

A Pained Life: Teaching the Reality of Pain

By Carol Levy, Columnist

Excedrin, which makes an over-the-counter pill for migraine sufferers, has a wonderful TV ad.

A sufferer wanted to show her mother what she sees and experiences when she has a migraine. Excedrin developed a simulator that does exactly that (click here to see it).

The mother puts on the device and sees the visual disturbances her daughter sees when she has a migraine attack. As she removes the device the mother turns to her daughter, hugs her and says, “I'm so sorry. I didn’t know.”

How wonderful, I thought. If only...

If only there was a way to simulate the pain of constant, intractable chronic pain.

If only there was a way to get our message across, and in a visceral way.

Too often we are told, even by medical professionals:

“It can't be that bad.”

"I had a sprained ankle so I get your pain.”

“It's all in your head. You just don't want to (go out, work, be a part of the family, the community, the world, etc.)”

It is common for a pain sufferer to write in the comment section of articles on chronic pain the following:  

“I wish doctors would have chronic pain, even if only for a day or two so they would get it.”

When I had the worst of my trigeminal neuralgia, I could not tolerate any touch to my forehead on the affected side. This meant I could not wash that part of my face or my hair. As a result I would get a big buildup of soap and dirt in the area which, because of a facial paralysis and my eye not being able to close well, caused eye infections.

The only way to clean the area was to put me under general anesthesia. The nurses and doctors were wonderful about it, the doctor having shampoo in his locker in case I forgot mine.

When someone asks me about the pain and they say outright or make expressions indicating they don't believe me, I trot out my general anesthesia anecdote. Then they get it. After all, why would a doctor or a patient take the risk of anesthesia without a real need to do it?

I recall a TV show, maybe it was Doogie Howser, MD, where medical students went through a simulation of what it is like to be a patient. They were given cloudy glasses to feel the disorientation of being unable to see clearly. They also put pebbles in their shoes to feel the discomfort of severe pain when you are trying to get around.

I had hoped maybe they did actually do this at a medical school somewhere, but no matter what words I put into Google Search, I could not find anything. The closest are programs where actors are hired to portray various illnesses to help teach students better diagnostic skills, insight and empathy.  But no actors had the role of being in chronic pain.

How can we teach the students?

I didn’t realize when I started writing this I would feel so frustrated by the question.  I guess I expected I would find a pithy answer.

Unfortunately, part of the answer is that students come from the general population, which often cannot accept the level of pain we feel. So they bring that skepticism and disbelief with them.

It would be unethical to put them in actual pain.

But maybe if we could show them the impairment, if we could find a simulator to allow them to feel the frustration of being unable to tie a shoe, go out in the slight breeze without the triggering of exquisite pain, or even walk, we too might too hear a “I'm so sorry. I didn’t know.”

And wouldn’t that be wonderful.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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

Opioids Provide Only ‘Modest’ Relief for Low Back Pain

By Pat Anson, Editor

Lower back pain may be the world’s leading cause of disability, but there is surprisingly little evidence about the best ways to treat it – including the use of opioid pain medication.

A new study published in JAMA Internal Medicine adds a little clarity to the issue.

In a systematic review of 20 clinical studies involving nearly 7,300 patients, researchers found evidence that opioid medications provide only “modest” short-term relief from lower back pain.

“In people with chronic low back pain, opioid analgesics provide short and/or intermediate pain relief, though the effect is small and not clinically important even at higher doses,” said lead author Andrew McLachlan, PhD, a professor of pharmacy at the University of Sydney in Australia.

Opioids were found to be no more effective than non-steroidal anti-inflammatory drugs (NSAIDs). About half of the patients involved in the studies dropped out because they didn’t like the side-effects of opioids or because they found them to be ineffective.

“Our review challenges the prevailing view that opioid medicines are powerful analgesics for low back pain. Opioid analgesics had minimal effects on pain, and even at high doses the magnitude of the effect is less than the accepted thresholds for a clinically important treatment effect on pain,” McLachlan wrote.

Although nearly a quarter of the opioid prescriptions written in the U.S. are for low back pain,  medical guidelines often recommend against it.

Whereas there is evidence for significant short-term pain relief, there is no substantial evidence for maintenance of pain relief or improved function over long periods of time without incurring serious risk of overdose, dependence, or addiction,” wrote Gary Franklin, MD, in a position paper  adopted by the  American Academy of Neurology.

Franklin, who is vice-president of Physicians for Responsible Opioid Prescribing (PROP), also helped draft the recent opioid guidelines adopted by the Centers for Disease Control and Prevention.

“Evidence is limited or insufficient for improved pain or function with long-term use of opioids for several chronic pain conditions for which opioids are commonly prescribed, such as low back pain,” the CDC guidelines state. “Several non-opioid pharmacologic therapies (including acetaminophen, NSAIDs, and selected antidepressants and anticonvulsants) are effective for chronic pain. In particular, acetaminophen and NSAIDs can be useful for arthritis and low back pain.”

A large study recently published in the British Medical Journal reached a different conclusion than CDC – finding that there was little evidence that acetaminophen – also known as paracetamol – was effective in treating low back pain. Another study published in The Lancet reached a similar conclusion.

Who should patients believe with all this conflicting advice?

Perhaps the best therapy can’t be found in a pharmacy or drug store.

A recent study published in JAMA Internal Medicine found that regular exercise and education about its benefits reduce the risk of developing lower back pain by as much as 45 percent.

“If a medication or injection were available that reduced LBP (low back pain) recurrence by such an amount, we would be reading the marketing materials in our journals and viewing them on television. However, formal exercise instruction after an episode of LBP is uncommonly prescribed by physicians,” wrote Timothy Carey, MD, and Janet Freburger, PhD, of the University of North Carolina at Chapel Hill.

Over 80 percent of us suffer acute low back pain at least once in our lives, and about half will experience a recurrence within one year. 

It’s Not a Character Flaw to Need Pain Meds

By Jillian Drexler, Guest Columnist

I'm writing because I want to share the story of the “opiate and heroin epidemic” from the point of view of a chronic pain patient.

I was diagnosed with fibromyalgia last year. I also suffer from bulging and herniated discs in my neck and back (due to 3 car accidents that were not my fault), migraines, sciatica, and PTLS (Post Tubal Ligation Syndrome), just to name a few. More than likely the fibromyalgia was caused by the 3 car accidents, but I'm not certain.

