What I Learned About Meditation and Acceptance

By Mia Maysack, PNN Columnist

Recently I was asked how I've managed to deal with agonizing pain every day for over 20 years. The answer is far from simple, as it has been an extraordinarily long road that I'll continue to travel for the rest of my life.  

After over a decade of attempting mainstream remedies such as pills, injections, procedures and other therapies, I reached a point of hopelessness that led to contemplating the possibility of giving up. I had become tired and sick of being sick and tired. 

I still am! 

At the beginning of my holistic journey, I felt as though all my options were exhausted. Enough already with the corporate approach to medicine, along with being treated as either a drug seeker or experimental lab rat. 

To be clear, I'm tremendously grateful for all the avenues I've been able to travel, as well as the providers who did what they could to help me along the way. I am even thankful for the doctor who initially misdiagnosed my ear infection as “swimmer’s ear” -- even though it almost cost my life and led to a permanent state of discomfort. 

I wouldn't be who I am without those experiences, nor would I now be in this position to assist others in the treacherous journey that is chronic illness. 

Acknowledging grief, as real a symptom as the hurt itself, was a first step for me. I had to come to terms with knowing what I experienced was not a personal punishment, and also develop a relationship or coexistence with it that was mandatory for my survival.  

After growing in affirmation of those truths, I was then able to wrap my mind around acceptance. That didn't mean I liked the situation and I still don't! My illness doesn't define who I am as a person or where I'm able to go from here -- based on the things that I can control.  

This would be about the time some of you may question the merit of what I'm speaking about. So let me take this moment to break it down.  

Is an altered state of mind going to address or correct all my problems?  No.

Am I suggesting the idea that "positivity" cures?  Also no.  

I am reminded of a medical professional who endured a traumatic spinal injury and was told they'd never walk again. This began a four month long meditative process for this individual, who envisioned having surgery to the point of feeling its physical effects. Needless to say, they are not only walking again, but still practicing medicine.

Of course, there are things that cannot be "fixed." But shifting gears in how we think about a problem cultivates space for an opportunity to no longer dwell on what we're unable to change. Instead, we can invest and focus on what we can change.  

Dwelling isn't the same as grieving, so give yourself permission for having thoughts of "screw this!"  

Exploring new territory is what it means to be human. When we decide our experiences are opportunities for evolution, there's always a chance of merging onto an “on-ramp” that leads to personal growth and acceptance. 

That's another benefit of meditation that I encourage you to study for yourselves. When our bodily systems are more relaxed and we're breathing adequately, there's often improvement in how we’re feeling. Each moment consists of evolution because things are always changing, 

It took a while, but I've come to embody that same sort of energy. There's a lot throughout the world I can’t do very much about. But there are small things I can handle with great love, which includes coexisting with the different aspects of my life. Compassionate nurturing is a monumental and radical task, but it's vital and necessary.  

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.

The Devil Effect on Patients with Pain

By Dr. Lynn Webster, PNN Columnist

Society's response to pain management has shifted over the years. While pain treatment today often generates controversy, in the past it was viewed differently.

During the U.S. Civil War, a wounded soldier who was in agony was often given enough chloroform “to render him insensible to pain." Afterwards, soldiers may not have recalled the pain they felt, even if they remembered having surgery. We were concerned enough for our soldiers to ease their suffering with the most effective medication that was available.

At other periods in our history, society worried more about the risks of treating pain than the debilitating and sometimes lethal effects of the pain itself. At times, we even questioned whether pain was real and whether people were just inventing symptoms to receive attention or drugs.

People with pain have often been stigmatized. They have been expected to just tough it out, and those who couldn't were accused of being weak.

The Pendulum Swings Toward Empathy

In the 1990s, most people dying of cancer experienced excruciating pain, despite the fact that doctors had the means to help them. Opioids could ease their suffering. And a consensus began to grow in the medical profession that prescribing opioids for cancer-related pain was the right thing to do. Soon after, doctors began prescribing opioids for non-cancer pain, such as arthritis. The number of prescriptions increased.

Treating pain with opioids became acceptable -- even expected -- when the alternative was to let people suffer. It seemed reasonable at the time. There was little evidence then that opioids would cause serious harm if people used the pain medication as directed.

We always acknowledged that a subset of the patient population was at risk for abuse or addiction. Pain doctors like me did the best we could for patients with the research that was available to us at the time. Perhaps, in some cases, we would do things differently now.

Casting Blame for the Opioid Crisis

Ultimately, “overprescribing” was recognized as one of the contributors to America’s drug crisis. Looking back, it is easy to cast blame. We now have better information about the risks of using opioids. But there were few effective tools at the time to control pain, so prescribing opioids seemed like a valid alternative to letting patients suffer unnecessarily.

As more opioids were prescribed, there was a corresponding increase in all drug overdoses. That set off alarms, even though the causes of overdoses are myriad and complicated, and there is no simple correlation between rising opioid prescriptions and increased overdose deaths.

Societal attitudes began to shift again in the first decade of the 21st century. Families who lost loved ones to overdoses were looking for someone to blame. There were public and private demands to hold someone accountable for their deaths. The initial target was the pharmaceutical industry.

This wasn't anything new. The American public has more hostility toward Big Pharma than any other industry. A 2019 Gallop poll found that the public felt more distrust of Big Pharma than they did of the federal government!

The news media covered the tragedies of teenagers and young adults who were dying from overdoses. Often, those deaths involved opioids. The media also covered stories of families torn apart by addiction. Then the media's narrative shifted to allegations of deceit, greed and cover-ups by the pharmaceutical industry.

At first, they focused on Purdue Pharma. The company was making billions of dollars from OxyContin, and they were accused of irresponsibly promoting its use. The federal government filed a lawsuit against Purdue Pharma and this week announced a $8.3 billion settlement with the company.  

I recall the initial complaints about OxyContin were unrelated to the increased number of opioid related overdoses. Instead, Workers Compensation groups were complaining about the skyrocketing cost of the drug. In the late 1990’s, I recall hearing the medical director of Utah’s workers’ compensation program speak to the local pain society. He angrily insisted that the cost of OxyContin was exploding and must be stopped.

A new "Opium War" had begun. But this time, it was not between the Chinese and British. Instead, it involved health insurers and opioid manufacturers.

Chasing a Pot of Gold

The need to blame someone for the overdoses and make them pay for the harm opioids caused accelerated. Opioid manufacturers and physicians were in the cross-hairs of policymakers and law enforcement agencies.

Opioid distributors and patient advocacy groups were also accused of contributing to the drug crisis. It was alleged that distributors knowingly and irresponsibly supplied communities with large amounts of pills that far exceeded the amount needed for medical purposes. Advocacy groups were accused of being front organizations for opioid manufacturers. Whether or not distributors were irresponsible depends on one’s perspective, but the accusation about patient organizations was often baseless and malicious.

