Pain Is Not a Competition

By Mia Maysack, PNN Columnist

A question I've often encountered is, “Why make pain political?”

Here's a newsflash for everyone:  It was created that way. And not initially by us, I might add.  

Despite having lived with chronic head pain every single day for over 20 years, I’m still fighting for a proper diagnosis. The more tests, appointments, examinations and permission slips I get only feeds into the perpetual cycle of phone tag, hold music and Zoom links. Not to mention pandemic induced anxiety.

It's all done in the name of “patient centeredness,” but I find it all confining and traumatizing.     

This has led to me visiting with healthcare providers very minimally. I’m grateful to be able to slowly but surely distance myself, but I’m also aware that many won’t ever have that option or luxury. I have always been conscious of my privilege, almost dying while minding my own business as a 10-year old has a tendency to humble a person. That’s part of what fuels my fire to fight not only my own battles, but for the sake of others in the form of activism.

Common misconceptions are that a person must be able-bodied in order to participate in their own advocacy or that we are permitted only to advocate for a specific cause, such as limiting ourselves to whatever pain condition or treatment we identify with.

But if we expect people to care about what we’re going through, wouldn’t inclusiveness for other causes be a demonstration of mutual respect and support?  That is lacking in the pain community and beyond.  

For example, I’m severely allergic to most medications, specifically the “good stuff” for pain relief. But that hasn’t stopped me from being involved in efforts pertaining to the opioid crisis and healthcare access in general.

I was once invited to speak at a patient protest where I would have otherwise remained silent. Other patients who were there understandably did not want to be judged, ridiculed, exiled or singled out for speaking up about opioid medication, so I stepped up and shared my own story. For that, I was shamed afterwards, due to the fact I am not physically tolerant of pills!

If that ain’t political, I don’t know what is.                

It has been my experience that there’s tremendous difficulty in acknowledging someone else’s perception as being equally real and valuable as one’s own. This leads to a self-defense mechanism, cultivating a sense of validation that can come across as belittling what others have gone through. No one really knows what it is like to live a day in someone else's shoes

I don’t participate in groups fixated on ONE type of ailment. Discomfort of all kinds should be invited and welcomed because hurt does not discriminate and misery can’t be measured. Pain is not a competition. 

I have felt the need to step away from people who are not supportive. Instead of working to strengthen the inner bond that unites us, many would rather convey how much worse they have it than everybody else, instead of listening and learning from others.  

We're in the thick of it as a collective right now. It is necessary for the sake of our lives to inch closer toward a willingness to grow and project hope, especially when it feels like there is none.  That's how we can save ourselves and one another.   

Focusing on what separates us as opposed to how we're able to relate as humans is overly prevalent throughout the pain community and beyond. Suffering is playing out on a global scale and is much bigger than any of us. We’ll never drive true change in healthcare if we dismantle each other instead of the systems we’re fighting against.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

Developing a Covid-19 Vaccine Requires Patience

By Dr. Lynn Webster, PNN Columnist

There is a worldwide race to find a vaccine for the coronavirus. This is a good thing. We all want a vaccine. Everyone is eager to get back to a "new normal" — whatever that will mean — but it's unlikely to happen until we have an effective and safe COVID-19 vaccine.

The pandemic has already cost us more than 700,000 deaths around the world. The sooner we are able to manufacture and distribute a trustworthy vaccine, the better. The company and country that develop an effective vaccine first will likely be credited with saving hundreds of thousands of lives. The company that wins the race may benefit financially. Prestige and power are also at stake.

Researchers who were already working on vaccines for other coronaviruses, such as SARS and MERS, when the pandemic hit have an advantage. Several companies claim to be on the brink of developing a vaccine. Moderna, Pfizer and AstraZeneca are among the pharmaceutical leaders that have fast-tracked the testing process and claim to be almost ready with a vaccine.

However, rushing a vaccine to market could be dangerous. It typically requires many years to develop a new vaccine because it can take weeks for antibodies to emerge -- and even longer for negative side effects to develop. It may take several months to a year for some adverse effects to emerge, so studies require long-term follow-up to track thousands of vaccinated patients.

Many things can go wrong. The Cutter incident in 1955 was a tragic example of this. America's first polio vaccine caused 400,000 cases of polio, paralyzing 200 children and killing 10. The mass effort to immunize children against polio had to be suspended, and laws were put in place to ensure federal regulation of future vaccines.

There have been other vaccine-related fiascos, too. They should teach us all to be cautious and exercise patience with the development of new inoculations — even one as urgently needed as a COVID-19 vaccine.

Russia’s Vaccine 

On August 11, President Vladimir Putin announced that Russia has developed a COVID-19 vaccine. He even claimed that one of his daughters had been vaccinated. However, reports state the vaccine has not been tested beyond some of Russia's elite and military personnel. Results have not been published, and the vaccine has yet to be certified as either effective or safe. 

Last year, more than 800 scientific publications by Russian scientists had to be withdrawn because they contained plagiarized and fraudulent data. This does not bode well for the veracity of Russia's current claims of a vaccine discovery. 

Developing an effective vaccine will take time. However, we should allow as much time as it requires to ensure the vaccine's safety. We cannot cut corners, or people will be harmed. We also need to trust the source of the reported progress. It makes sense to be cautious about accepting anything Russian scientists or its leadership purport to have accomplished. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

My Name Is Fibromyalgia

By Cathy Kean, Guest Columnist

I am an unwelcome, uninvited, germinating presence that has come to invade your peaceful existence. You will never be the same. I will fill you with misery and take over every aspect of your life. My name is fibromyalgia.

When I am feeling especially mischievous, I will cause you aches and extreme pain. I will rob you of your strength, energy and cognition. You will try to formulate a complete sentence, but only to be able to grasp a few basic words. This is called fibro fog.

I will make it difficult for you to concentrate on anything and your memory will suffer drastically! You will be told constantly by others, “Don’t you remember I told you?” They’ll be thinking you are intentionally trying to get out of something.

I see your frustration and I see your sorrow. Once you were an outgoing, social and engaging individual. Now you are pretty much a recluse. See? I am good at what I do.

You think you can get rid of me by going from doctor to doctor? Silly one, you have been to 8 doctors already and they all discount you by saying, “There is nothing wrong. It’s all in your head.”

Wreaking havoc is what I do best. I will rob you of sleep and much more. I’ll make your body temperature go crazy hot when it’s cold, and cold when it’s hot. You will never feel comfortable again.

I’ll give you digestive issues, anxiety and depression. You will experience lack of control, grief, worry, immune dysfunction, chest pain, panic attacks, inflammation, insomnia and memory loss. Your body will be overly sensitive to pretty much everything, thanks to me!

I will introduce a new sensation into your existence called “noxious stimuli.” It could be a bad smell, bright light, noise, anything. Because your body is now overly sensitive, it will react strongly to just about anything. The lights will be too bright when they’re just fine for everyone else. The same goes for visual chaos, heat, cold and pressure on your skin.

Your nerves will overreact to the things around you and your brain will get overloaded when it gets these signals that intensify your pain.

I will attack you when you least expect it. You will have no way of knowing when, because I am always present, always lurking around! This will hurt your family, your career, your outlook and your sense of self. I will follow you everywhere, never a reprieve!

When I am angry, your days will be hell and your nights sleepless. I’ll be behind you, beside you, everywhere, every day. To the point where you will not remember a time when you lived outside of my grasp.

Imagine feeling like you were burning from the inside out. The stress will be huge and will exacerbate all your other conditions! Your bones will feel like someone is using a jackhammer on them, especially during a change of weather.