I never imagined my life being what it is today. I don't know from one day to the next how I'm going to feel. I don't know if I'm going to feel just okay or like I've been ran over by a truck multiple times. It makes it hard to plan my day(s) out.

If the pain itself isn't draining enough, the uncertainty sure is. The pain drains you in every way imaginable -- physically, mentally, emotionally, socially and beyond. And then there are the times when you don't sleep. You can't sleep because of the pain and not sleeping triggers more pain.

I lost my insurance after returning to work after my son was born. I couldn't afford it through work, yet I no longer qualified for Medicaid. I feel that if I had insurance all those years, the severity of my pain could have been prevented or drastically reduced.

I am not prescribed any pain medications for my conditions. I know what medication helps my pain and helps me have some quality of life, but unfortunately I'm denied this medication.

I'm on an anti-depressant whose off-label use is to treat fibromyalgia, a seizure medication whose off-label use is to treat nerve pain, and a muscle relaxer. The muscle relaxer and seizure medication provide the most relief, but they don't completely help me. Over the counter pain medications don't scratch the surface of the pain I endure on a pretty much daily basis.

When I first called my doctor last fall to schedule an appointment, I was immediately told she does not prescribe narcotics and was asked if I was okay with that. I was fine with it because I didn't know what was wrong with me.

JILLIAN DREXLER

While seeing her, she mentioned referring me to a neurologist and pain management on two separate occasions. This hasn't happened yet because my insurance is still up in the air, even though I went through a period of unemployment and am currently working part time.  

What am I supposed to do? Never in my life did I think at 32 years old, I'd be in a fight to have some quality of life. Why is this happening? It shouldn't have to be this way.

At an ER visit earlier this year, the emergency room doctor insinuated I was a drug seeker. I'd just had gallbladder surgery a week prior and because I was still in pain and seeking relief, I was pretty much deemed a drug seeker.

A lot of these doctors are pegging the wrong people as drug seekers. Chronic pain patients didn't ask for their illnesses. We don't enjoy missing the pain-free life some of us had, having to limit the number of hours we can work or even quit our jobs, and missing events with family and friends.

Most of all, we don't enjoy being judged for needing pain medication in hopes of having a pain-free day so we don’t spend all our time in bed. This isn't life. It’s simply existing.  Some of these doctors forget about the Hippocratic Oath they were once required to swear by. They forget they work for us.

With the recent adoption of the CDC opioid prescribing guidelines, many chronic pain patients are left to suffer. Either they're like me and aren't getting any pain medication, their prescriptions are being cut, or they're being taken off of their pain medications cold turkey. This was supposedly been done to combat the opioid and heroin epidemic. I agree there is an issue with abuse and something needs to be done, but why does it have to be at the expense of chronic pain patients?

While the opioid and heroin epidemic are the focus, there's a suicide epidemic in the pain community that's being ignored. Some chronic pain patients are in so much pain, they feel the only way to stop their suffering is to end their life. No one should be made to feel that way. What ever happened to our right to life, liberty and the pursuit of happiness? The government is taking away the very rights it has an obligation to protect. 

I realize not every chronic pain patient benefits from or can take opioids. A lot of us benefit from marijuana. But that's not legal in every state. There has to be a better way! And, why wasn't a better way found before preventing us from getting the medications that help us to function? Why do the lives of opioid and heroin addicts supersede those of chronic pain patients?

The CDC guidelines say pain patients should find other ways to control their pain. The biggest suggestion I've come across is Tylenol. If Tylenol is all it took to relieve chronic pain, I don't think so many chronic pain patients would be ending their lives to stop the suffering. Tylenol just isn't meant to help with chronic pain.

What other options are there? Massage and acupuncture usually aren't covered by insurance. And, with a lot of chronic pain patients being forced to quit their jobs or work reduced schedules, most of us can't afford to pay for alternative treatments out of pocket.

So, we can't have our prescription pain medications, marijuana is still illegal in many states, a lot of us can't bear physical therapy, and over the counter pain medications just don't cut it. What are we left to do? It seems that suffering animals receive more compassion and concern than human beings.

A few years ago, I would barely take an aspirin for pain, let alone a prescription pain medication. I was more physically active, took vitamins and supplements, and was overall a happier, productive and somewhat healthier person. I didn't look down on or judge those that needed prescriptions to live.

Fast forward to today and I still take supplements and vitamins, yet I'm unable to be as physically active as I was and take several prescription medications. I've lost so much -- my career, quality time with family, my independence,  and being able to do a lot of the things I'd come to know and love. I feel as though I'm not even the same person I used to be. I'm a shell of my former self.  

In the midst of all of this suffering, I've gained something as well.  A few months ago, I was introduced to #PatientsNotAddicts on Facebook and on Twitter. #PatientsNotAddicts is an advocacy group whose mission is to show the world chronic pain patients are not addicts. I am the state representative in Ohio for #PatientsNotAddicts.

I've learned so much from the group and its members. I take what I learn and have experienced and share it with other chronic pain patients. There are a couple of people who I've formed friendships with. It's great to have friends you can talk with and who understand what you're going through. 

In closing, I just want to say it is not a character flaw to need prescription pain medications. However, it is a character flaw to be okay with treating all chronic pain patients as though we're addicts.  Not only should it be illegal, but it's just plain wrong. It shouldn't be this way! How are those responsible for allowing this to happen able to sleep at night?!

Jillian Drexler is from Cincinnati, Ohio.

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

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

Hip Fractures Often Ignored as Sign of Osteoporosis

By Pat Anson, Editor

Most older adults who suffer hip fractures aren't told they may have osteoporosis, despite the fact that hip fractures nearly always signify the presence of the bone weakening disease and can result in serious complications, according to a small survey of patients.

More than 10 million Americans suffer from osteoporosis and 44 million have its precursor, a loss in bone density that raises the risk of fractures and disability.  Studies have found that breaking a bone in your spine or hip may be so traumatic that it doubles your chances of developing chronic widespread body pain.

"You can die after a hip fracture, and you're at great risk of prolonged complications," said Gisele Wolf-Klein, MD, director of geriatric education for Northwell Health, the largest healthcare provider in New York state.