Of course, the bandwagon of accusers grew as the potential pot of gold increased. Lawsuits filed by states, cities and counties could result in a golden egg if they could convince a sympathetic jury or judge that they had been wronged. The sympathies of the public turned more and more against the drugs used in pain treatment.

The Devil Effect Harms Us All

Greed and the harm it causes is a well-known story. However, what is not as well appreciated is how it leads to a cognitive bias called the "devil effect" -- in which one bad quality creates the impression that there must be only negative qualities associated with a person or entity.

The belief that Big Pharma is inherently bad makes it difficult to appreciate the good things (such as vaccines and cures) that come from the industry, and to separate it from the bad things. Today, when doctors consult with or accept any funding from the industry, particularly the companies that make opioids, it is often referred to as “being in bed with the devil.”

Society’s belief that Big Pharma is inherently evil helps explain why people in pain are struggling. The truth is, Big Pharma is not intrinsically bad -- although there are some bad actors in the industry -- and drugs used to manage pain are essential partners in healing when used appropriately.

Our tendency toward black or white blanket perceptions -- and our choice to not learn about the complexities that would allow for a more balanced approach in our reasoning -- has consequences for every aspect of society. When it comes to pain management, the devil effect has yielded the terrible unintended cost of suffering by innocent people.

The pendulum eventually may swing back toward empathy for people who are suffering, but not until more people recognize the influence the devil effect has on society's attitudes towards Big Pharma, opioids and people in pain.

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. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find Lynn on Twitter: @LynnRWebsterMD. 

Great Progress Being Made in Treating Arachnoiditis

By Dr. Forest Tennant, PNN Columnist

About 5 years ago, most medical practitioners had either never heard of Adhesive Arachnoiditis (AA) or thought it was a spider bite. Today, almost all practitioners in the modern world have heard of AA. Many now understand it and some even treat it. A few are trying some innovative new approaches.

AA is a chronic inflammation that starts inside the spinal canal that can lead to severe suffering, neurologic impairments and a shortened lifespan. Once inflammation starts, it apparently never, or rarely, goes totally away.  

Treatment and prevention in recent years have greatly reduced the occurrence of some serious neurologic impairments and autoimmune complications of AA. The most obvious decrease in new cases reviewed by the Tennant Foundation are those of upper and lower extremity paraparesis (partial paralysis) and total paralysis, which are rapidly disappearing.

Urinary and bladder impairments that require catheterization are also hardly seen. And the autoimmune manifestations of arthritis, thyroid deficiency and carpal tunnel are disappearing.

Why the improvement? Awareness, thanks to patients, social media and advocates who have educated the medical profession about AA. Fewer epidurals, early treatment and emergency measures have all helped. The development of protocols for prevention, emergency intervention and on-going treatment have been essential.

Major Remaining Problems

Persons with AA are still having difficulty, in some communities, finding medical practitioners who are comfortable and willing to treat AA. The major complication is the development of constant pain and the intractable pain syndrome.

The key to preventing AA and stopping its progression is early treatment. Our research has clearly shown that AA is almost always preceded by one of 3 intraspinal canal inflammatory conditions:

1. Protruding, degenerated intravertebral discs.

2. Cauda equina inflammation.

3. Arachnoid inflammation (i.e. plain arachnoiditis) due to collagen disorders or needle injury.

Some intraspinal canal inflammatory disorders always precede AA. These disorders should be aggressively treated to prevent AA.

Select Corticosteroids Essential for AA

We believe all persons with typical AA symptoms and documentation of the disease on an MRI must take one of two corticosteroids (CS): methylprednisolone or dexamethasone for the spinal canal inflammation and pain of AA.

Currently there is no other medication agent that consistently and predictably suppresses intraspinal canal inflammation and reduces pain. Do not expect to halt progression or have much recovery if you do not consistently take a CS.

Dexamethasone and methylprednisolone are the preferred CS’s because they cross the blood brain barrier, enter spinal fluid and act on glial cells. Prednisone and hydrocortisone are not as consistently effective as dexamethasone and methylprednisolone, which should be taken in low doses.

1. Maintenance-low dose of dexamethasone (.5 to .75mg) or methylprednisolone (Medrol) 2 to 4 mg on 2 to 5 days a week. Skip days between dosages. An alternative is a weekly or bi-monthly injection of methylprednisolone or dexamethasone. Injections are usually the answer to corticoid sensitivity or gastric upset.

2. For flares, a 6-Day Medrol Dose Pak or an injection of methylprednisolone or dexamethasone, preferably mixed with a standard dose of injectable ketorolac.

The fear of corticosteroids comes from daily use of high doses, not from low, intermittent dosages. Some persons with severe asthma and rheumatoid arthritis must take a corticosteroid for years and don’t experience serious side effects.

Forest Tennant, MD, MPH, DrPH, is retired from clinical practice but continues his groundbreaking research on the treatment of intractable pain and arachnoiditis. This column is adapted from bulletins recently issued by the Arachnoiditis Research and Education Project of the Tennant Foundation. Readers interested in subscribing to Dr. Tennant’s bulletins should send an email to tennantfoundation92@gmail.com.

Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

Can Herd Immunity End the Pandemic?

By Roger Chriss, PNN Columnist

The latest round in the ongoing public health debate over the pandemic pits two online petitions against each other: the "Great Barrington Declaration" versus the “John Snow Memorandum.” The former focuses on natural herd immunity, while the latter emphasizes controlling community spread through lockdowns, masks and other public health measures.

The Barrington Declaration has garnered support from the Trump administration because it calls for schools and businesses to reopen, and for life to return to normal for “those who are not vulnerable” to the virus.

“The most compassionate approach that balances the risks and benefits of reaching herd immunity, is to allow those who are at minimal risk of death to live their lives normally to build up immunity to the virus through natural infection, while better protecting those who are at highest risk. We call this Focused Protection,” the Declaration states.

The John Snow Memorandum, named for the famed British physician who halted the 1854 London cholera outbreak, states that "Any pandemic management strategy relying upon immunity from natural infections for COVID-19 is flawed. Uncontrolled transmission in younger people risks significant morbidity and mortality across the whole population."

The Declaration’s Fundamental Flaws

The Declaration claims that “all populations will eventually reach herd immunity – i.e. the point at which the rate of new infections is stable – and that this can be assisted by (but is not dependent upon) a vaccine.”

But we do not know this. Many diseases, from malaria to Ebola, continue to rip through populations without reaching herd immunity. It is entirely possible that Covid-19 will reach a similarly perilous “equilibrium,” becoming endemic until the arrival of a vaccine. At this point we don’t know enough about the coronavirus SARS-CoV-2 to make any strong claims that herd immunity will “eventually” happen.