Emotionally, I will make it so anything, even something little, will stress and worry you, which will make your body rebel and symptoms flare up just for the fun of it. Your nerves will create phantom itches that will make you scratch yourself raw. The simplest tasks will take you 10 times longer and five times as much energy to finish.

Because I am an invisible illness, others will not be able to see your pain, suffering and degree of sickness. You will hear comments such as:

• “But you don’t look sick.”

• “Must be nice to sit in bed all day.”

• “Your pain can’t be that bad.”

• “If you ate better, you’d feel better.”

You will be called lazy, a liar, faker, fabricator and more.

Because I make you hurt so much, you will need pain relief. The most effective and efficient medication for your symptoms will be prescription opiates. But they have been stigmatized and demonized by doctors, family, government and more. You will be called a drug seeker, an addict, and a druggie. So many hurtful, demeaning labels will be placed upon you which will hurt, damage and wound your soul.

Why? You didn’t ask for this!

It’s because of ignorance! The media has inundated the public by selling them a sensationalized, false and inaccurate narrative about opioids to sell papers and get ratings. Judgmental people who jump to conclusions without researching the true answers.

Shame on them for their cruelty. They make my job so easy, which is to inflict pain, suffering and mayhem.

So here I am, fibromyalgia, your new friend. I am always looking for others to invade and conquer. Unless you’ve walked in the shoes of others who are afflicted, you will never know the depth of their struggles.

Cathy Kean lives in California. She is a grandmother of 7 and mother of 4. Cathy has lived with intractable pain for 14 years from a botched surgery, along with fibromyalgia, arachnoiditis, stiff person syndrome, lupus, Parkinson's disease and insomnia. Cathy is the creator and administrator of the Facebook pages Chronic Illness Awareness and Advocacy Coalition and Pain is Pain.

Becoming Aware of Ingrained Thoughts Can Reduce Pain and Anxiety

By Dr. David Hanscom, PNN Columnist

Self-awareness is the essence of healing. You cannot stimulate your brain to develop in a given direction unless you become aware of who you are and where you are starting from. Awareness is a meditative tool that can be used to calm the nervous system, reduce chronic pain and anxiety, and move forward with your life.

There are four patterns of awareness that I’ve written about in previous columns that work for me:

Environmental awareness is placing your attention on a single sensation – taste, touch, sound, temperature, etc. What you are doing is switching sensory input from racing thoughts about pain to another sensation. This is the basis of mindfulness – fully experiencing what you are doing in the moment.

I use an abbreviated version that I call “active meditation,” which is placing my attention on a specific sensory input for 5 to 10 seconds. It is simple and can be done multiple times per day.  

Emotional awareness is more challenging. It often works for a while, but then it doesn’t. When you are suppressing feelings of anxiety, your body’s chemistry is still off and full of stress hormones. This translates into pain and other physical symptoms.

Allowing yourself to feel all of your emotions is the first step in healing because you can’t change what you can’t feel. Everyone that is alive has anxiety. It is how we survive.

Judgment awareness is a major contributor to the mental chaos in our lives. You create a “story” or a judgment about yourself, another person or situation that tends to critical and inflexible.

Dr. David Burns in his book “Feeling Good” outlines 10 cognitive distortions that are a core part of our upbringing. They include:

• Labeling yourself or others

• “Should” thinking – the essence of perfectionism

• Focusing on the negative

• Minimizing the positive

• Catastrophizing

These ingrained thoughts are the fourth and most problematic to be aware of. You cannot see or correct them without actively seeking them out.

Our Brains Are Programmed at an Early Age

Our family interactions in childhood are at the root of how we act as adults. They stem from our upbringing and the fact that our brains are “hard-wired” during our formative years. We know from recent neuroscience research that concepts and attitudes from childhood are embedded in our brains as concretely as our perception of a chair or table.  

I used to say that thoughts are real because they cause neurochemical responses in your body. But they are not reality. I was wrong.  

It turns out that your thoughts and ideals are your version of reality. Your current life outlook continues to evolve along the lines of your early programming or “filter.” It is why we become so attached to our politics, religion, belief systems, etc. It is also the reason that humans treat each other so badly based on labels.  

One example, amongst an endless list, was how we locked up “communists” during the McCarthy era of the 1950’s and 1960’s. It is also why so many minority groups are persecuted and often treat each other badly. 

It is critical to understand that these are attitudes and behaviors that you cannot see because they are inherent to who you are. It is also maybe the greatest obstacle to people getting along. We are hard-wired enough that we don’t recognize or feel these patterns -- it’s just what we do. It’s behavior that sits under many layers of defenses and has to be dug out by each person.  

Our family-influenced habits and actions are much more obvious to our spouses and immediate family than they are to us. We can only get in touch with them through counseling, seminars, psychotherapy, self-reflection, spousal feedback, etc. What you are not aware of can and will control you.  

Slowing Down 

Here is an example of awareness I learned at work. A few years ago, before I retired as a spine surgeon, I became aware that I consistently started to speed up towards the end of each surgery. I also realized that over the years, probably 80% of my dural tears (the envelope of spinal tissue containing the nerves and cerebrospinal fluid) occurred in the last 30 minutes of a long surgery.  

The fatigue factor was part of the problem, but speed was more critical. I still didn’t notice that I was speeding up. I needed feedback from my partners or assistants, so I asked them to act as my coaches. I’d stop for a few seconds and say, “The difficult part of this case is done. It would be easy for me to relax and hurry to finish. Please speak up if you see me starting to rush.”  

Every move in spine surgery is critical, so I had to make the choice to consciously slow down. The end of each surgery is just as important as the beginning and middle. My complication rate dropped dramatically when I became more aware of what I was doing. 

This is a brief overview of how awareness plays a role in successfully navigating daily life. It’s something of a paradox, because when we are truly immersed in the moment there are no levels of awareness. It’s just complete “engagement-in-the-present-moment” awareness.

There are many layers to this discussion, but I hope this is a good starting point for you to understand the importance of mindful awareness.  

Dr. David Hanscom is a retired spinal surgeon. He recently launched a new website – The DOC Journey – to share his own experience with chronic pain and to offer a pathway out of mental and physical pain through mindful awareness and meditation.

What Is the Best Kind of Face Covering?

By Dr. Lynn Webster, PNN Columnist

As we learn more about COVID-19, top health officials have updated their advice about how we can protect ourselves from the virus.

On February 29, U.S. Surgeon General Jerome Adams, MD, tweeted: "Seriously people- STOP BUYING MASKS! They are NOT effective in preventing general public from catching #Coronavirus."

By July 20, Adams had changed his mind and was urging the public to “wear a face covering," although he still believes that wearing a mask should not be nationally mandated.

The Centers for Disease Control and Prevention also recommends wearing face masks when we are out in public and social distancing is difficult to maintain, or when we are around people who do not live in our household. So does the Food and Drug Administration.

There are different types of face masks, though, and some work better than others.

N95 masks provide the best possible protection, followed by surgical masks, but they should be reserved for healthcare workers. Personal protective equipment (PPE) is still in short supply globally because of hoarding, misuse and increased demand -- which puts healthcare workers and their patients at risk.

Members of the public can buy or make their own cloth masks to wear. Laboratory tests have shown that, when worn properly, cloth masks reduce the spray of viral droplets.

Some individuals, however, find it uncomfortable to wear a mask, or they may have a medical condition or disability that makes it difficult for them to breathe. Face masks may also fog up eyeglasses, irritate skin and inhibit communication by muffling the voice. People also frequently touch their faces to adjust or remove their masks, and that may increase the risk of infection.

Not all face masks provide equal protection. At best, cloth masks can be as effective as surgical masks. But using some variants, such as “neck gaiters” made of a polyester spandex, may even be worse than not wearing a mask at all.