"You can also be left as an invalid, a fear of many older adults. When we think about how preventable hip fractures are, the fact that most patients aren't told or understand they have osteoporosis - a disease that can be treated - is an enormous problem."

Wolf-Klein and her colleagues surveyed 42 hip fracture patients aged 65 and older, and found a startling level of misinformation and mismanagement surrounding osteoporosis. 

A majority (57%) of patients said their hospital physicians did not recommend osteoporosis medication after treating their hip fracture. One in four patients said they would reject taking the drugs.

Nearly two-thirds (64%) of those who said they were being treated for osteoporosis were taking calcium and vitamin D supplements, which the Northwell researchers say are "useless" at preventing osteoporotic fractures.

More effective osteoporosis medication - which maintains bone density and lower the risk of a fracture - is available in many forms, including twice-yearly infusions or weekly pills. But the researchers say they're not prescribed as often as they should be.

"There's an enormous amount of misunderstanding about osteoporosis among the public and lack of education from physicians taking care of patients,"  said Stuart Weinerman, MD, an endocrinologist at Northwell Health, "Doctors don't talk about it and the perception is that these osteoporosis drugs are dangerous or not effective. Unfortunately, these misperceptions are just incorrect. So a lot of public education needs to be done, but it should start with physicians."

Lack of effective treatment can lead to additional fractures. Over a third of the patients surveyed sustained a fall within a year, and nearly half (44%) suffered an additional fracture.

"These numbers show the need to improve our overall treatment plan for osteoporosis, which includes fall-prevention education for patients and their families," said Mia Barnett, MD, a Geriatric fellow. "We can definitely get that re-fracture number lower if patients are treated with osteoporosis medications."

A quarter-million Americans sustain a hip fracture each year, according to the National Osteoporosis Foundation, but less than a quarter are treated for osteoporosis afterwards.

A recent study found that elderly men are far less likely to be screened for osteoporosis or to take preventive measures against the bone-thinning disease than women. The risk of death after sustaining a hip fracture is twice as high in men compared to women.

A large study of over half a million adults, published in the Archives of Osteoporosis, found that men and women who had a spine fracture and women who had a hip fracture were more than twice as likely to experience long term widespread pain.

How to Cultivate Hope and Not Dwell on Suffering

Pat Akerberg, Columnist

For the millions of people arm-wrestled into submission while they endure lives compromised by chronic pain, the kinds of suffering that go with it require no explanation.

Suffering comes in all forms of physical challenges (unrelenting pain, incurable illness, complications and limitations), psychological struggles (depression, anxiety, self-esteem, image and identity) and spiritual dilemmas (faith, meaning, purpose and acceptance).

Hope, an invisible yet essential holistic supplement, strengthens our resolve to face these challenging twists and turns by making the unbearable, bearable, and somewhat negotiable. 

Hope gives rise to a sense of meaning, purpose and possibility in our lives. Without it, our outlook becomes bleak and our emotional landscape flat. 

So how does hope link up with pain and suffering? 

I believe there are identifiable stages that occur between the degrees of suffering and hope we experience, creating a rise and fall relationship between them. 

When suffering is low, it makes sense that our hopefulness would be at a high level.  Like it was when I was lucky enough to be a part of what I call the “worried well” population.

Call that the “fortunate” stage when a person has not yet been tested by any of the tougher blows life can deliver. Unconstrained at this stage, hope can be defined as the belief that something better is always possible.

Inversely, the middle or “setback” stage knocks hope off its very axis, as our health is threatened.  Here we define hope as getting better, and fervently invest all of our energies in chasing that outcome.

However, if the condition becomes chronic, a person can feel quite powerless, with little control over being able to decrease their kinds or levels of suffering.  Their ability to feel hope about improving their situation plummets.

We usually think in terms of beginning, middle and end with stages.  However, what if there’s no end in sight, no “moving past” or “moving through” our medical plight?  Chronic illness shoves us into the “enduring” stage.

While it may seem that hope eludes us in this stage, at a time when it is needed the most, that doesn’t mean it no longer exists or is unavailable. But the journey to uncover that hope is tricky. Some tell inspirational stories about being transformed by rediscovering hope in a new way. 

Others seem to find a more self-empowering approach that influences how they will allow the latter stage to impact them. It’s not the happy, faux version of hope, but the livable version rooted in the hard work of finding a personalized realism.   

Feeling stuck in the “setback” stage for years, it hit me that not only was I irreparably damaged by the surgery promised to “cure” me, I was also medically conditioned by multiple doctors that my situation was hopeless – harmed beyond help or relief.

I have come to define this equally destructive medical implication as “learned hopelessness.”  No, not the popularized “learned helplessness.” People who learn to take action on the things within their control and bypass those they can’t aren’t helpless. 

But a medical system that has little intellectual curiosity, compassion, or time to devote to tough cases can create further assault by unwittingly kicking the hard can of truth right over the line into hopelessness. That was true for me, until I realized that both suffering and hope needed to be untangled and redefined to fit my new reality if I was ever to endure the “enduring” stage. 

With a damaged trigeminal nerve, I was still defining hope in improbable degrees of “getting better.”  Even just the notion of holding a compromised, shaky steady state felt like defeat vs. a small victory. 

Overcoming Emotional Traps

Once I caught on to these medical, mental, and psychological traps, I had to modify hope into feasible terms by translating it into the smallest incremental possibilities, and then some progressively larger ones. 

I’m talking simple things like being able to take a short walk, Skype with my granddaughter, have a short visit with a friend, follow a yoga CD, go to a retail store, and such. Sometimes my best hope equates to making it through the next hour. 

As I was able to redirect my focus on those smaller things in the enduring stage, I found that my repertoire for cultivating a smidgeon of hope expanded. I was onto something within my control that could influence my levels of suffering and hope.  Even better, that something wasn’t dependent on what doctors did or didn’t say or do.   

These small, successive flickers rekindled my battered relationship with hope. I felt as if hope could be resuscitated in spite of so many crashes. 

My pain hasn’t decreased physically as much as it has shifted into my side view mirror at times, as opposed to blocking my windshield (which grieving over losses can do).

What works better for me is to remind myself that no matter how difficult a time I might be having, I’ve survived worse ones.

We also create twisted parallels when we perceive and talk about suffering and hope by comparing how we were (before chronic pain or illness) to now (with them).  Such comparisons are faulty because they’re not apples to apples in time or circumstance.