Moreover, the “Focused Protection” championed in the declaration assumes that we have adequate testing, contact tracing and isolating to protect the vulnerable, though at present the U.S. does not. It further assumes that Covid-19 doesn’t have a significant disease burden, even though there is mounting evidence that the disease can cause considerable and long-lasting harm in otherwise healthy adults and children.

The Declaration assumes that durable immunity to the virus results from infection. But there are a handful of documented cases where reinfection has occurred, such as a 25-year old Nevada man who became seriously ill during his second bout with Covid-19.  It’s not clear how “durable” immunity is.

As Yale immunologist Akiko Iwasaki explains in a recent commentary in The Lancet, “reinfection cases tell us that we cannot rely on immunity acquired by natural infection to confer herd immunity; not only is this strategy lethal for many but also it is not effective."

The experiences of Arizona, Florida and Texas over the summer show that “Focused Protection” doesn’t work in the real world. All three states were hit hard during the summer surge, with hundreds of thousands of cases and tens of thousands of deaths. As we head into the fall, we’re now seeing a surge of new cases in the upper Midwest.

The Memorandum’s Practical Challenge

The John Snow Memorandum states that “controlling community spread of COVID-19 is the best way to protect our societies and economies until safe and effective vaccines and therapeutics arrive within the coming months.”

This is credible, given the experiences of Germany, New Zealand, South Korea and other nations that managed to control virus spread and minimize death and disease through a mixture of public health measures. They created national plans for testing, tracing and isolating, and with consistent public health messaging that minimized socioeconomic disruption. Lockdowns were not always necessary, either. Japan avoided a national lockdown, instead controlling spread with strong public health measures.

The United States, by contrast, has failed to do these things. We are not generally good at public health, as the worsening opioid overdose crisis has clearly shown. The failures in the overdose crisis were arguably prologue for the uncoordinated and undisciplined approach the U.S. has taken to the pandemic.

The Memorandum’s recommendations are laudable, but they will be hard to implement, even though current projections suggest over 170,000 more deaths and millions of new cases of Covid-19 in the coming months.

The U.S. needs to ask itself two questions. First, how did we get to a point where the Great Barrington Declaration even sounds like a good idea? Second, what can we do to find a better way forward, as suggested by the John Snow Memorandum, to avoid additional deaths and disease? Winter is coming and the coronavirus will have the run of the country unless we step up to stop it.

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. 

Are You Living in the Matrix?

By Dr. Lynn Webster, PNN Columnist

A recent Netflix documentary, "The Social Dilemma," illustrates how social media networks are selling each of us as commodities to advertisers. Tristan Harris, a former Google employee, points out that platforms such as Reddit, Facebook, Twitter and Instagram make money by allowing advertisers to target members who are interested in their products or services.

That means anyone who uses "free" social media are not just consumers. We are the products being sold.

We’re allowing our brains to be manipulated by sophisticated marketing and artificial intelligence (AI) designed to change our behavior. Each time we “like” something or stay on a web page for more than a second, we provide technology companies with additional knowledge about who we are and what makes us tick. Each click helps AI become better at manipulating us, deciding what we see and what we don’t.

Because the things that fill one person's newsfeed may never make their way into another’s, social media networks shape our version of reality while they polarize society. Unfortunately, “fake news” is sometimes more profitable to advertisers than real news. We have segued from living in the Information Age to subsisting in the Disinformation Age. This is especially frightening when we see how much influence conspiracy theories have in our culture today.  

According to the documentary, we have essentially isolated ourselves in a bubble of technology. Loneliness and depression are rampant in our society, and people interact less in the real world than they do online. When others "like" our posts, we get a hormonal rush of chemicals -- and when it dissipates, we crave another hit. The need for approval and belonging keeps us clicking.

As "The Social Dilemma" asks, "How do you wake up from the matrix when you don't know you are in the matrix?"

People with Pain Live in the Matrix, Too

The online audience for messages has become fragmented for people with different views. This limits the reach of any particular message to those who share the same beliefs or problems. That puts people living with pain who reach out to others through social media at a disadvantage they may not even understand.

The documentary makes the point that the only industry besides social media that uses the term “users” is the illicit drug world. People living with pain or addiction are vulnerable to the same dopamine rush that keeps us clicking to receive affirmation from others who share our experiences.

People in pain desperately want to be heard by people who can help them. But, because of AI, only those who already tend to be supportive of people in pain are likely to see their posts.

The very nature of chronic pain and addiction narrows people’s worlds. So does social media. It has a compounding effect. As a society, we need to understand that our world becomes narrower with each click.

Think of those you unfriend or the people who block you on social media. They are the ones you need to hear from, because they are people who have different views from yours. It may feel comfortable to stay within your own lane, but that won't help if your goal is to understood the world and help change it for the better.   

Bursting Your Information Bubble

There are general principles we can all use to sort the truth from the lies on the internet. One is to recognize that if you have a strong emotional response to an online message, you may have become the successful target of manipulation. Take a deep breath and tell yourself the manipulators found a way to trigger your dopamine release. Remember that the message you saw may be only partially true -- or not true at all.

Before you share a post or believe it yourself, verify the source. Check out the veracity of the story on Snopes or some other fact checker. Seek out sources other than those that appear in your timeline or on your news feed. Instead of trusting your search engine, proactively log onto news sites with opposing viewpoints.

If the stories you find feature quotes, go to the original source and see if the message was taken out of context. The greater your emotional reaction to the message, the greater the chances are that it is inaccurate, misleading information.

“The Social Dilemma” website offers a toolkit to “realign your relationship with technology” and explore these issues -- including what social media is doing to our democracy -- more deeply.

We can't ban the internet. We wouldn't want to, even if we could. There are obvious benefits to digital communication, and we can't put the genie back into the bottle.

However, if we don’t want to be trapped in a dystopia where humanity is controlled by a manipulated reality, we have to realize that "free" online services are anything but that. The cost is the truth. When we sacrifice a balanced view of the world because of our desire to belong, we risk locking ourselves in the matrix. 

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. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find Lynn on Twitter: @LynnRWebsterMD. 

How to Rekindle Romance While Living with Chronic Illness

By Barby Ingle, PNN Columnist  

Living with chronic illness can put a strain on any relationship, particularly marriages. To help other couples, my husband Ken and I have I decided to share our learned wisdom on how to rekindle romance in a chronically ill partnership.   

My first suggestion is to keep track in your pain diary so that you can remember the details. Record at what point during sexual intimacy that pain occurred or increased, and what the circumstances were when your pain subsided. Putting your thoughts on paper can help you understand the underlying issues and complications, and regain control of your intimacy.