Neck gaiters are less restrictive than masks, so they may be more comfortable. But their porous fabric breaks large viral particles into smaller ones, and that may allow them to linger in the air for a longer period of time. That makes them risky to the wearer and people around them.

Face Shields May Be Better Alternative

Jennifer Veltman, MD, chief of infectious diseases at Loma Linda University Health, recommends face shields made of clear plastic or plexiglass to people who are unable or unwilling to wear a mask. According to Veltman, if someone coughs 18 inches from you while you are wearing a face shield, the viral exposure is reduced by 96 percent.

Dr. Amesh Adalja, a senior scholar with the Johns Hopkins Center for Health Security, believes that face shields may eventually replace cloth masks because they are more comfortable to wear and easier to breathe with. And because they extend down from the forehead, face shields protect the eyes as well as the nose and mouth. That can be important since viruses can enter the body via the eyes. It is also easy to wipe face shields clean and reuse them.

Dr. Frank Esper, a pediatric infectious disease specialist at the Cleveland Clinic, agrees that face shields have many benefits over cloth masks. However, they also have drawbacks. For example, he points out that viruses survive longer on plastic face shields than on cloth masks. Also, if a person wearing a face shield coughs, viral droplets can escape because of the gap between the shield and the mouth.

Dr. Anthony Fauci, the nation’s top infectious disease expert, says, "If you have goggles or an eye shield, you should use it. It's not universally recommended, but if you really want to be complete, you should probably use it if you can.”

White House coronavirus response coordinator Dr. Deborah Birx may have the best recommendation of all: wear a cloth mask and a face shield simultaneously. The mask, she says, protects others, while the face shields protect wearers.

Advice about how to protect ourselves will evolve as we learn more about the virus. We’ll be needing face coverings for an indefinite time period, so it is wise to become familiar with the different options for protecting yourself and your family.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

The Dismal Trajectory of Covid-19

By Roger Chriss, PNN Columnist

The coronavirus pandemic continues to sweep across the United States. So too does misleading information about the pandemic and its likely trajectory.

“We have fewer deaths per capita than the United Kingdom and most other nations in Western Europe, and heading for even stronger numbers,” President Trump said in a press briefing this week.

Although the U.S. has a lower per capita death rate from Covid-19 than some European nations, the president’s claim is both mistaken and simplistic. Worldwide, the U.S. ranks fourth in deaths per 100,000 people, according to the Johns Hopkins Coronavirus Resource Center.

More important is the trajectory of the pandemic. European nations were hit hard by the coronavirus early on. For example, Belgium, Italy and Spain saw most of their deaths in March and April, and almost none since.

It is more informative to look at how countries have done after the initial onslaught. In other words, what are the trends since May 1st?

The trends in the U.S. are dismal, with only Brazil and India beginning to compare. According to STAT News’ Covid-19 Tracker, the U.S. has had over 100,000 deaths since May 1. Spain, by comparison, has had 3,600 deaths; Belgium: 1,300; Sweden: 3,000; Italy: 7,000; and the United Kingdom: 19,000 deaths.

In other words, the U.S. has had about three times as many deaths as all the other countries listed above combined, whose population is 192 million or about two-thirds that of the U.S. Only the United Kingdom has a comparable rate of increase in deaths.

Trends for confirmed cases since May 1 are even worse. Back then the U.S. had just over 1 million coronavirus cases. It has since more than quintupled, now totaling over 5.2 million cases. In that same time period, infections in the UK doubled and most other European countries barely added any.

Disease trajectories look even worse for the U.S., which keeps adding more than 50,000 new cases daily, despite testing rates falling by over 10% since mid-July. On August 11, the U.S. saw about 1,500 deaths, more than the total number of deaths in Belgium since May 1.

A More Realistic Case-Fatality Rate

Covid-19 deaths lag new infections by about four weeks. This means the total deaths today can be divided by the total number of cases from four weeks ago to determine what the death rate is.

Covid Tracking data shows the U.S. had 145,245 deaths as of July 31. Four weeks prior to that, on July 3, there were 2,786,467 cases. This gives a case-fatality rate of 5.21% for those dates, higher because of the temporal adjustment that accounts for how Covid-19 behaves.

Moreover, because of more testing, the U.S. has greatly increased its total number of confirmed cases, which in turn lowers the case-fatality ratio. In other words, improvements in the case-fatality ratio are due to testing rates rising even faster than death rates, and not because of an effective pandemic response.

Further, there is considerable under-reporting of deaths in the U.S. For instance, some states have updated their numbers with backfill deaths, as New Jersey did with 1,800 deaths in June, Texas did with 631 in July, and Florida did with dozens last week.

It is also informative to look at the total number of deaths. A new analysis by The New York Times estimates that there could be as many as 200,000 excess deaths attributable to Covid-19 by late July.

Lasting Symptoms

We’re also learning that people who recover from Covid-19 often have symptoms that linger long after the active virus goes away. The CDC reports that about a third of patients with Covid take more than three weeks to recover.

Dr. Anthony Fauci, told STAT News that many survivors suffer from profound exhaustion, muscle pain, headaches, and have trouble thinking and remembering – symptoms that are “highly suggestive” of myalgic encephalomyelitis, the chronic illness commonly called chronic fatigue syndrome or ME/CFS.  

The coronavirus pandemic is now recognized as being as deadly as the 1918 flu pandemic. The worst may yet lay ahead. CDC director Dr. Robert Redfield recently warned that when autumn arrives and the flu season returns, the U.S. could be facing the “worst fall” in its history if more Americans do not adopt prevention measures like wearing masks and social distancing.

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

Does Transparency in Pricing Really Lower Healthcare Costs?

By Barby Ingle, PNN Columnist

Each year I get asked to support multiple legislative bills that could impact the chronic pain community. I look through them, think them through, and have written, called, testified and shared many over the years.

But sometimes a bill I supported comes back to haunt me as a patient. The intended consequences are not what I thought they would be.

Such is the case in Arizona, where I live. A state law was passed in 2013 calling for transparency in healthcare pricing (HB 2045). The law requires most healthcare providers to tell patients the “direct pay price” for a service or procedure. I always thought it was a good thing to have transparency in pricing and for patients to know what their responsibility is, so I supported the bill.

In 2019, Arizona passed another law (HB 2166) that authorized providers to collect “advance payments” from patients before a service is performed and without waiting for insurers to pay. The new law was quick to be adopted and providers have already started using it more than expected. This is causing an issue in getting the healthcare we need in a proper and timely manner.

The law really didn't affect me until this year, when I went through all the testing and multiple office visits with a new provider. Then I was called to the office of the “scheduling manager.” This was right after the doctor told me that I need a procedure on my bladder. I have an issue known as neurogenic bladder, where I lose control of my bladder nerves and muscles.

In the office, the woman wrote on a piece of paper the cost of the procedure ($30,000) based on my insurance (Medicare) and how much I would have to pay in advance, which was $6,000.

Before the law went into effect, I could pay the bill over time and get the procedure done when I needed it. But now, she says, I had to pay the entire $6,000 before even scheduling the procedure. I do not have $6,000 to pay upfront, so I am unable to schedule it.

New Hospital Rules

Arizona is not the only state that has passed healthcare price transparency laws; California, Connecticut, Louisiana, Maine, Maryland, Nevada, Oregon, Tennessee and Vermont have similar laws.

Federal rules are slated to go into effect in January, 2021 that will require hospitals to disclose their price information, including their negotiated prices with insurers. It is part of an effort by the Trump administration to increase price transparency in hopes of lowering healthcare costs on everything from hospital services to prescription medicines.