Seven years in the “setback” stage taught me that if I focused on my level of suffering as it increased– which I call “suffering over my suffering” – it became a costly, self defeating exercise.

It’s tricky the way hope nudges us into a decision point to help us endure.

Instead of dwelling on the suffering of what we can no longer be, have, or do; it teaches us to lean into ways that side step the medical, mental, or emotionally dooming loops that sabotage the very thing we’d like more of – small reasons to still have hope.

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

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

Legalizing Marijuana? Don’t Forget its Medical Use

By Ellen Lenox Smith, Columnist

At least half a dozen states may be joining Colorado and Washington in the full legalization of marijuana. As a medical marijuana patient in Rhode Island, that has never been my battle. I have tried to stay focused on improving medical marijuana laws in Rhode Island and 23 other states, such as expanding the conditions for which it can be prescribed to include chronic pain and other medical issues.

It is mind boggling to me that some states have not yet approved marijuana’s medical use, but seem to be jumping right into legalization, most likely because they see it as a way to generate tax revenue.

We must hold onto the medical programs and be sure they are not mixed into the rules for full legalization. That would be like allowing medication from the pharmacy available to anyone to enjoy for pleasure. This is our medicine.

I have no problem with others having the pleasure of using cannabis socially, but let’s make sure we maintain the integrity of the medical programs.

This is our vision for every state in this country in the near future:

1) Medical marijuana is approved in all states and it includes reciprocity from state to state so we are safe to medicate legally when we travel.

2) Patients qualify when their doctors confirm they have a need and cannabis is no longer limited to specific conditions. There are many less common ones that can be treated effectively with this medication. 

3) Patients have a choice of growing, which is both therapeutic and helpful for those who find strains they are compatible with.

4) Each state offers compassion centers or dispensaries that are strategically placed so all have access within a reasonable distance.

5) Prices at these centers are affordable and on a sliding scale. Many who are afflicted with health issues already have massive medical bills. We do not want to have the mindset of making a large profit off the sale of their medication.

6) When all states are legal, we then conquer the battle of being reimbursed for our medicine from our insurance companies.

7) Allow centers to grow the plants they need to accommodate patients with all of the various strains. 

      8) Allow centers to sell various forms of medical marijuana, including dry product, oils, tinctures, topicals, edibles, etc.

      9) Allow a delivery system for those seriously ill and a gifting program to those financially unable to pay.

     10) All centers grow organically, keeping us safe from pesticides and other chemicals.

     11) People using medical marijuana will have the legal right not be drug tested, discriminated or fired from employment.

As the demand for full legalization continues to spread across the country, please help your state maintain the integrity of its medical program. Medical marijuana is intended to help us with quality of life, not to make a huge profit from. Let those that are using it for recreation be the ones to pay taxes and bring in the revenue for your state.

Let’s keep this medicine affordable for those in need.  For those that do not need it for medical reasons, be glad you are able to use cannabis socially and not have to face issues like us!

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis.  Ellen and her husband Stuart are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana or to contact the Smith's, visit their website.

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

Lyrica Linked to Birth Defects

By Pat Anson, Editor

A drug widely prescribed to treat fibromyalgia, neuropathy and other chronic pain conditions increases the risk of major birth defects, according to a new study published in Neurology, the medical journal of the American Academy of Neurology.

Women taking pregabalin were six times more likely to have a pregnancy with a major defect than women who were not taking the drug, the study found. The birth defects included heart defects and structural problems with the central nervous system (CNS) or other organs. Birth defects due to chromosomal abnormalities were not included in the results.

Pregabalin is the generic name of Lyrica, which is approved by the FDA to treat diabetic nerve pain, fibromyalgia, epilepsy, post-herpetic neuralgia caused by shingles and spinal cord injury. It is also prescribed “off label” to treat a variety of other conditions. Lyrica is Pfizer’s top selling drug, generates over $5 billion in annual sales, and is currently approved for use in over 130 countries.

The international study involved nearly 700 pregnant women in seven different countries. Four of the 125 women who took pregabalin during pregnancy had children with central nervous system defects, or 3.2 percent. That compares to a birth defect rate of just 0.5% in the 570 women who did not take pregabalin.

Of the women taking pregabalin, 115 were taking it to treat neuropathic pain, 39 were taking it for psychiatric disorders, including depression and anxiety, five were taking it for epilepsy, and one for restless leg syndrome.

Most of the women started taking pregabalin before they became pregnant. All of them stopped taking the drug at an average of six weeks into their pregnancies.

A small number of women also took another anti-seizure drug during their pregnancy. Women in that group had a 6 percent chance of a major birth defect, compared to 2 percent of the women who did not take another anti-seizure medication.

“We can’t draw any definitive conclusions from this study, since many of the women were taking other drugs that could have played a role in the birth defects and because the study was small and the results need to be confirmed with larger studies, but these results do signal that there may be an increased risk for major birth defects after taking pregabalin during the first trimester of pregnancy,” said study author Ursula Winterfeld, PhD, of the Swiss Teratogen Information Service and Lausanne University Hospital in Lausanne, Switzerland.

“Pregabalin should be prescribed for women of child-bearing age only after making sure that the benefits of the drug outweigh the risks and after counseling them about using effective birth control. In cases where women have taken pregabalin during pregnancy, extra fetal monitoring may be warranted.”

A spokesman for Pfizer said the study was small and the findings could have been influenced by other factors.

"As the authors agree, the study has significant limitations and cannot be used to draw definitive conclusions," Steven Danehy said in an email to Pain News Network. "The study was small, did not account for other medical conditions or medications, and the women taking Lyrica had higher rates of smoking and diabetes, all of which can negatively affect pregnancy outcomes."  

Because women are more likely than men to have a chronic pain condition such as fibromyalgia, they are the biggest consumers of Lyrica.

The FDA warning label for Lyrica does not specifically warn pregnant women not to take the drug. But it does caution them to consult with a doctor if they are pregnant or plan to become pregnant.

“It is not known if Lyrica will harm your unborn baby. You and your healthcare provider will have to decide if you should take Lyrica while you are pregnant. If you become pregnant while taking Lyrica, talk to your healthcare provider about registering with the North American Antiepileptic Drug Pregnancy Registry,” the label says.