Although Ken and I did not use a therapist, there are techniques that a therapist will suggest that can help a chronically ill person normalize their symptoms, which boosts self-esteem and lowers feelings of isolation. Improved self-esteem can enhance virtually every aspect of your life, including strengthening your relationships.

A life change due to health problems can be a common trigger for lowering how you perceive yourself. The challenge is to identify that this is going on and create an intimate connection with your partner at the same time.  

Take a look at what you are doing. Are you alienating yourself or your partner? If so, why? Think about your behaviors and beliefs. Are they holding you back from intimacy?

Consciously thinking positive thoughts can boost self-esteem, but it takes practice. How you approach it can make all of the difference. Start with simple words and reminders to yourself. Then reconnecting with your partner will become easier. 

Rekindling romance could be as simple as a few words, a gesture, or a look or touch that will let the other person know you are okay. Be conscious of this each day, so that not a day goes by without a kind word or gesture, even if you are not having sex daily. And really, who does that when they’re in constant pain?

Try this the next time you are washing your hands at the bathroom sink: Write “I love you” on the mirror with a soapy finger or lipstick. This can help create an intimate moment.  

Be the one to take control if your partner is afraid that they will hurt you further because of your current pain level. Be sure to reach out and let them know you would like to have a sexual experience. Say, “Do you want to have sex right now?” or whatever cute, sexy or clever way feels natural to you.  Lead the experience to relieve their worry.

Spouses often have different sexual desires. Turning your desire totally off just because of pain can cause harm to your relationship. Your partner probably married you expecting a healthy sexual relationship. Holding back on intimacy can lead to the end of a marriage or even infidelity.

The last thing a chronic pain patient needs is more discomfort. But when intimacy increases pain and leads to avoiding sex or even cuddling, the relationship suffers. Don’t let this be the beginning of a vicious cycle of no sex.  

What can you do to increase the connection, romance and sex that you have with your partner? When you are talking, try to share your struggles about staying close. You can also share positive thoughts, such as sex helping you cope with chronic pain. 

I hope that these tips can help you rekindle any lost sparks with your partner. All those things you don’t say could be keeping you and your partner on different pages. Turn on the power of romance and make your relationship stronger.

Believe me, I understand how difficult it can be to push yourself to be romantic when all you want to do is sleep or cry from the pain. Having a close relationship physically with your partner can make a huge difference in many areas of your life.

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. 

Pre-Existing Conditions Deserve Affordable Treatment

By Dr. Lynn Webster, PNN Columnist

The National Institutes of Health reports that about 10 percent of Americans experience a substance use disorder (SUD) at some point in their lives. Most of those who suffer from an SUD receive no treatment.

About twice as many Americans – 20 percent -- have chronic pain. Many of them also cannot find adequate treatment or even a provider willing to treat them. 

Making treatment accessible for both of these conditions -- which are defined as pre-existing for insurance purposes -- is always a topic of concern. These days, it is of paramount concern that access to treatment is available. And it requires us to take action.

We’re All at Risk for Pain and Drug Abuse

Poverty and hopelessness are risk factors for drug abuse, even though not everyone who is economically challenged develops an SUD. Unfortunately, prevention and treatment programs for SUDs are less available to those who cannot pay for them and who most need them.

Anyone can suffer from chronic pain, but even those with resources may not have access to adequate pain management.

My concern is more than theoretical. It is personal. I have friends, former patients and family members who suffer from SUDs. If the Affordable Care Act (ACA) — widely known as Obamacare — ends and we lose coverage of pre-existing conditions, I fear they will be abandoned in exactly the same way as people in pain have been abandoned ever since the CDC issued its 2016 opioid prescribing guideline.

In recent years, I have received hundreds of emails and calls from people in pain. Their medications have been tapered and they don't know where to turn for help. Untreated chronic pain, as well as untreated SUDs, can result in ruinous consequences: disability, destitution, isolation, poverty and suicide.

We need to help healthcare providers find more effective ways to treat their patients. The Centers of Excellence in Pain Education (CoEPEs) program was created to teach healthcare professionals about pain and its treatment. Since this is something most doctors do not study adequately during medical school, it's important to have continuing medical education opportunities to learn about the stigma associated with pain treatment and substance abuse disorders.

Abolishing ACA Could Have Devastating Consequences

The current administration has appealed to the Supreme Court to abolish the ACA. President Trump has said that Obamacare "must fall." Given the fact that we're in the middle of a pandemic and millions of people are unemployed and may have lost access to employer-sponsored healthcare, the timing seems terrible.  

But even without a pandemic, reversing the ACA would be devastating for millions of Americans who have an SUD or chronic pain. President Trump signed an executive order on September 24 that claims to protect people with pre-existing conditions. However, experts dispute whether his executive order can actually do what it promises.

Regardless, eliminating the ACA will likely allow insurance companies to charge higher rates for people with pre-existing conditions. This would essentially render treatment for chronic pain and SUD unaffordable for many people, leading to an increase of the terrible consequences mentioned above. And, of course, SUDs and chronic pain are only two of the pre-existing conditions that would no longer be protected. 

It is time for everyone to understand the consequences that losing the ACA may have for their community, family, friends and themselves. There is still time to be heard, but you have to act quickly. Click here to find your federal, state, and local elected officials and express your views.  

Let us also send healing thoughts and prayers to President Trump, the First Lady and everyone else infected with COVID-19.

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. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find Lynn on Twitter: @LynnRWebsterMD. 

A Different Perspective on Disbelief

By Carol Levy, PNN Columnist

I was watching a 2009 episode of Law and Order. The plot line revolved around a fetus who had Ehlers-Danlos syndrome (EDS). They talked about the trials the fetus would face if born, because he would have “fragile” skin that could tear at the slightest touch.

Never once was chronic pain, a major aspect of the disorder, even mentioned. I wondered why they ignored such an essential part of living with EDS. Could it be that the idea of chronic pain is foreign to most people, including scriptwriters? Not a novel thought by any means, but then I took the idea further.

Most of us know what a sprained ankle, aching tooth or thumb hit with a hammer feels like. It hurts like heck, but we know it will go away. We do as much as we can to make it stop as quickly as possible. Pain is something our bodies and minds abhor. And rightfully so.

For most people, acute pain is short lived. It does not disable us, at least not for more than a few hours or days. It is not debilitating. It does not take over our lives.

But for some of us, the pain lingers and becomes chronic. It changes our lives irretrievably. Our experience is antithetical to what most people know and how they experience pain. We still expect them to understand, but way too often they don't. And it is upsetting, even maddening, when they don’t.