The federal efforts are controversial and have already faced court challenges. For good reason, seeing how transparency is being implemented in Arizona.  

Both HB 2045 and HB 2166 are good examples of bills I advocated for that are now being used against me and others in the chronic pain community who are low income or under-insured. It’s just a new way to stop healthcare or slow it down. Instead of having insurance companies delay care with prior authorizations and step therapy -- which I have been through as well -- they stop you at the doctor's office now.  

The same thing happened when I came down with Valley Fever pneumonia this past November. My provider ordered chest x-rays, but before I could get them, I had to pay my portion of the bill. I had to borrow money to get the x-rays done.  

Turns out I was way sicker than my provider thought and he apologized afterwards. Once I was diagnosed, follow up x-rays were covered, except when one lady was at the desk. She always charges me and says she has to because of the price transparency rules.  

I am hearing more and more stories about HB 2166 being used against the chronic and rare disease communities. As I said, it is odd to not want full transparency, but I would rather have access to healthcare when it is needed and then work on paying the bill afterward. Otherwise, like me, many of you may not receive the care you need, making our health worse and more expensive. 

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

Finding Pain Relief in a Virtual World

By Madora Pennington, PNN Columnist

I am sitting on a deserted beach in Tasmania, listening to the gently lapping waves. All my worries fade in just 3 minutes.

While on my couch, I am touring the famous sites of London. Have I been on vacation? I feel as if I have.

I am by a creek in Bavaria. Water gently crashes against the rocks. Leaves fall to the ground. In four minutes, I am in state of joy.

Underwater with a school of dolphins, twisting my head to get the best views as they swim above me and all around, I forget anything that bothers me, physical or mental.

How can I be in so many places? I am using a virtual reality program designed to relieve chronic pain. I love it. I look forward to doing it every day.

Later, when I am out and about, a sound I heard during my VR sessions, perhaps the swaying of a tree, makes my body relax without effort.

The AppliedVR headset I am using looks like a blacked-out snorkeling mask. It came with a warning not to expose it to direct sunlight, and to take great care not to scratch the lenses. The company loaned me the device to try at no cost and with no stipulations for this review.

Virtual reality (VR) had its start as entertainment in video gaming. Headsets have speakers or earphones, and are usually connected to a joystick or hand controller. When the user moves their head, tracking software shifts the images, providing an immersive experience into a full 360-degree view of a 3D world.

Besides gaming, VR has a growing number of practical uses. VR technology is used to teach dangerous jobs like piloting or to give doctors simulated practice at surgery. The U.S. military uses VR to train soldiers to fight and build mental resilience for battle. Ford employees use VR to inspect and look for problems in virtual automobiles before they are even manufactured. Architects and engineers use it to evaluate and find problems in their design work.

In a medical setting, VR therapy was first used in caring for patients who suffered burn wounds, which can be so painful that even opioids can be insufficient. A study found that VR, when coupled with pain medication, provided burn patients with significant relief.

More Than Just Distraction

How does VR make such a difference in pain?

“The most acceptable theory is the Gate theory of attention. It postulates that VR reduces the perception of pain by absorbing and diverting attention away from pain,” says Dr. Medhat Mikhael, a pain management specialist.

But there’s more to it. Dr. Brennan Spiegel, director of Cedars-Sinai's Health Service Research, completed a VR study on 120 hospitalized patients in 2019, which showed that VR significantly reduces pain. It was most effective for severe pain.

“Virtual reality is a mind-body treatment that is based in real science. It does more than just distract the mind from pain, but also helps to block pain signals from reaching the brain, offering a drug-free supplement to traditional pain management," Spiegel said.

Short-term, acute pain is a different beast than chronic pain. Only a few studies have been done using VR to treat chronic pain, which can overwhelm the nervous system, making the body even more sensitive to and aware of pain. This cycle can become so entrenched it can cause the body to interpret benign stimuli, such as the light brush of fabric against skin, as painful.

Early studies on VR for chronic pain are promising. In a study published in 2016, chronic pain patients had an average 60% reduction in pain from VR treatment. A third of the participants experienced total pain relief while doing VR sessions. They had a wide variety of conditions, such as spine pain, hip pain, myalgia, connective tissue disease, interstitial cystitis, chest pain, shoulder pain, abdominal pain and neuropathy. 

Another study recently found that VR reduces pain and improves mood and sleep in people living with fibromyalgia or chronic lower back pain.  

Pain Drifts Away

I’ve had a lifetime of chronic pain from the collagen disease, Ehlers-Danlos Syndrome. My body is very weak and flimsy. Having chronic pain and disability sometimes makes me feel resentful and betrayed by my own body.

In one VR session, I stare into the heavens. I am shown a projection of a human body and nervous system. A kind, encouraging woman explains simply and compassionately the phenomenon of pain. I hate my body less in two minutes.

Ordinarily, I would never play a video game. I don’t like cartoons. Meditating makes me anxious. I find it difficult to even lose myself watching a movie. I would not have thought I would respond well to virtual reality. But from the first brief session, I did.

I learned how to calm and balance my nervous system in an animated forest. Gently encouraged to breathe in time with a giant whimsical tree, the ground and surrounding plants change, becoming ever more colorful each time I exhale. The loving woman tells me I have changed myself and the outside world. I have to agree.

Some sessions are games that teach me to redirect my attention away from pain. In a cartoon winter wonderland, I shoot snowballs at happy teddy bears, who giggle when I hit them. I have made the teddy bears and myself happy.

In others programs, I swim with jellyfish. Or sunbathe on a beach in Australia. Or sit by a stream in the snowfall. You can watch a sample of these programs below.

The benefits of VR therapy continued for me after the sessions ended. When pain or panic about pain began to set in, I found it drifts away rather than latching onto me like it used to.

After a couple weeks of VR, during a visit to physical therapist, I noticed I was no longer afraid of her touching my neck and back, and actually enjoyed it.

VR reminds me of times in my life when I was fully engaged in the moment and overwhelmed by wonder or beauty. As a child swimming in the ocean, once I was surrounded by dolphins. They clicked and called to each other. I immediately forgot how cold I was and how my wet-suit was cutting off the circulation in my hands.

VR took me back to other transcendent moments of my life, like playing in an orchestra, surrounded by instruments producing layers of organized sound. Standing in front of Van Gogh’s Bedroom. A ride at Disneyland. Falling in love.

My only criticism of VR is the weight of the headset. The device is heavy and could be difficult for someone with neck or head pain to tolerate.

AppliedVR’s technology is being used in hundreds of hospitals, but it is not yet available for home use. The company hopes for a broader launch in 2021, but getting insurance coverage will be key.

"We know that living with and managing chronic pain can be a debilitating and costly challenge that is only exacerbated by the COVID crisis.  As such, we are focused on achieving our vision of delivering safe and effective VR therapeutics into the home where the need for non-opioid chronic pain treatment options is greatest,” says AppliedVR CEO Matthew Stoudt.

“We are now focused on partnering with payers to demonstrate how our chronic pain VR therapeutic improves health outcomes, reduces costs and empowers patients to lead their best lives.  This is the key to making VR a reimbursable standard of care for pain management."

In addition to pain, VR therapy is also being used to relax people going through dental procedures, chemotherapy, physical rehabilitation, phobias, anxiety and post-traumatic stress disorder (PTSD).

You cannot talk your brain out of perceiving pain, but with VR it finds other, better things to do than just focus on pain. Cognitive behavioral therapy and self-soothing techniques do that too, but VR disengaged my brain from the pain perception cycle at a much deeper level, just as pain once hijacked my thoughts and attention.