The label also cautions men to see a doctor if they plan to father a child while taking Lyrica. 

“Animal studies have shown that pregabalin, the active ingredient in Lyrica, made male animals less fertile and caused sperm to change. Also, in animal studies, birth defects were seen in the offspring (babies) of male animals treated with pregabalin. It is not known if these problems can happen in people who take Lyrica,” the warning label states.

Green Light Reduces Migraine Headache

By Pat Anson, Editor

Many people who suffer from migraines will tell you that bright light can trigger a horrible headache.

But researchers at Beth Israel Deaconess Medical Center in Boston have found that a narrow band of green light can significantly reduce light sensitivity – known as photophobia – and reduce headache severity in migraine sufferers.

"Although photophobia is not usually as incapacitating as headache pain itself, the inability to endure light can be disabling," said Rami Burstein, PhD, Vice Chair of Research in the Department of Anesthesia, Critical Care and Pain Medicine and Academic Director of the Comprehensive Headache Center at Beth Israel Deaconess, as well as the John Hedley-Whyte Professor of Anaesthesia at Harvard Medical School.

"More than 80 percent of migraine attacks are associated with and exacerbated by light sensitivity, leading many migraine sufferers to seek the comfort of darkness and isolate themselves from work, family and everyday activities."

Five years ago, Burstein and his colleagues made the surprising discovery that blue light hurts migraine patients who are blind. The finding prompted research that found photophobia could be alleviated by blocking blue light. However, because that study involved only blind patients, who cannot detect all colors of light, researchers devised a way to study the effects of different colors of light on headache in patients who are not visually impaired.

In the first study of its kind, published in the journal Brain, Burstein and colleagues found that a narrow band of green light worsens migraine significantly less than other colors of light, and that low intensities of green light can even reduce headache pain.

The researchers asked 43 patients experiencing acute migraine attacks to report any change in headache when exposed to different intensities of blue, green, amber and red light.

As the intensity of the light increased every 30 seconds, patients were asked if their headache intensified. Nearly 80 percent of patients said their migraines got worse when exposed to white, blue or amber light, while green light was found to reduce pain in 20 percent of patients.

Researchers then measured the magnitude of the electrical signals generated by the retina (in the eye) and the cortex (in the brain) of patients in response to each color of light. They found that blue and red lights generated the largest signals in both the retina and the cortex, and that green light generated the smallest signals.

Researchers also used laboratory rats to study neurons in the thalamus, an area of the brain that transmits information about light from the eye to the cortex. These neurons were found to be most responsive to blue light and least responsive to green light, explaining why the migraine brain responds favorably to green light.

"These findings offer real hope to patients with migraines and a promising path forward for researchers and clinicians," said Burstein.

Burstein is now working to develop a more affordable light bulb that emits "pure" (narrow band wavelength) green light at low intensity, as well as affordable sunglasses that block all but this narrow band of pure green light. Currently, the cost of one such light bulb is prohibitively high ($360 to $500, according to this research) and the technology to block all but pure green light in sunglasses is also very costly.

Light therapy – also known as infrared or laser therapy – is also being used to treat pain from aching joints, muscles and low back pain. Red and green light are also used as a treatment for skin disorders such as acne, aging spots and wrinkles. The theory is that light therapy increases circulation and stimulates the growth of collagen in skin.

About a billion people worldwide suffer from headaches caused by migraines, which affect three times as many women as men.

Migraine affects about 36 million adults in the United States, according to the American Migraine Foundation. In addition to headache pain and nausea, migraine can cause vomiting, blurriness or visual disturbances, and sensitivity to light and sound. About half of people living with migraine are undiagnosed.

What Arachnoiditis Did to Me

By Shane Schwartz, Guest Columnist

I injured my back lifting tiles and went through every possible treatment, including physical therapy, steroid injections and a host of other things before finally deciding to have surgery. I couldn't take the pain any longer.

After speaking with the neurosurgeon, I elected to proceed and had a 360 degree 2 level fusion at L4-S1 with plating and decompression. It was quite an extensive surgery lasting over 9 hours. I did okay for the first 6 months and was placed in physical therapy as part of my rehabilitation -- supposedly to get back to 80% of my normal health.

Well it fell apart shortly after that and I underwent another round of epidural injections in hopes of some sort of relief, but to no avail.

After being kicked to the curb by my neurosurgeon and being told of all kinds of different diagnoses which made absolutely no sense, I went to the Oklahoma University Medical Center because I was told I had a brain tumor by the crooked neurosurgeon’s partners in crime.

Upon arriving at the hospital, I said I needed a brain scan because of what the doctors who did my spine surgery had told me. The doctors at OU pretty much laughed after a physical exam of me. They scheduled me for spinal imaging and that is the first time I ever heard of Arachnoiditis. My father is a nurse anesthetist and he was very concerned when he heard that word being used.

Suddenly everything started fitting into place as to what was happening to my body. Look at the before and after pictures of me. My heart goes out to everyone dealing with this.

I sent my MRIs scans to a very qualified physician who specializes in this disorder and went to visit with him after reviewing my scans. He confirmed it was Adhesive Arachnoiditis.

Folks, this disorder is so much more than a spine issue. It robs me of everyday life as I once knew it.

I'm 41 years old, but feel as if I'm 90. No disrespect to the elders, please don't misunderstand me, but it causes unrelenting pain throughout my entire body.

BEFORE AND AFTER PHOTOS OF SHANE SCHWARTZ

I just want to be able to enjoy life with my children again. I have a 17 and 8 year old who have basically had their father stolen from them.

This disorder needs to be on the front burner of every doctor doing any kind of spine surgery, as I was NEVER warned of anything even remotely close to this as a side effect.  I question almost daily if tomorrow is even worth it. This is no way to live.

The spine surgeons keep getting richer at the public expense and when something of this nature occurs, you are like a tin can and kicked to the next doctor, who may or may not take you. From my experience no doctor wants to deal with Arachnoiditis once they hear the word. WHY?!?!? I am a human being!!!! Not a tin can that can just be kicked around and down the road because these doctors don’t want to deal with it or own it!!!

It's so very frustrating, depressing, and my anxiety is through the roof. It's just HORRIBLE!!!