But maybe it is not merely that they don’t “get it.” Our minds and bodies are created in such a way that we are meant to turn away from pain. Maybe that also means to turn away from the horrible idea that there can be pain that does not heal and does not go away.

It is easy to think – and hope -- that if I explain my chronic pain to those who deny it, who call me a hypochondriac or malingerer, that they will ultimately come around and understand.

Not understanding, or being unwilling to understand, always seemed to me as a failing in the other person; a lack of empathy or compassion. But maybe it is more than that. Maybe it is a biological and psychological imperative. To accept that pain can be chronic is anathema to the way our minds and bodies are programmed to respond to pain.

Not an excuse, but maybe a way to understand when someone says, “I don’t believe you.”

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.”



6 Reasons to Participate in Clinical Trials

By Dr. Lynn Webster, PNN Columnist

The COVID-19 pandemic has left many people feeling helpless -- yet you can help defeat the virus. You may not be a medical researcher, but you can still be part of developing a vaccine. There are three COVID-19 late-phase vaccine trials currently underway in the United States, and they will involve more than 100,000 individuals. 

All stages of research  require volunteer subjects. Early-phase trials require healthy volunteers, who may not directly benefit from a vaccine or medication but participate for other reasons. The current COVID-19 vaccine trials, for example, involve people who do not have the infection. Some will receive the new vaccine and others will get a placebo.

Only after volunteers are exposed to the virus can scientists determine if the vaccine is safe and effective when compared to a placebo. If a participant becomes ill because of exposure during the trial, the sponsor of the study generally pays for their medical expenses.

Not all clinical trials involve a placebo, but most do. Later-phase trials may offer benefits to the volunteers who have the disease or condition that the drug targets.

There are various ways to get involved in a trial. You may be invited to join one of these trials. Your physician may be part of network of providers participating in a study. If so, they can offer you an opportunity for enrollment. Or, if you are looking for a specific treatment, you can go online to find a study that may be of interest to you.

Here are six reasons to consider participating in a clinical trial:

1) Clinical trials provide safer and more effective therapies

Without clinical trials, development of new and more effective treatments would not be possible. Medical advances depend upon people who are willing to participate in trials. Every drug, from vaccines to pain treatments, approved by the FDA has been studied in clinical trials.

2) Clinical trials provide you with free access to a new treatment

When I started to treat people in pain, I conducted clinical trials to provide my patients with cutting-edge technology that was not yet publicly available. I wanted my patients to have access to the best and newest therapies in the pipeline.

Of course, there was no guarantee that the experimental therapies would be effective. However, the treatments were free to participants in the trial. If the risks were perceived as acceptable, it could be worth it for patients to take the chance.

3) Clinical trials can save your life

Late-phase clinical trials, such as the three currently underway for COVID-19, may provide immunization that could save the life of the participant. Through other clinical trials, we have provided lifesaving therapies to subjects who otherwise could not have obtained them because they couldn’t afford the treatments, or the treatments simply were not available to consumers.

4) Clinical trials can save a loved one’s life

Clinical trials provide researchers with more knowledge and potential therapeutic options. Participating in vaccine trials can lead to the approval of a treatment. This could save the life of a family member who may one day need a vaccination or drug treatment.

5) Clinical trials are regulated by FDA

Clinical trials are highly regulated and generally regarded as safe. Most clinical trials sponsored by industry are required to have their protocols reviewed and accepted by the U.S. Food and Drug Administration, which assesses the safety of every trial. The agency will not allow a company to begin a trial that has not been fully vetted by several FDA departments.

In addition, all protocols must be submitted to an institutional review board (IRB) for approval. This is an independent body charged by the FDA to evaluate and monitor trials. The IRBs and principal investigators contract with the FDA to follow guidance from the Federal Office for Human Research Protections. Both IRBs and principal investigators can be criminally charged if they fail to adequately monitor and accurately report results of a trial.

When the FDA grants permission to fast-track a particular therapy because of an emergency situation, protocols may be loosened. The potential benefits, in that case, have been determined to outweigh the risks. We have to hope that the accelerated approval process for a COVID-19 vaccine will not cause adverse events.

Prior to enrolling in a trial, participants are provided with an informed consent form that describes the trial in layman's terms and explicitly states all of the potential risks. Participation in clinical trials is always voluntary, and a person can withdraw from a trial at any time.

6) Clinical trials may compensate participants

Some trials compensate participants for their time and travel. This occurs more often in early-phase trials for which there is no clear clinical benefit to the individuals. Most trials requiring participants to stay overnight in a research facility compensate volunteers. Participants' compensation depends on the amount of time the testing takes and the types of tests that are performed.

Compensation must be reasonable, yet not excessive. Compensation ranges from $50 or less for a simple saliva sample to $10,000 or more for studies that require staying in a facility for 30 days or so. 

You can learn more about clinical trials at the National Institutes of Health website or by visiting the Clinical Trials website. The National Institute of Allergy and Infectious Diseases also has a website to connect volunteers to coronavirus vaccine trials. And COVID Dash has a portal where people can volunteer for dozens of coronavirus studies around the world.

One clinical trial may create the breakthrough that helps us get the pandemic under control. But that can only happen if enough people from a variety of demographics are willing to volunteer to be a part of the effort.

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. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find Lynn on Twitter: @LynnRWebsterMD. 

My Undiagnosed ‘Growing Pains’ Nearly Killed Me

By Mikki Ingram, Guest Columnist

When I was a little girl growing up in Oklahoma, I was a tomboy. I played outside constantly no matter the season and was excited to be so close to nature. I did this in spite of frequent sprains, joint dislocations and abnormally bad “growing pains” starting at age three.

To me, those things were normal. I never thought to ask anyone about their own experiences, because my parents never made any fuss. Why should I?

As I grew up, the growing pains never stopped. I remember multiple times, as I was in the throes of puberty and even after, waking up in the middle of the night, crying and rubbing my joints. I had menstrual cramps so bad that I had to miss school. No Tylenol or ibuprofen combination would touch those pains. My dad thought I was being overly sensitive.

MIKKI INGRAM

After my daughter was born in 2003, I became extremely ill. The growing pains that I had come to regard as normal were more extreme than ever. Fatigue also swept over me. I missed the first 6 months of my daughter’s life because I was asleep for most of it.

The pain was consistent, the fatigue more so, and every doctor I went to said the same thing: “You look fine. You’re too young for this.”

I was diagnosed that year with fibromyalgia by a rheumatologist who called it a “diagnosis of convenience.” I was also advised to lose weight, eat better food and that the pain was all in my head. My primary care provider even said I should put my child up for adoption.

After months of plying me with random medications, none of which worked for this pain, I went to a hospital emergency room. The nurse that I saw is a woman I’ll never forget.