Madora Pennington writes about Ehlers-Danlos Syndrome and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

How to Say Goodbye When Someone is Dying

By Dr. Lynn Webster, PNN Columnist

Once, a patient with chronic pain due to an immunodeficiency made an appointment with me to say goodbye. For years, he had received intravenous therapies for his infections, but they had all stopped working. His other doctors had already told him that nothing more could be done, and he had little time left to live. He came to let me know that he appreciated what we had done for him.

It was a surreal moment. The young man wasn’t in agony, and he seemed to be at peace with the inevitability of his death. However, I was caught unprepared. Since I wasn't sure how to respond, I simply acknowledged his words with a "thank you." We shook hands and he departed. That was the last time I saw him.

Last week, a colleague of mine sent out an email to a small number of his professional associates. He told us that he is very ill. Clearly, his implicit message was that he might never see us again. 

As I reflected on his message, I felt unprepared again. I wondered how I should respond. How would I say goodbye? Should I even broach the topic? This might be my only chance to let him know that I'd always considered him a mentor. But would he become despondent if I appeared to eulogize him? Would it be hurtful to express my sadness that we might never speak again?

I certainly didn’t want to add to his suffering. Perhaps I should ignore the gravity of his illness and focus on how I hoped he would recover soon.

But that would be dishonest. He is a physician, too, and always modeled treating his patients with empathy and compassion This was the part of his character that I felt most drawn to. He is a doctor who healed as much by listening to his patients than by any other therapy.

Asking the Right Questions

I decided to tell my friend what an important role model he has been for me, but I also had a question for him. Having treated many terminally ill patients, I have learned that most people who are dying have hopes for themselves, as well as the loved ones they are leaving behind. Therefore, I asked my physician friend whether he had any hopes he wanted to share with me. He told me he had two wishes.

“As I have been reflecting upon my personal and professional life, my first hope is that my presence really made a positive difference in people's lives. That would be my legacy. The outpouring of affection, goodwill and positive comments that I have received from ex-patients, friends, family and colleagues has made it clear that I have succeeded in that,” he said.

My friend also expressed his hope for a change in our political situation. He mentioned the anger, frustration and hopelessness he feels watching American society fall into two warring ideological camps. His hope is that the young people of today will lead us into a better future.

Opportunities for Closure

COVID-19 has forced me to think about the reality that death can catch any of us by surprise.

As I write this, we are in the midst of a pandemic that has infected more than 17 million people and taken more than 680,000 lives worldwide. Many of the COVID-19 victims died alone and didn't get a chance to say goodbye to their loved ones.

Even in ordinary times, most of us don't get to say goodbye. We often deny the reality of death as life draws to a close. "You'll feel better soon," we say, either to make ourselves feel better or to avoid the topic. Even when we are allowed to be at the bedside of someone who is dying, we often lack the courage to convey our true feelings. Honesty can be too painful during those moments.

I remember saying goodbye to my dying father. Lying with him on his bed in his home, I asked my father if he was afraid. Many of us refrain from expressing grief at moments like that, because we worry that we might make the dying person feel worse. But I could not keep from crying.

In The Four Things That Matter Most, author Ira Byock, MD, identifies the messages he considers most important to communicate to loved ones near the end of life: “Please forgive me. I forgive you. Thank you. I love you.” Expressing these sentiments can help create a sense of mutual peace and completion.

Saying goodbye does not wish death on anyone. It acknowledges the richness of the relationship that has been. That is what I felt when I told my dad I loved him, which at the time was my way of saying goodbye. It is also how I felt when I brought closure to the relationship with my friend who emailed me.

Congressman John Lewis, the noted civil rights leader, expressed hope for the future in a New York Times op-ed published shortly after his July 17th death. He said, “Though I am gone, I urge you to answer the highest calling of your heart and stand up for what you truly believe.”

Perhaps we should consider following Lewis's example. By daring to acknowledge what is happening and to say goodbye, we are bravely addressing the highest calling of our hearts. We also have the opportunity to honor all those who touched us and made us who we are.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

10 Ways To Survive Home Isolation

By Barby Ingle, PNN Columnist

On November 2nd last year, I fell very ill. It was a Saturday evening. I was fine and then I was having trouble breathing. Two days later I was diagnosed with pneumonia and on the 18th I was told that I had Valley Fever.

My immune system is already weak due to multiple chronic conditions, and catching any kind of acute cold or flu is life-threatening for me. I was put on a breathing machine, which was new for me, and advised to stay home to avoid further infections.

Being homebound is something I have been doing for a very long time. By the time Covid-19 struck and a push for social and physical distancing began, I had already been isolated for years and ultra-isolated since November. I still have Valley Fever symptoms, which are similar to coronavirus, and still have a mass on my upper right lung. I have tested negative for both Covid-19 and its antibodies.

Now that being physically isolated is a thing, many are asking me for advice on what to do or how to make it through self-quarantine. Spending so much time at home, I’ve found that I have a lot of energy and have to turn to other activities to keep my spirits up. These are what I’ve come up with.

1. Catch up on reading: Not everyone is ready to write a book, but reading one is something most of us can do. Expand your mind and educational knowledge by reading about subjects that have interested you and would like to learn more about.

2. Dance party for one: It doesn’t matter if you can dance or not, no one is watching! Just put on some music and move your body. Movement can help circulate blood, increase endorphins and improve your mood. I always love a good spontaneous dance party!

3. Games on your phone: For this you need a smart phone. My personal games are the free apps that keep my mind working. I like Solitaire, Drop the Number, Pull the Pin and Woodoku.

4. Netflix: I never saw the need for Netflix until I had it. When people reached out and asked what they could do to help, this was one of the tools someone set us up with. We have watched more TV shows in the last 9 months than the previous 5 years. Everything from great dramas like Ozark and The 100, to comedies like You’re Dead To Me, Shameless and Happy! I’ve also enjoyed reality shows such as 100 Humans, Alone and Naked and Afraid.

5. Organize your medical records: For those of you who have thick case file like me, what better time to order and organize your medical records? You can also address any mistakes in those records and be better prepared for future care by staying organized.

6. Social media: We may be physically distant, but socially we can still be engaged. When I am up to it, I post updates. I’ve also been sharing messages and articles a lot more since I am not creating as much content during this period. I believe my followers like it and I know the people I share appreciate it as well.

7. Start a gratitude journal: Isolation can lead to negative feelings, such as being scared, anxious, mad and sad. This can have an impact on you and your loved ones. Taking the time to write a gratitude list of the positive things in your life and the things you can still do (even if it is just taking a shower) can be a good tool for keeping a positive attitude. A gratitude journal can also be something you look back on to help see all the good in your life, even in the toughest of times.

8. Start a new project: You could learn a new hobby, craft or language, or develop your appreciation for art. They say 21 days of something will improve your skills. When will you ever have this much time to do something, even if it is just a little each day?  

9. Interview family members: With the passing of all of my grandparents and parents in recent years, I wished I had done a legacy video with each of them. I asked my mother-in-law do an interview with me and turned it into a Christmas present for both of her boys and our nephews. It’s a great way to get a living picture that is enduring, long past the time we are here on earth. It also gives us more social contact with the older members of the family.

10. Rest! This one is the best for me. Because of how tired I am, I give myself permission to rest as much as possible and get nothing much done. My days are filled with resting and relaxing most of the time. There is no pressure or stress to do it any other way.

Do you have other ideas on how to survive isolation and stay engaged with the world?  Please share your thoughts in the comment section below.

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

Forced Opioid Tapering Is Risky and Unethical

By Roger Chriss, PNN Columnist

Prescription opioid use has come way down from its peak in 2012. Fewer people receive an initial opioid prescription, pill counts have been lowered, and more people are being taken off opioids.  The American Medical Association recently reported that there was a 37% decrease in opioid prescribing from 2014 to 2019.