God bless anyone and everyone who has this disorder and has to deal with it on a daily basis. I am open to conversing with others in my shoes. I love and wish us all the best and thanks for reading.

Shane Schwartz lives in Oklahoma.

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

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

Study: Some Brains ‘Hardwired’ for Chronic Pain

By Pat Anson, Editor

Why do some people develop chronic pain from an injury or illness, while others do not?

The answer to that question may really be all in our heads.

A groundbreaking study by scientists at Northwestern University and the Rehabilitation Institute of Chicago (RIC) found that some people are genetically predisposed to chronic pain because of brain “abnormalities” that raise their risk of developing chronic pain. The findings challenge long-standing views on the science of pain, which emphasize treating pain at the site of the initial injury.

"While simple, the logic of addressing problems at the site of an injury to remove pain has resulted in only limited success," said senior study author Marwan Baliki, PhD, a research scientist at RIC and an assistant professor of physical medicine and rehabilitation at Northwestern University Feinberg School of Medicine.

"The central processes of chronic pain have largely been ignored, so our research team set out to better understand the brain's role."

Baliki and his colleagues conducted the first longitudinal brain imaging study, which tracked 159 patients for three years following an acute back injury, along with 29 healthy control subjects.  

MRI brain scans were conducted on all of the participants five times during the course of the study.

The researchers found that patients who developed chronic pain from their back injury had a smaller hippocampus and amygdala compared to those who recovered from the injury and the healthy control subjects.

The hippocampus is the primary brain region involved in memory formation and retention, while the amygdala is involved in the processing of emotions and fear. In addition to size variations, these brain regions also showed differences in connections to the rest of the brain, particularly to the frontal cortex, an area involved in judgment.

Together, the researchers estimate that these brain differences accounted for about 60% of the chronic pain felt by participants.

Most importantly, the study also revealed that the volumes of the amygdala and hippocampus did not change over the course of the study, suggesting that those who developed chronic pain were genetically predisposed to it.  

"Here we establish that the gross anatomical properties of the corticolimbic brain, not the initial back pain, determine most of the risk for developing chronic pain," said first author Etienne Vachon-Presseau, PhD, a visiting postdoctoral fellow in physiology at Feinberg.

“As the anatomical risk factors were stable across 3 years, they were presumably hardwired and present prior to the event initiating back pain. These results pave the way for the development of novel and distinct approaches to prevention and treatment of chronic pain.”

The Northwestern and RIC study will be published in the June edition of the journal Brain.

The Hidden Dangers of Self-Medicating with OTC Drugs

By James Campbell, MD, Guest Columnist

The Centers for Disease Control and Prevention (CDC) recently unveiled guidelines for primary care physicians on the use of opioids for chronic pain. Not surprisingly, the guidelines urge physicians to first try non-pharmacologic and non-opioid treatments before resorting to opioid therapy.

If you’re one of the millions of Americans living with pain on a daily basis, it’s likely you’re not a stranger to over-the-counter (OTC), non-prescription pain medications such as naproxen (brand name Aleve), ibuprofen (Advil and Motrin), aspirin and acetaminophen (Tylenol).

In fact, most of my patients with chronic pain began their quest for relief with a cocktail of OTC pain relievers, muscle relaxants and even alcohol, before seeking professional help and eventually graduating to prescription treatments such as opioids, anti-depressants and anticonvulsants.

While OTC pain medications are generally safe when taken at their recommended doses, it’s all too common for patients to unknowingly put themselves at risk of a fatal accidental overdose or serious drug-drug interactions by mixing OTC pain medications or taking them in combination with prescription treatments for pain or other common health conditions.

Given the sheer magnitude of serious adverse events and fatalities associated with opioids, the hidden, yet preventable dangers of the pain medications on your pharmacy shelves are not often discussed.

Let’s take one of the most common OTC pain relievers: acetaminophen. When used as directed within the advised dosing guidelines, acetaminophen is safe and effective. However, if a person takes more than one medication that contains acetaminophen and exceeds the maximum recommended dose, they may be at risk of serious liver damage.

This happens so often that acetaminophen overdose is the leading cause of calls to poison control centers in the United States -- more than 100,000 instances per year – and are responsible for more than 56,000 emergency room visits.

In fact, in 2011, in an effort to reduce the risk of severe liver injury from acetaminophen overdose, the Food and Drug Administration (FDA) asked drug manufacturers to limit the strength of acetaminophen in prescription medications, including combination acetaminophen and opioid products, to no more than 325 mg per tablet, capsule or other dosage unit.

Then in 2014, the FDA recommended that health care professionals discontinue prescribing and dispensing prescription combination products that contain more than 325 mg of acetaminophen.

While the FDA’s efforts may help curb accidental overdose related to prescription medications that contain acetaminophen (Tylenol with codeine, for example), it does little to address the risks of OTC acetaminophen or other OTC pain medications such as ibuprofen, a type of non-steroidal anti-inflammatory drug (NSAID), which can cause gastrointestinal bleeding and injury, and cardiovascular side effects when taken on a chronic basis.

Drug Interactions

In addition to the risk of overdose, people taking multiple OTC and prescription medications for pain and other conditions are also at risk of serious drug-drug interactions. Simply put, any “drug” – whether it be a medicine, vitamin, supplement or even alcohol – that enters your body and alters your natural internal chemistry has the potential to interact or alter the intended effect or unintended side effect of other medications.

Even though most medications are accompanied by warnings about combining them with other drugs, most vitamins and supplements are not -- so, unless you’re a licensed medical professional, it’s virtually impossible to recognize the potential for drug-drug interactions.

If you’re using OTC medications, whether alone or with prescription medications, to cope with pain on a daily basis, here are three precautionary steps you can take to safeguard yourself against the risk of accidental overdose or drug-drug interactions.

1) Recognize that ALL medications, whether OTC or prescription, can cause harm if used improperly, and the fact that some medications are available without a prescription does not mean they are inherently safe. Read the labels that come with your medications. Tylenol, Advil and Vicodin are household names, so it can be easy to overlook their “generic” names (or the active ingredient in each).

For example, the generic name for Tylenol is acetaminophen, while that of Vicodin is acetaminophen hydrocodone. Without close examination of either label, a person taking Vicodin and Tylenol together could be inadvertently exceeding the recommended dosage of acetaminophen.