She ran an ultrasound on my gallbladder and came back saying, “You have gallstones. There are four of them and one of them is almost one and a half inches wide. You need your gallbladder out. Take these slides to your doctor and get a surgery scheduled.”

I was grateful beyond measure to her. My doctor, however, wasn’t. He didn’t see the need for urgency, so he scheduled my surgery for several months later. Meanwhile, the pain refused to stop. My fat-free diet did nothing and I was in trouble. In the ER of that same hospital, they told me that if I didn’t have the gall bladder out within two days, I’d be dead.

I filed a complaint about the doctor later. Nothing was done and he continued to practice until retirement.

That same provider sent me to a spine doctor. They were trying to figure out if the pain was coming from my back. The doctor said I needed to exercise more and do yoga, and insisted I get corticosteroid injections into my spine. I dutifully obliged the doc, getting multiple injections with no positive result. They only made the pain worse, so much so that we had to beg the doctor to stop scheduling me for them.

In 2018, at the age of 35, I was finally diagnosed with hypermobile-type Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that explained my lifetime of sprains, dislocations and growing pains. I also found out that those “miracle” epidural and corticosteroid injections had further damaged my connective tissues.

That damage occurred when, prior to my EDS diagnosis, I had been given both ciprofloxacin and levaquin antibiotics to treat my chronic sinus infections. Both of those medications weakened my body’s tendons and, four years later, still give me pain. The warning labels on those antibiotics specifically say they are not for people with connective tissue disorders like EDS.

People have looked at me throughout my life and accused me of everything from faking, to lying,to being a hypochondriac. I’ve been told that it’s my weight, accused of taking methamphetamine (due to my near-scurvy levels of vitamin D and having to have all of my teeth removed) and much more, all while being told, in spite of the evidence on my chart, that I am “fine” because I somehow look fine.

When I look at me, I don’t see “fine.” I see a woman who barely sleeps because of excess adrenaline due to EDS. I see a woman who has nearly died due to medical negligence. I see a woman who has permanent nerve damage due to that same negligence. I see a woman who was used by many providers as a guinea pig for their pet projects to prove that I really was “fine.”

I see a woman who now suffers from severe post-traumatic stress syndrome, as well as Impostor syndrome, due to all the times she was called a liar in spite of mountains of evidence to the contrary. I see a woman who survived in spite of it all.

Most of all, I see a woman who fights to be treated like a person with a chronic condition, multiple comorbidities and intractable pain, instead of a person who is actually “fine.” But, maybe that’s just me. 

Mikki Ingram lives in New Mexico. Mikki is a proud supporter of the Ehlers- Danlos Society.

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

My Pain Doctor Abandoned Me, But I'm Not Going Away Quietly

By CindyLee Calaluca, Guest Columnist

Recently I was terminated by my pain management physician without notice and with no plan for continued care. Why? I complained to the physician that I did not appreciate getting no call back when I repeatedly contacted his practice — over an 8-day period — to report that my chronic pain now had a severe acute component to it.

The acute problem is caused by a severe deep vein thrombosis, extending from the groin to the toes in my left leg – the result of a surgical wound from a toe amputation tearing open from severe swelling. Additionally, an old pressure ulcer had abscessed. The acute pain I am experiencing is because of an overlap with my poorly controlled chronic pain, thanks to the CDC guideline for prescribing opioid medication.

All I can do now, because of the pain, is lay in bed and force myself to sleep to cope with the pain. I am totally incapacitated and unable to do daily activities independently. I am 70 years old, a widow, and my only living relative is a 69-year-old brother who lives 2,000 miles from me.

The physician responded to me inappropriately. He told me he gets 3,000 phone calls a day and saw no reason to respond me, because there was nothing he was going to do about my pain. Furthermore, he had an arrogant demeanor and feels he isn't required to call me. I get an appointment once a month with him and that's where his responsibility for my care ends, he said.

Naturally, that opened the door wide open to abandonment and neglect of a patient. His practice has no after-hour or weekend coverage beyond an answering service.

Before he walked out on me, he insulted my career experience, called me uneducated, and said I didn't know what I was talking about regarding health care or laws.

It is a shame that in his superiority complex, he forgot, if he ever knew, my career or educational background. You see, I am an adult and geriatric nurse practitioner who holds a doctorate in nursing practice with 55 years of clinical experience, along with 20 years of simultaneous healthcare administration. That physician is about to find out how "uneducated, stupid and wrong" I actually am.

That's the story behind my being abandoned and put in my place for complaining. I tried to be nice and have an adult conversation with this man. What a shame his child showed up!

I completely understand the problems created when patients arbitrarily lose their providers without adequate and proper notice. I live in a community of less than 500 people. The nearest pain management practice that uses oral medication is 45 miles away. The next one is two and a half hours away. Then there's University of Alabama Medical Center, which is six hours away. Right, I'll just pop into the pain center tomorrow. Like that's happening.

I have had it with all the buck passing by politicians, law enforcement agents, and the CDC making doctors too afraid to practice pain management correctly. Putting a sign in the lobby stating that under no circumstance does the practice treat pain is not correct medical intervention. In fact, since pain is a symptom of illness and that the body is imperiled, it is turning a blind eye to abandonment.

I am no longer going to be a good patient and not respect myself. I refuse to play the game anymore. Since I am dying, I am not going quietly into the night. I am going to advocate and do so loudly, visibly and boldly. I will advocate for patients one last time.

CindyLee Calaluca lives in Alabama. Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

Ironic Partners: Suicide Prevention and Pain Awareness Month

By Dr. Lynn Webster, PNN Columnist

September is National Suicide Prevention Month. It is also Pain Awareness Month. It may appear coincidental or ironic that we recognize suicide and pain during the same month. However, there is an unfortunate association between the two: pain -- either emotional or physical -- too often leads to suicide. Conversely, awareness and treatment of either type of pain, can often prevent suicide.

According to the World Health Organization, 800,000 people worldwide take their own lives each year. The number of suicide attempts is many times greater. Suicide is a serious problem globally and it is often linked to mental health problems.

Many military veterans, like civilians, suffer from both physical and emotional pain. This can lead to substance abuse and increased suicide risk. Veterans frequently experience post-traumatic stress disorder (PTSD) as a result of their military service, but they often don’t get the help they need because the military's mental health system may not take their struggles seriously. The Pentagon has even refused to award Purple Hearts to veterans with PTSD because it is not considered a physical wound.

Transitioning to civilian life after leaving the military can be stressful due to disruptions in social support, financial strain and changes in access to health care. Between 6 and 12 months after they separate from the military, veterans are at the highest risk of suicide.