The goal of this was to reduce the harms associated with opioid pain medication amid an ongoing drug overdose crisis. But there is no justification for forced opioid tapers. As PNN reported last year, outcomes for patients taken off opioids are not necessarily good. And despite an ongoing focus on reducing prescription opioid use, there is still no established deprescribing strategy or method.

A new study looked at a dozen randomized controlled trials for deprescribing opioids for chronic non-cancer pain. Researchers found that reducing or discontinuing treatment did not reduce opioid use in the intermediate term. It also didn’t increase the number of patients who stopped taking opioids.

After looking at the evidence, the authors of the systematic review concluded that the were unable to draw “firm conclusions to recommend any one opioid-analgesic-deprescribing strategy in patients with chronic pain."

Ethically Unjustified

But even if we knew how to taper patients on prescription opioids, it would still not be ethical to do so. Forced tapers offer relatively few benefits for the patient and may carry serious harms. Policies promoting opioid tapering have nonetheless proliferated in recent years, including one in Oregon that was tabled after a public outcry.

In a recent paper in The Journal of Law, Medicine & Ethics, physicians Stefan Kertesz, Ajay Manhapra, and Adam Gordon argued against the forced tapering policies being promoted by public agencies.

“Neither the 2016 Guideline issued by the Centers for Disease Control and Prevention nor clinical evidence can justify or promote such policies as safe or effective,” they said.

Specifically, Kertesz and his colleagues said “the provider is trained never to treat a patient as merely a means to an end.” In other words, involuntary tapers with the goal of satisfying prescribing metrics or state-mandated statistics are unethical.

A more detailed analysis of the ethics of deprescribing is taken up by Travis Rieder, PhD, author of the book, “In Pain: A Bioethicist’s Personal Struggle with Opioids.” In a new commentary in the AMA Journal of Ethics, Rieder concludes that nonconsensual tapering is “clinically and ethically wrong” because it exposes so-called legacy patients who are dependent on opioids to uncontrolled pain and withdrawal.

“Forcibly tapering otherwise stable patients off high-dose, chronic opioid therapy reveals that this practice might have an effect that is the opposite of what public health is calling for: it may be a harm expanding intervention, exposing those who have long received opioid medications variously to worsened pain, withdrawal, social instability amidst untreated dependence, or loss of medical care relationships,” Rieder said.

“Taking such risks into account, continuing to prescribe high-dose opioid therapy for a legacy patient does not clearly constitute ethical or legal misprescribing.”

‘Large-Scale Social and Medical Experiment’

There is little doubt that prescription opioids involve serious risks and lead to harm for some patients. In some urgent cases, a forced taper may be justifiable in light of specific risks to an individual. But in general, forced tapers not only introduce new risks and create new harms, but they also damage the doctor-patient relationship and deny the patient’s status as an individual.

Stanford pain psychologist Beth Darnall, PhD, calls forced tapering a “large-scale social and medical experiment” being conducted without sufficient evidence on how to do it the right way.

“You may have a patient that has been on a stable dose of opioids for 10 years, and then you start de-prescribing. We are now exposing them to new risks for opioid overdose, for suicidality, for actual suicide, for withdrawal symptoms, for increased pain,” Darnall told The Guardian.

It's worth noting that both Darnall and Rieder were recently named to a new CDC panel that will advise the agency as it prepares to update its 2016 opioid prescribing guideline.

Physicians already have a wide variety of tools to reduce risk and improve outcomes without resorting to the ethically unjustifiable approach of forced tapers. It’s time to emphasize those tools and underscore the ethical importance of patient outcomes.

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

What If You Can’t Wear a Face Mask?

By Carol Levy, PNN Columnist

Of all the possible repercussions of trigeminal neuralgia -- all the things it keeps me from doing because of the pain -- I never thought it could make me a possible danger to others.

But suddenly I am. Because I cannot wear a face mask.

Because of trigeminal neuralgia (TN), I cannot tolerate any touch to the affected side of my face. The weight of a mask not only causes that side of my face to swell, as though I had been punched, it causes severe pain.

I assumed that everyone with TN has the same issue, probably not the swelling, but definitely the increased pain. I went to our local online TN support group expecting posts such as, “I am worried. I can't mask. What should I do?”

But there was only one post with a link to an article entitled, “What to Do If You Can't Wear a Face Mask.” I was excited expecting answers, but it was not about what to do if you can't wear a mask — more about ways that you could wear an alternative facial covering like a bandana. Nothing about medical or psychological issues that make wearing one difficult.

The article concluded with a list of 3 groups the CDC says should not wear a mask: Toddlers and babies under the age of 2, people with a health condition that causes trouble breathing, and those who can’t remove a face mask without help.

Omitted completely was any mention of medical issues like mine or those who cannot tolerate the touch of a mask against their skin. Don’t fit it into any of the 3 groups? The advice from an emergency room nurse was to stay at home as much as possible, rely on delivery services or loved ones to get essential items, and only go out when you won’t encounter other people. 

That’s good advice. But I, like many seniors and the disabled, have no one to do my shopping or other errands for me. I don’t have the funds to go the delivery route and I can’t go out at night, because my cataracts make night driving dangerous.

So I go out during the day. I made a t-shirt which reads, front and back, “Can’t mask due to medical issue. Trigeminal neuralgia.” Thankfully, people have been very nice to me, with one person even saying, “I am so sorry you need to wear that shirt.”

Recently, I went to a farmers market. A woman looked at me and got visibly excited. Instead of a tongue lashing, she said, “You have that? So does my husband.”

We had a nice conversation, but for all our similarities, he was able to mask. Which takes me back to my first point.

How often have we lamented that no one understands? That our families, friends and colleagues don’t accept why we so often have to say ‘no’ to extra work, a day at the park or other invitations?

Because of the masking issue, I learned maybe we too don’t always understand. I have seen people in support groups question someone else's report of their pain, how it feels, where it is located, and how they experience it. I never quite understood how anyone could question someone else's pain report.

Now I get it. Our diagnoses may be the same, but our pain experience may be very different. Mine may well not be the same as yours in how it feels, how I experience it or how it manifests itself in my body.

This was a new and important lesson for me. About the only time I can say, “Thank you, coronavirus.”

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.

Genetic Studies Could Pave the Way to New Pain Treatments

By Dr. Lynn Webster, PNN Columnist

Millions of Americans order DNA test kits to determine their ancestries. Knowing where you come from can be entertaining.  However, DNA testing can also help identify your risk of developing some diseases, including chronic pain.

Prenatal testing for genetic disorders is common. But genetic testing is also increasingly used to determine the risk of developing certain diseases or potential responses to specific drugs.

Currently, little is known about how to use genes to make an individual more or less sensitive to pain, or to learn the likelihood that someone will respond in a particular way to an analgesic based on their genetics. The good news is that we are on the cusp of gaining more information about the genes that control pain and pain treatments, and that knowledge should allow us to develop targeted pain therapies.

Most physicians still believe that everyone experiences pain in the same way. Research recently published in Current Biology discovered a gene—the so-called "Neanderthal gene"—that is associated with increased sensitivity to pain. Recognizing that a mutation of a specific gene can influence pain perception may be illuminating for many members of the medical profession.

The Individuality of Pain

Pain specialists have known for a long time that given the same stimulus, some people feel more pain than others. The truth is, there are several genes besides the Neanderthal gene that determine how an individual experiences pain. Some genes increase our sensitivity to pain, while other genes decrease it. Some genes influence how pain is processed, while other genes determine an individual's response to an analgesic.