2) Consult a medical professional before you take more than one medication on a daily basis. If your chronic pain is being treated by a physician, be sure to tell them (even if it’s on your medical history) about any OTC or prescription medications you are currently taking. This includes vitamins and other supplements that may seem harmless, but could interact with your pain medications.

3) If you are independently treating your chronic pain, make a list of all the medications, vitamins and supplements you take on a regular basis and share them with your local pharmacist. Pharmacists can identify potential drug-drug interactions like taking acetaminophen and ibuprofen on a long-term basis, which can result in an increased risk of developing kidney problems.

The American Chronic Pain Association also recommends using the same pharmacy for all your prescriptions, so that the pharmacist can screen health information and current medications to avoid the pitfalls of overdose and drug interactions.

As a neurosurgeon with a special interest in pain for over 30 years, I’m empathetic to the daily struggle that patients face and their desperate quest for relief, seeking anything and everything that can simply make the pain stop.

For the patients who are fighting this seemingly endless battle with pain without the help of a medical professional, I hope I’ve provided some useful information and practical advice to help avoid serious risks associated with self-medicating. However, people living with moderate to severe chronic pain may benefit from a consultation with a licensed pain management specialist, who can help guide you toward steps that will help reduce your pain. 

James Campbell, MD, has spent the last 30 years pioneering efforts to improve the diagnosis and treatment of patients with chronic pain. 

Dr. Campbell is professor emeritus of Neurosurgery at Johns Hopkins University School of Medicine and is the founder of the Johns Hopkins Blaustein Pain Treatment Center - one of the largest pain research centers in the U.S. He is also a former president of the American Pain Society. 

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

Why Aren’t Pain Patients Protesting?

By Mary Maston, Guest Columnist

I’ve become somewhat disenchanted with my role as a pain patient advocate. When I started out in 2011, I was armed with a strong opinion, an admittedly big mouth, and I suppose I had grand illusions of working with others to effect positive change.

I wanted to help right the wrongs being inflicted on people who depend on pain medication -- not because they want to -- but because of some catastrophic life event that forced them to choose between taking medication to be able to function in their lives or not being able to function at all.

I’ve been there myself. I’m still there and always will be because my kidney diseases are never going away.

Throughout this journey, I’ve had the opportunity to converse with and learn from some highly educated and well versed people in the pain community. Watching them do what they do to help others is nothing short of awe inspiring, and it has helped to keep me going. For that, I can never thank them enough.

The one thing that’s been drilled into my head all these years and has been mentioned in just about every article I’ve ever read about chronic pain is the number 100,000,000.

ONE HUNDRED MILLION. That’s supposedly how many chronic pain patients there are in the United States. If you believe that statistic, we make up nearly a third of the population of the entire country.

So my question is this: WHERE THE HELL ARE YOU??

I read most of the articles that are published on pain and/or pain meds, and all of the comments on both the articles and on Facebook, if that’s where the article is posted. For the most part, I see the same names commenting over and over. Kudos to those who stay persistent, but where are the rest of you?

ONE HUNDRED MILLION and the author is really lucky if he/she gets a couple hundred comments. Usually 30-40 is the going rate. Sometimes it’s even less than that. You can’t blame those who don’t have an internet connection either. Just about everyone has a phone or tablet these days and even elderly people are online in record numbers.

Maybe it wouldn’t have made much of a difference, but maybe it would have if the CDC opioid guidelines had gotten more of a response than they did. We’ll never know now. Where were you when the CDC was taking public comments? I can’t remember the final number, but I know for sure that they received less than 5,000 comments, and many of those comments were people who were in favor of the guidelines – people working against you and the advocates that are trying to go to bat for you.

I personally shared the CDC comment link repeatedly in my Facebook group and practically begged people to write a comment and share their experiences. From talking with other administrators of other groups in the past, I’m sure they all did too. Only a small handful from my group wrote a comment, and by small handful, I mean less than 20.

To say I was disappointed with the final number of comments from patients is an understatement, but what’s done is done and now we all have to live with the outcome.

ONE HUNDRED MILLION - WHERE ARE YOU?

There’s another petition to the White House that’s been active since May 3, asking all of the government entities, including the President, to take pain patients and what we are going through into account by revising the CDC guidelines. It’s been online for 14 days now and only has about 600 signatures. It needs 100,000 to reach the White House.

ONE HUNDRED MILLION - WHERE ARE YOU?

The bottom line is this: We as advocates are doing the best we can and are trying to help you, but we can’t do it by ourselves. Make no mistake, we are rapidly losing this battle and in the end, you are the ones that are going to lose big. Venting in closed Facebook groups is great if it makes you feel better, but complaining in a closed group about not getting your meds to people who can do nothing about it does absolutely NOTHING to contribute to solving the problem. Neither does posting comments on Facebook. You have to go beyond that.

When we use that number, 100 MILLION, and then something big comes along like the CDC guidelines or petitions to the White House and you all don’t step up, it makes us look like we’re just pulling that number out of our rear ends -- like we’re lying.

What are we fighting for if we can’t produce the numbers to back it up? Just my opinion, but if you feel you’ve been wronged because you can’t get the meds you need, I shouldn’t have to beg you to help me fight for you.

I may be mistaken, but I get the impression more and more that other advocates are starting to feel this way as well. How can you help people that aren’t willing to do anything to help themselves? The answer is simple. You can’t.

We know you’re out there and we know what you’re going through; you write to us and tell us. Why won’t you take it further? We only have so many tools we can use, and it’s only going to get worse if you aren’t willing to lend your voices and your signatures to the things we are trying to use to fight for you.

ONE HUNDRED MILLION – that’s a huge number. Imagine what we could do if we all stood united and took a stance. That number of voices is hard to ignore. SO WHERE ARE YOU?  

Mary Maston suffers from a rare congenital kidney disease called Medullary Sponge Kidney (MSK), along with Renal Tubular Acidosis (RTA) and chronic cystitis. Mary is an advocate for MSK and other chronic pain patients, and helps administer a Facebook support group for MSK patients.

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.

Doctors Not Advising Parents to Dispose of Pain Meds

By Pat Anson, Editor

Keeping prescription opioids away from children may seem like a no-brainer, but a surprising number of parents fail to do that. And their doctors are part of the problem

Nearly half of parents whose child had opioid pain medication leftover from a surgery or illness say they kept the painkillers at home, according to a report by the C.S. Mott Children's Hospital National Poll on Children's Health. In many cases, an excess amount of opioids was prescribed and doctors did not advise parents to dispose of the leftover medication.