Suicides associated with serving in the military are at a crisis level -- perhaps because of a lack of pain awareness and cuts in funding to suicide prevention programs. The Department of Veterans Affairs estimates 17 veterans commit suicide every day. Veterans' suicides account for 18% of all suicides in the U.S., even though veterans only make up 8.5 percent of the adult population.

More People at Risk

It’s not just veterans at risk. Over 48,000 Americans took their own lives in 2018. The suicide rate in the U.S. has increased by about 1.8% annually since the year 2000 and is one of the highest among wealthy nations.

The coronavirus pandemic may be adding to the problem. According to the Centers for Disease Control and Prevention, adults have recently reported considerably increased adverse mental health conditions associated with COVID-19. The CDC says groups that are suffering the greatest numbers of COVID-19 cases, including minorities, essential workers and caregivers, have experienced “disproportionately worse mental health outcomes, increased substance use, and elevated suicidal ideation."

People with substance use disorders are also more likely to contract the coronavirus. Those who do become infected bear the double burden of COVID-19 and addiction.

All suicides are tragic, and the losses affect families and entire communities. But suicides can be prevented by understanding the warning signs. Aggression, mood changes, relationship problems, prolonged stress, another person's suicide, and access to firearms or lethal drugs are all risk factors. Intractable pain, too, is a red flag.

According to the American Foundation for Suicide Prevention, depression, substance use disorders, bipolar disorder, and schizophrenia all elevate the possibility of suicide.

Suicidality has become omnipresent in our society. We probably all know of someone who has committed suicide. Even worse, we may have lost a family member or loved one due to suicide. It affects people of all socio-economic levels.

The National Suicide Prevention Lifeline (1-800-273-8255) provides a hotline for anyone who is having a mental health crisis or suicidal thoughts. Free, confidential help for a loved one, or for you, is only a phone call — or online chat — away. 

We may not always know who is struggling with emotional pain, but it is generally apparent when someone experiences insufferable physical pain. The partnership between suicide ideation and severe untreated pain can be mitigated if society will see people in pain as deserving of treatment. 

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. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find him on Twitter: @LynnRWebsterMD.

LSD Won’t Make a Good Painkiller

By Roger Chriss, PNN Columnist

Recent news that a small pilot study found LSD has a “protracted analgesic effect” at low doses garnered a lot of enthusiasm and hype. Headlines declared that LSD “could replace opiates” and be a “potent weapon against pain.”

The study looked at two dozen healthy volunteers given low doses of LSD or a placebo and then subjected them to a “cold pressor test” – immersing a hand in near-freezing water. Researchers found that 20 micrograms of LSD “significantly increased the time that participants were able to tolerate exposure to cold (3°C) water.”

Despite this, LSD has a clear problem: Its therapeutic index is very low.

The therapeutic index is a measure of the relative safety of a drug, computed by dividing the toxic dose by the dose needed for a therapeutic response. A toxic dose represents a threshold beyond which undesirable side effects or adverse events become common.

A high therapeutic index is better. It signifies a broader range of possible doses, letting clinicians adjust a dose precisely for a specific patient. Body weight, age, gender and metabolic status all influence drug metabolism and a high therapeutic index improves clinical safety.

A high therapeutic index also means that the drug can be given in multiple doses. If an initial dose is inadequate, a second dose can be given. Or a dose of another medication from the same class can be given. Or the drug can be given repeatedly over a short time without risky cumulative effects. All of this is important, because acute pain associated with trauma, injury or surgery may last for days.

The therapeutic dose of LSD in the simulated pain study was 20 micrograms (lower doses were ineffective). In general, a hallucinogenic dose starts at 25 micrograms. This suggests that LSD’s therapeutic index is 1.25.

Other measures of drug safety look even worse. The measure known as the margin of safety looks at how a dose may be toxic for 1% of people while being clinically effective for the other 99 percent. This accounts for variations in dose-response curves. Since some people experience LSD’s psychoactive effects at well below the standard 25 microgram threshold, LSD’s margin of safety is also very low.

LSD probably has little future as an over-the-counter analgesic or in a standard clinical setting for acute or chronic pain. It may instead have potential as a narrow therapeutic index (NTI) drug, which the FDA defines as a drug “where small differences in dose or blood concentration may lead to serious therapeutic failures and/or adverse drug reactions that are life-threatening or result in persistent or significant disability or incapacity.”

Current NTI drugs include lithium and methotrexate, which are used to treat serious conditions such as bipolar disorder and rheumatoid arthritis in carefully selected patients under close medical supervision. LSD could wind up being designated as an NTI drug, but only if clinical trials demonstrate safety and efficacy in the management of specific types of pain.

In general, however, LSD is unlikely to be a broadly useful analgesic. Pain relievers need to have a wide therapeutic index in order to succeed, and there seems to be no practical way to do this with LSD.

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

The Other Side of Chronic Pain

By Donna Corley, Guest Columnist

As I contemplated how to begin this article on a subject that has troubled me for some time, I continue to hear Paul Harvey’s famous tag line, “And now you know the rest of the story.”

I’ve noticed for a while that when we share our stories about life with chronic pain, we often focus on the physical struggles and lack of proper treatment, but leave out the emotional side. We rarely tell anyone how vulnerable and afraid we feel, especially our families and doctors, for fear of them thinking we are faking it or even a little crazy.

I’ve hidden that side of myself very well -- as have many of you -- and for good reason. But in doing so, I’ve only told half of my story and only shared half of who I am.

It is very hard to show vulnerability to anyone because we are judged by so many people. No one wants to be ridiculed for how they feel.

We should not be made to feel this way. None of us asked for pain conditions and diseases. Yet, we are shunned and doubted, and made to feel like we should not talk about the emotional side of our journey or the fear of “what comes next.”

That is the secret we hide from the world.

DONNA CORLEY

My story is a little unique in the sense of how long it has been. My journey started my senior year of high school, when I broke my back in a bad car accident. I was unaware that one accident could manifest into conditions called Adhesive Arachnoiditis (AA) and Tarlov Cyst disease. It took 23 years before I was properly diagnosed with AA. I still have moments when I think, “If only I was diagnosed sooner.”

I think there’s a big misconception about patients who suffer with chronic pain conditions, especially those with no cure. The public doesn’t realize that there is more to us than our pain. But if we don’t talk about our emotional torment, how could they know?

Living in Fear

Being a mother brings worry naturally. When you add massive pain with weird symptoms that make you feel like an alien has taken over your body, well that’s fear. Full-fledged, terrifying “I’m dying” fear. Fear brings anxiety, which brings doubt, and this can bring on depression. And it all started with pain no doctor could explain or diagnose, let alone treat!