The ability for an analgesic to provide pain relief in an individual is partially determined by the genetics of the receptor to which the pain medication binds. These genes are different from pain-sensitivity genes. For example, oxycodone may be very effective in relieving pain for one individual, but only partially effective for another.

Optimal pain relief requires recognition that each individual responds uniquely to a given analgesic. Doctors are beginning to provide gene therapy for cancer patients. Advancements in research may someday allow us to do the same for patients with pain.

The array of pain responses to the same stimulus is a major reason why one-size-fits-all dosing of pain medications is flawed. A given dose may leave some patients undertreated and others over-treated. Unfortunately, regulators who set arbitrary dose limits fail to understand or consider this biologic variability. 

Differing clinical responses to pain stimuli and medications underscore the need to individualize therapy. Knowing more about the biology of pain can help us to understand each individual’s response to painful stimuli and the variable response to any therapy.

The Heredity Nature of Pain

How we experience pain is a result of both environmental and genetic features. The genetic factors are what we inherit. Environmental factors — which we develop rather than inherit — include cultural attitudes, emotions, and individual responses to stress. Our personality and life’s experiences are included in the environmental factors that contribute to our experience of pain. Therefore, pain is a result of genetic and environmental interactions. Both can make an individual more or less sensitive to stimuli or analgesia. It is a complex and dynamic process.

The so-called Neanderthal gene is not a new discovery but was newly recognized in Neanderthals. The discovery is interesting, because it implies the gene has an evolutionary purpose. The gene is known as SCN9. There are several pain syndromes associated with the genetic mutations of the SCN9 gene, including some types of back pain and sciatica. Mutations of this gene can result in the total absence of pain or a heightened pain expression. The type of mutation determines the phenotype (or personal characteristics) of our response to a painful stimulus.

The Genetics of Analgesia

It is unclear how Neanderthals benefited biologically from increased pain sensitivity. As we know, acute pain elicits an alarm and is considered protective. It teaches us to avoid dangers that can threaten our life, and prevents us from walking on a broken leg until it heals sufficiently to bear our weight.

Evolution may not have been concerned about the effects of chronic pain. The Neanderthals' limited life expectancy, and the fact that their survival depended on strong physical conditioning, may have made chronic pain a non-issue. Chronic pain may have made survival difficult, or even impossible, for the Neanderthals.

The recent discovery that Neanderthals had the SCN9 gene should not be surprising, given the fact that modern humans shared a common ancestor with Neanderthals. The Neanderthal gene study is of particular interest to me, because I am working with several companies that are exploring potential drugs to affect the function of the SCN9 gene. The companies have different approaches, but they all are trying to find a way to dial down an individual's sensitivity to painful stimuli.

Since the SCN9 gene can be responsible for the total absence of all pain, as well as several extreme forms of pain, it may be reasonable to target the SCN9 gene to modulate pain.

My hope is that manipulation of the SCN9 gene will reduce pain sensitivity, making it easier to control pain by adjusting the dose and type of drug we prescribe.

It is possible one or more drugs that target the SCN9 gene will be available within the next 4-6 years. If that occurs, it could be game changer for people in pain. We can then thank our Neanderthal ancestors for the evolutionary gift. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

The Wisdom of CRPS: Making My Final Cancer Treatment Decision

By Cynthia Toussaint, PNN Columnist

A year ago when I got my triple-negative breast cancer diagnosis, the second dreadful thought that ran through my head – perhaps worse than the Big C – was that for any chance at survival I had to once again enter the horrific world of western medicine, a system that for decades had brought me only misery when it came to Complex Regional Pain Syndrome (CRPS).

After five months of researching and contemplating what might be my most hopeful and least harmful treatment strategy, I began chemotherapy with a healthy level of trepidation. While chemo torture can only be described as indescribable, I was stunned and pleased to do well out of the gates. In fact, my tumor disappeared during week one.

In all, I miraculously completed 17 chemo infusions while escaping lethal complications, only because my integrative doctor, Dr. Malcolm Taw, kept a check on my oncologist’s over-treatment. Let it be known that when some people die from “complications of cancer,” they’re really dying from doctors taking that lethal risk due to money and/or hubris. A personal example is the week my infusion nurse refused to administer chemo because my blood count was so low she was afraid I’d get an infection and die.

My oncologist’s goal for me was 18 infusions, a ridiculously high number that I began questioning when I hit twelve. My hair was already growing back, while my body was rabidly flushing the drugs out of my system (don’t ask).

I couldn’t find anyone, in person or on the internet, who’d done more than 12 infusions. Scarier, an oncologist who filled in one morning shared with me that at no time in his career had he seen someone order so many.

My guess is that because my oncologist and the massive health system she works for are aggressively working to prove this chemo regimen is a keeper, 18 would seal the deal for their final report.   

CYNTHIA TOUSSAINT

I reluctantly marched on with this needless torture for one reason. My oncologist fed me a steady diet of fear, western medicine at its best.

To keep me in line, I dealt with verbal assaults like, “Your cancer’s going to grow right back if you take a week off.” Another was the golden oldie, “I don’t like your questions!” And after the last infusion went south, I was speared with, “All of my other patients want to live.”

The reason I didn’t graduate at the top of my chemo class of one was that, while driving home from number 17, my hands and feet felt like they were bursting into flames while fireworks popped. When John got me upstairs to our condo, he took a picture of the beet-red appendages, my expression frighteningly pale.

After being hideously ill for four days, which is typical as side-effects are cumulative, one afternoon I played the piano for a few minutes and out of nowhere my CRPS, mixed with chemo and my new friend, neuropathy, appeared without mercy in my wrists and hands. As of this writing, five weeks later, I’ve had little let up. While my idiot oncologist never took my CRPS seriously, I’m suffering at a level 9-10 pain and laboring to navigate a world built for people with hands.

So much for number 18, which broke my heart. I’m a goal-oriented gal, and desperately wanted closure for trauma release. At infusion centers, people get to know each other, who lives and who doesn’t, and it’s a big deal when a patient completes their chemo course. The nurses do a hip-hip-hurrah, ring a bell and everyone gets to say goodbye and good luck. I gave it my crazy-strong best, but as usual, CRPS made my decision.

And it would make my next.

Despite not getting the last infusion in, I hit a home run. No, a grand slam. Confirmed with follow-up imaging, I’d achieved a clinical “Complete Response” – the best I could do and hope for. Turns out I’m what they call a “super responder.”

Standard of care dictates that with triple-negative cancer, complete response or not, surgery is mandated (lumpectomy and lymph node removal) to confirm all microscopic malignancies are gone.

This knowing had been looming like a dark cloud since my diagnosis. CRPS and surgery don’t make good bedfellows, as the cutting and tissue extracting tends to fire up nerves that can spark a full-blown CRPS flare. My past has taught me my flares can last a month. Or a lifetime.  

Still deeply influenced by my doctor’s fear-mongering, I kept coming back to surgery despite its risks and my gut telling me to go another way. For once in my life, I wished I’d been well enough to do all the goddamn treatments without having to work around my never-ending pain. Bottom line, I wanted my best shot at living.

But live how? After surgery, would I be left with a life worth living?

The pulsating, burning pain in my hands and wrists provided this answer too. My body told me, unequivocally, that surgery would leave me with the mother-of-all pulsating burning pain. Body-wide and never ending. 

Traumatized that I couldn’t make this big decision, my life-partner, John, reminded me that CRPS has made all of my decisions for me. It didn’t allow me to have a child. I still can’t marry John after 40 years. And it eviscerated my career, one I still yearn for every day. I’m angry that my disease boxes me into corners and knee-caps me at every turn.