"We found that the amount of pain medication prescribed for children is frequently greater than the amount used, and too few parents recall clear direction from their provider about what to do with leftover medication," says Matthew Davis, MD, director of the poll and professor of pediatrics and internal medicine at the University of Michigan's C.S. Mott Children's Hospital.

"This is a missed opportunity to prevent prescription drug misuse among children. Many parents simply keep extra pain pills in their home. Those leftover pills represent easy access to narcotics for teens and their friends."

The survey results are based on a poll of nearly 1,200 parents with at least one child aged 5 to 17.

Nearly a third of the parents (29%) said their child had been prescribed at least one pain medication in the last five years. Most prescriptions (60%) were for opioids such as oxycodone and hydrocodone, while only 8% were for non-opioid pain relievers. Nearly a third of the parents could not recall the type of medication their child was given and half said they had pain medication leftover.

Most parents said their child’s healthcare providers discussed how often to take the medication (84%), when to cut down (64%) and possible side effects (61%). But only a third (33%) reported that the doctor discussed what to do with leftover medication.

“The majority of parents did not recall getting direction from their child’s provider on what to do with leftover pain medication; without guidance, many parents simply kept the extra pain pills in the home,” the report said.

“This raises a fundamental question about how providers approach the task of prescribing pain medication to children: are they prescribing ‘just enough’ medication for a standard recovery, or additional doses ‘just in case’ there is prolonged pain? Providers should make careful decisions regarding the amount of narcotic pain medication prescribed to children, and parents should feel comfortable asking questions about the amount of medication prescribed.”

What did the parents do with leftover pain medication? Nearly half (47%) kept the drugs at home, while 30% disposed of it in the trash or toilet.

Only 8% returned it to the doctor or pharmacy, 6% used it for other family members and 9% didn't remember what they did with them.

Twice as many parents (56%) with no guidance from their provider kept leftover pain pills at home, compared to parents whose providers discussed what to do with them (26%).

“Parents need clearer guidance on all aspects of administering prescription medications for their children. This is particularly true for pain medication,” the report found.

Don’t Complain About the Grilled Cheese

By Barby Ingle, Columnist

2016 is turning into the year of the patient advocate. It’s been great to see pain sufferers who’ve been quietly supporting our advocacy work for years finally start speaking up for themselves. I think the CDC opioid guidelines and having so many doctors change their practices have caused this surge.

We need to be heard, but I am also seeing people still trying to convince the CDC that we are suffering and that we are not drug seekers. It reminds me of the quote by Dale Carnegie: “Those convinced against their will are of the same opinion still.”

Being in advocacy meetings and testifying at the federal and state level on a multitude of pain challenges and policies, I have learned that there is a better way to approach this. I have gone to legislative meetings where minds were made up before we even testified. They gave us our 2 to 5 minutes to speak and then went ahead with the decision they were set to go with before the meeting started.

Having done over 300 media interviews, I can also say even in a live interview this is what you can expect. The reporters and producers have a set script and set agenda before you arrive. They have the questions and graphics set in advance. If you think you will be able to tell your side and convince someone to change their mind in a public setting, think again.  

Here is a parallel example. If you walk into a sandwich shop owned by a grilled cheese sandwich maker and the shop is called Sammy’s Best Grilled Cheese, don’t expect to find a beef brisket dinner on the menu.

Yelling at the owner (who advertised properly what you will get there) or complaining on social media will only bring Sammy’s free advertising. They are not going to change their menu. They know that will not make everyone happy, but it is their shop.

You want a beef brisket dinner? Find a different restaurant or make your own. And if you make your own, don’t expect the grilled cheese fans to come.

In the case of TV, after doing a few shows myself, I know the producers are not looking to see if people liked the show or not, they are looking to see if people react. Yelling or writing mean letters, emails, and social media posts is only giving them ratings and marketing for free. It promotes their agenda and message even more. It’s exactly what they want.

They already know that there are more chronic pain patients than addicts, that patients have limited access to proper and timely care, and that the sponsors of the program are paying them. And they will cut you off the more you fight. 

How can we be heard? When it comes to legislation, we need to work to get into committee meetings before the big public hearings. Legislators need guidance before the hearings happen. Share social media posts, call the legislators’ offices and send letters before the hearing. Show up at press conferences for the bills that we support.

It is very difficult to change a legislator’s mind at a public hearing. We have to get them before the hearings. Once we get on the inside, then we can get placed on advisory committees and work strategically towards making changes. This is something that will take time to do, but it is the most effective way to make meaningful, lasting change.

When it comes to media, we need to place our own stories and not react to every story or segment that has already aired. They can’t go back, it is done and it is out there. Commenting on them is okay, but it is not going to get our voices heard for meaningful change. Who are you trying to convince at that point? If the show or story doesn’t promote what you want, why keep pushing it through social media?

The person or media group that put it out is happy to see the reaction to their piece. Most readers do not even go through and read what you write, and others will see 207 comments and skip through them. Why not give them no comments and no attention if it goes against what you believe? Instead write your own blog, media article, or TV station about airing a segment on chronic pain and the area of interest you want covered, the way you want it covered.  

If you want a beef brisket, go to where you can get one, don’t spend time going to Sammy’s, where you know it is not sold. Going after the chef and demanding he offer a different choice is not going to happen. It has only given us Soup Nazis like the CDC: “No soup for you!”

We need to create our own recipes. Give them well-thought answers with research to back it up. We know that the studies the CDC used were poorly done, so maybe start with presenting better research. There isn’t any? Then we need to create our own research studies, surveys and needs assessments.

The same concept can be applied to finding the right healthcare provider. If you read their website and they don’t offer the treatment you would like to try, find one who does. You will have a better chance of being heard, bettering the pain community, and making a difference that can be lasting and effective. 

The solution is going to take time. It will mean electing people to public office who understand what we are going through, who are pain patients themselves or a caregiver who gets it. It is going to take patients voting and speaking out at the right place and time. Speaking up after a decision is made is not helping. It is making us look like seekers and addicts.

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

More information about Barby can be found at her website.

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