The medical community is still being taught that Tarlov Cyst isn’t worth looking for in an MRI because they believe the disease doesn’t cause pain or other symptoms. That’s not true in my case at all. I went years before Tarlov Cyst was diagnosed and only because part of my pain couldn’t be explained. Even then the physicians refused to admit the Tarlov Cyst was causing any symptoms.

I can remember when my children were little having anxiety so severe that I would hyperventilate. Fear gripped me worse than the pain. Fear of dying and leaving my children. Fear that I had something terminal. No doctor wanted to dig deeper to find out what was wrong with me. My pain would be so severe at times it felt as if someone was ripping my spinal cord out, yet I kept this to myself.

I never told anyone the extent of my pain for fear of people thinking I was exaggerating, or worse, that it was all in my head. I quit driving for several years because I was scared my pain would become so severe I wouldn’t be able to make it home.  

Looking back, I see how pain ruled my life to the extent that it brought on major anxiety. I missed out on so many things with my children, their school functions, church, ball games, etc., all because of pain, fear and anxiety.

You learn how to hide your pain. Even if it means sneaking off to the bathroom to cry for a few minutes because you are hurting so much. You become a pro at clenching your jaw and smiling through the pain. Constant pain keeps us in a “fight or flight” state that can be very hard to manage alone.

I’ve seen doctor after doctor more times than I can count. They would all ask me, “Why are you here?” I finally stopped going. I stopped asking my primary care physician to refer me. What was the point? Physicians used to look outside the box to find answers, but it seems that “patient centered care” is gone. I had a doctor tell me a couple years ago that he couldn’t help me because I had too many health problems!

Doctors can’t always fix us, but their words and actions have lasting consequences, and some are just resoundingly bad.  Many patients have developed severe emotional trauma from being bullied by physicians who talk down to them like they were stupid and insignificant.

There is another important subject that everyone shies away from, even in patient support groups, and that’s sex. I can understand it being a sensitive subject, but it affects more patients than people realize. Whether it’s erectile dysfunction, the inability to have sex because of pain, or the inability to have an orgasm, these conditions can tear marriages and relationships apart. But the subject is not often discussed with physicians or even family members.

I had to give up a job and career I loved due to chronic pain and had to find a new purpose. That was a very hard part of my life. First, it was hard accepting that I could no longer work, and then it was hard accepting that I would be in pain for the rest of my life.

I thought it was a death sentence when I was first diagnosed with AA. Then I realized, “Hey, I’ve had it for 23 years and I’m not dead yet.” Being a quitter isn’t in my DNA, and I love my family too much to quit. I did a lot of praying, asking God, “Why me?” It was like he said to me, “I need you here.”

That’s truly when I began to have a passion, a drive to fight for awareness, to help other patients get a timely diagnosis and find new doctors.  Praise God, we have quite a few great ones, but we need more.

No one should be made to feel like they are crazy, ignorant, insignificant or lying because they are in pain. I’m still here trying to love the life God has blessed me with. Yes, I see my life as a blessing. If I had not been diagnosed with these diseases, I wouldn’t know how to empathize with others in pain.

We as patients should be able to discuss our fears and concerns with our physicians and families without fear of negative consequences. It is past time people quit condemning those of us who suffer in pain because of the way we feel.

Donna Corley is the director of the Arachnoiditis Society for Awareness and Prevention (ASAP) and creator of the Tarlov Cyst Society of America. She lives in Mississippi with her family.

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

The Social Consequences of Chronic Pain

By Ann Marie Gaudon, PNN Columnist

When someone suffers acute pain from an accident or injury, a positive consequence is that it evokes care and compassion from others. However, when that pain becomes chronic, you don’t often receive flowers, cooked meals and offers of help. Your social connections may suffer, too.

That’s not a small issue for pain patients. A 2008 study found that maintaining social activities are just as important for people in pain as many of the physical and psychological consequences of chronic pain.

Let’s take a look at a short list of five ways that chronic pain challenges the maintenance of social relationships.

1) Reduced participation in social activities  

Chronic pain physically takes people away from their social networks. Pain flares can be a disincentive to planning and engaging, and can inhibit participation in activities. Fear of judgment can also lead to social withdrawal. And a lack of invitations to social gatherings may mean others are judging or making assumptions about your capabilities.

2) Impaired interpersonal functioning

Chronic pain induces self-focused attention by latching your attention on an area that may be under threat. For example, persistent back pain may draw your attention away from others and put it on your lower back. 

When attention is taken away from others, it reduces your ability to show empathy, social interest and attentiveness. This in turn reduces pro-social behaviour and impinges on your ability to self-regulate and monitor your emotions -- skills we rely on to adapt our behaviour to different social situations and norms.

For example, we might want to laugh loudly while reading a funny book in the library, but we stop ourselves. Or we might be at a work event and notice there is no foul language, so we self-monitor and do not swear ourselves.

These types of social skills require attention.  When chronic pain is taking up attention, there will be less capacity for self-regulation and self-monitoring. The end result: pro-social behaviours suffer.

3) Chronic pain and negative mood

Although being in a bad mood is a normal but unwanted reaction to chronic pain, it is not considered socially appropriate. Pain sufferers often try to mask their mood to help others feel more comfortable.

Negative moods are contagious and can influence the mood of other people, resulting in less enjoyment for everyone. It can also induce more negative judgments and bias against others.

4) Loss of social roles and identity  

Social relationships are founded upon shared social identities and interdependent social roles. For example, as we grow and develop, we have childhood friends that we have much in common with and are close to. But as we become adults, we often go in different directions and no longer have so much in common.

Relationships erode or dissolve because of this. If a chronic pain patient can no longer work, enjoy activities or be on a team, this can erode self-identity and the commonalities that were once in place with friends.

5) Difficulty connecting with others  

Chronic pain can lead to a focus on the differences we have with others, rather than the similarities. This can fuel beliefs that you are less than, not reliable or even less competent due to your pain. As a result, you may withdraw from others rather than others removing themselves.

This is not an exhaustive list but it gives you an idea of the challenges faced in the social world by pain sufferers. It’s important for overall health to assess your social functioning as part of a biopsychosocial approach to pain management.

As a therapist, I need to understand a patient’s level of satisfaction with their social roles and identities, and the health of their interpersonal relationships with others in order to help them with strategies and coping skills to restore and maintain their social connections.

Interventions can be utilized such as group therapy, which is beneficial in the realization that you are not alone, and for strengthening relationships, reducing isolation, helping you to find your voice, and providing a safety net. Support groups offer many of these same benefits. You may learn helpful information and gain hope from the social support of others. Many support groups are free or charge a nominal fee.

Therapy can also provide social skills training. And couples training can help caregivers understand their loved one’s pain and acquire their own coping skills to avoid burnout and social isolation.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.