Even so, I left fear behind and went toward the light. John and I found three studies, including a meta-analysis, that support de-escalating treatment for triple-negative complete responders. While still early and controversial, these studies show that women who choose active surveillance in lieu of surgery post-chemo live just as long and well -- dare I say even better -- than those who go under the knife.

My integrative doctor, and even my surgeon, are strongly backing my decision – as does my pain doctor who wryly commented, “I don’t see any reason to poke the bear.” 

I’m damn certain that the decision I’ve made to forego surgery will be the standard of care in 15 to 20 years – and that I’m the future. I know deep inside that my CRPS, for all of its hell and fury, is pointing me into a smarter, wiser decision than the one fear would have driven me to. 

This “super responder” is in remission, and moving on…              

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities for nearly four decades. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

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Can the Chronic Pain Community Unite Before It’s Too Late?

By Peter Pischke, Guest Columnist

What’s the quiet thing often left unsaid in the chronic pain community? An inconvenient truth that some patients and advocates would rather ignore?

Ed Coghlan touched on it when he closed his nearly decade-old blog, the National Pain Report, with a warning.

“In covering the chronic pain community, in addition to meeting hundreds of really interesting people, it is also evident how the community’s fractious nature holds it back,” Coghlan wrote. “Rivalries, which from where I sit look rather petty, prevent a unified voice for truly addressing solutions in fixing a broken health care system that simply does not work for the chronically ill.”

The truth is the pain community is too often the source of hate and weaponized toxicity. Not just against anti-opiate crusaders, but against each other. It’s a self-inflicted problem that may be the most significant handicap to putting together a united front to convince society to end opioid prohibition.

How bad is the problem? To find out, I interviewed over a dozen patients and leaders in the pain community. Included in this group are medical and academic professionals, civil rights activists and patient advocates. Most requested anonymity.

All agreed that there is an enormous problem of toxic behavior plaguing the movement, in which certain advocates target each other with vitriol and purity tests. The stories shared with me include death threats, stalking, harassment, theft, heckling at conferences and plagiarism.

This toxicity, unfortunately, doesn't stop with them. Mirroring the broader political culture online and following the examples set by strident advocates, some patients engage in rumor mills, back-biting and social media mobbing.

The backbiting does not go unnoticed. For some lawmakers and healthcare providers, the pain community is a by-word for crazies, especially online.

“They see the inner fighting, they see what's going on,” says pain patient and activist Jonelle Elgaway. “They also see that we're not united in any way. They ask me, ‘I see the cancer community, and none of that happens in it, does it?’”

Unintended Consequences

Sadly, some prominent advocates are willing to use the vilest attacks against their perceived enemies. They are often sent scattershot, aimed not only at anti-opioid organizations like Physicians for Responsible Opioid Prescribing (PROP), but people who lost loved ones to addiction and pain sufferers deemed insufficiently dedicated to the cause.

As one prominent physician told us, the vitriol creates unintended consequences that only reinforce the stigma that "patients are crazed addicts" – which hurts our ability to persuade leaders in government and medicine that pain patients need help.

Many of those we talked with have been victims of this hate firsthand. Some have staked their personal and professional reputations defending patients, sacrificing careers, relationships, finances and even their family’s well-being to fight for patient rights. One person sold their house so they could continue doing advocacy work. Another burned almost all of their professional relationships to stand up for patients.

Often working quietly behind the scenes, in places like Congress and the CDC, they are the community's most effective warriors. The recent gains we’ve seen, such as the American Medical Association finally taking a strong stand against the CDC opioid guideline, would not have happened without them. Yet, for their sacrifice, the community has rewarded them with bile.

The toxicity is so intimidating that few we spoke to were willing to go on the record. Many are more afraid of the pain community than they are of the news media or organizations like PROP.

The problem also affects our ability to get prominent people to support our cause. Elgaway points out that anytime a celebrity opens up about having chronic pain, unless they meet a purity test for opioids, they are attacked. For example, when actress Kristen Chenowith joined in a marketing campaign for Belbuca, she became an instant target on social media

“Everybody on Twitter kind of jumped on her. She’s famous and she could have been somebody that maybe could have helped us. And I understand you don't agree with her supporting this drug, but you can't jump on everybody that's trying to do something,” Elgaway said. “You know people are going to be afraid of us. They’re going to go back and tell people that chronic pain community is crazy.”

This circular firing squad reinforces negative stereotypes about pain patients, and pushes advocates and potential allies away. It also creates deep fractures in the community, making its most effective leaders too afraid or unwilling to collaborate. Too often, advocates are more concerned with marking turf and tearing each other up, instead of engaging with decisive action that might create real change. How can a coalition grow if every newcomer is pushed away?

This kind of behavior is foolhardy. Some advocates act as if they are the dominant force on the cusp of winning. But the reality is that despite millions of patients losing access to effective pain care, most Americans are still unaware of the pain crisis. What they do know is the story of the opioid crisis. And the media, government and many medical institutions are still invested in that narrative. 

Losing Focus

So why are patients and advocates doing this? I spoke to Dr. Terri Lewis to understand why the pain community can be so hostile, especially online. She told us the negativity reminds her of people “going through the stages of grief."

“It’s a group of folks who may not realize it, but they use social media to shout into the well and hear their voice echo back to them,” Lewis said.

Another factor Lewis points out is that there’s a fundamental cultural clash between pain patients and medicine. The world of medicine and research is slow, while patients want immediate solutions. When you watch doctors, researchers and regulators at a medical conference, the slowness of the process can seem like an infuriating betrayal. As a friend told me, “To them this is just academic, but to us this is our lives.” 

It is natural that pain patients feel angry at the world. They're often mistreated, denied medication and ostracized from society.

But just because we can understand why patients act badly doesn’t mean that behavior should be excused. Nor does it undo the substantial damage it does to the cause.

Dr. Forrest Tennant, a well-respected pain specialist who has sacrificed much for his patients, is concerned that some advocates have forgotten what’s most important.  

“It’s a group of folks who may not realize it, but they use social media to shout into the well and hear their voice echo back to them.”

— Terri Lewis, PhD

“I'd call for people to try to respect the other person's views. Do the Golden Rule: Do unto others what you'd have them do unto you. I know it sounds simplistic or awfully silly. This is a no-brainer to treat other people kindly,” Tennant said. “We are trying to help people with some very serious diseases that are going to end up with short lives, and we've lost focus on who we are trying to help." 

It isn’t easy to admit mistakes. Everyone makes them, including me.  What matters is that we learn from them and try not to let our egos get in the way. Community heroes like Dr. Red Lawhern encourage reflection and repentance.

“Remember, you can be amazed how much can get done if you don't care who takes the credit," says Lawhern. "Begin with an attitude of humility and the sense that it's not about you.”

Barby Ingle of the International Pain Foundation likens the pain community to a jigsaw puzzle. Every piece is different and sometimes its hard to find where they fit, but to complete the puzzle you need every piece.

“If you want to be the biggest help for yourself and other patients, do what you can do to help those you can help and know that there will be some who don’t want help or believe another way is best. It doesn’t make them not part of the pain community,” Ingle says. “Find or create your niche and work to make a difference, fulfil your goals, and be the best you can be. Be good to yourself and be good to others --even if you disagree.”

If the pain community really wants change, every patient and advocate must self-evaluate and adjust their behavior. We must stop aiming our guns at each other and learn to agree to disagree.

At the end of the day, whatever our disagreements, if we can improve pain care and get meds back for patients, nothing else should matter. We must stop being the community that people fear, and become an inclusive community that welcomes people to join our cause.

Peter Pischke is a freelance journalist and host of the Happy Warrior Podcast. Peter is also a disability activist and chronic pain patient living with intractable pain due to chronic pancreatitis.

This column 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.