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.

Surviving COVID-19 Together

By Cynthia Toussaint, PNN Columnist

I’m a survivor. At least that’s what I’m called now that I’ve fought my way into cancer remission.

But why the new acknowledgement? As a person who’s endured childhood trauma and decades of high-impact pain with 15 comorbidities, including chronic fatigue, I earned the “survivor” label a lifetime ago. My world has been up-ended and negatively impacted in most every way since 1982.

It’s just that the aforementioned health crises were never taken as seriously. But because I’ve made it through the most aggressive form of breast cancer, I’m at last an honest-to-goodness, card-carrying survivor. Okay, I guess I’ll take it.

In any event, as a person who’s been seriously ill for nearly four decades, I’m accustomed to going from the frying pan into the fire. True to form, after enduring six months of grueling cancer treatment, I find myself coming out of a long, dark tunnel just to step into a bizarre new one. Enter COVID-19.

Yes, I’m alive, recovering well and wanting to move forward. Trouble is, there is no moving forward during this pandemic. 

More troubling, while able-bodied friends who can’t imagine life-long illness try to give comfort by reminding me that I just have to get into the new, temporary COVID rhythm, I suspect something more ominous will bring me my next survivorship card. And I’m concerned we’ll all own a piece of that plastic.

If you think about it, COVID-19 appears to be globally playing out just like a chronic illness. The virus started as something new and relatively small, a nasty bug that was different, but nothing to write home about. As it picked up steam, the threat settled in and the masses went into crisis mode. Now people are cut-off, lonely and depressed while longing for the life they had. Sound familiar?

Deep down, I’m sadly sensing there’s no going back. Like severe chronic illness, temporary isn’t an option once life has fundamentally changed on a profound level. Bad begets bad as things start going down the rabbit hole. And what of the pandemics to come?  I’m guessing the best we can hope for is acceptance and learning a new way of life. A new normal, if you will.

I don’t think healthy people have the ability or perspective to grasp this possibility. I don’t blame them, that’s understandably too bitter a pill. But that’s what we with high-impact pain do -- continue to adopt new normal after new normal due to loss, abandonment and disappointment. We carry on.

Still, right now, I deserve to be out-of-my-mind angry.

Being a cancer survivor means living with acute anxiety. If my cancer recurs, it will most likely be in the first year or two and much more aggressively. I want to live every moment I have to the fullest, but the world is shut down. I ponder whether my life partner John and I will ever again have an intimate dinner with friends, travel to an exotic destiny or go to a ballgame. I chose to fight cancer like a Tasmanian devil with the promise of life if I won mine. This feels like a massive bait and switch.

While I have the right to be hugely teed off, I’m trying like hell to make a different choice. I’m moving away from bitterness, as I learned long ago that sour grapes don’t get me squat. As my surrogate dad used to lovingly remind me, “It is what it is.”

Healthy Habits

So here’s what I’m doing to take my best shot at maintaining remission, keeping my pain in check and, yep, be a COVID survivor.

I’m using my quiet time to learn how to live the healthiest of lifestyle choices so my “terrain” will remain cancer hostile. Besides diet, exercise and finding purpose, this includes stress-management, the “Big Balance” that I’m finally learning  to master. In fact, I’m enjoying shedding my reputation as the woman who gets five things done before breakfast.

It starts with quality sleep, a HUGE challenge due to fibromyalgia and chronic fatigue syndrome. These days I’m in bed before 9pm. During this sacred, unwinding time, I don’t listen to COVID coverage or use my iPhone before falling asleep around 11pm. Instead, I meditate, tune into stimulating talk radio, and spend loving time with John and our two kitties. Happy to report I’m sleeping more restoratively than I have in two decades. And it feels like a miracle!

Another new healthy habit is checking in with my body several times a day. I lovingly ask what it needs, then nourish it. I’m deeply listening to its wisdom for the first time in my life. For example, I no longer count my swimming laps, but instead stop when it feels right. And I call it quits with my forever meaningful work before I skid into fatigue. If you know me, you know this is the new me. I’m even learning how to say “no.”  

I occasionally see a few close friends while social distancing, and John and I spend long, relaxing evenings at our neighborhood park. We eat plant-based whole foods (amping up our intake of fruits, veggies, nuts and berries), play backgammon, people/dog watch, and just sit and talk as the sun sets. I’m reconnecting with my love of film, books and music — and I’m considering getting an acting agent for disabled talent, as well as diving deep into French language and culture, a longtime passion of mine.

Perhaps most important, I live in Gratitude. I thank God for every day, for every miracle that knocks at my door. I’ve always been juiced by the big things; now the little things are just as gorgeous and life affirming. And I hold onto hope. You gotta have hope.

Hey, maybe the new normal to come will be glorious. It’s really up to us. We with high-impact pain have adaptive super powers that can lead the way for those newly initiated to serious life upset. We can be the example. Let’s stay calm, mask up, hand wash and do a dance (while six feet-apart).

I’m more than willing to add COVID survivor to my list of making-do-with-the-impossible. I gain strength and grace from knowing we’re in this together.

We got this.      

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.” 

Election May Determine Whether Marijuana Will Be Decriminalized

By Dr. Lynn Webster, PNN Columnist

“Times have changed. Marijuana should not be a crime,” Sen. Kamala Harris (D-CA) said last year when she and Rep. Jerry Nadler (D-NY) introduced the Marijuana Opportunity Reinvestment and Expungement Act (MORE Act). The current Democratic vice-presidential nominee called the legalization of marijuana an important step "toward racial and economic justice."

“We need to start regulating marijuana and expunge marijuana convictions from the records of millions of Americans so they can get on with their lives," said Harris.  

"Racially motivated enforcement of marijuana laws has disproportionally impacted communities of color. It’s past time to right this wrong nationwide and work to view marijuana use as an issue of personal choice and public health, not criminal behavior," added Nadler, who chairs the House Judiciary Committee.

Thirty-three states and the District of Columbia have legalized medical cannabis and several states allow its recreational use.  If it became law, the MORE Act would decriminalize marijuana at the federal level by removing it as a Schedule I controlled substance.

That wouldn't instantly remove all restrictions; states could still prohibit the sale of cannabis. But the MORE Act would give states more latitude to create laws to suit their needs, establish a trust fund to support programs for communities impacted by the war on drugs, and destroy or seal records of marijuana criminal convictions.

Game Changing Legislation

This week the House Judiciary Committee passed the MORE Act and later this month the full House is expected to approve the bill and send it to Senate. Chances are the bill will not pass the Senate, because Majority Leader Sen. Mitch McConnell (R-KY) opposes it -- while paradoxically supporting hemp farming.

However, if the MORE Act passes, it would be a game changer. It could open the floodgates for the development of products that contain tetrahydrocannabinol (THC), which is the psychoactive compound in marijuana.  Some research suggests THC alone, or THC and cannabidiol (CBD) combined, could be more effective than CBD alone for treating pain, anxiety, insomnia and other conditions. More research could discover life-changing new treatments.

Since THC has rewarding properties, such as inducing euphoria, any drug that includes THC would likely be a controlled substance. Nevertheless, decriminalizing marijuana would create enormous economic opportunities for growers and anyone in the business of finding solutions to medical problems for which marijuana or its derivatives may be useful.

It doesn’t seem likely that marijuana will be decriminalized at the federal level this year. Congress criminalized marijuana in 1937 and all attempts to reform the law at the federal level have ultimately failed. Our current Senate is unlikely to change the status quo.

But the upcoming election will likely determine whether the MORE Act has a chance to become law in the near future. Democratic presidential candidate Joe Biden supports legalization and decriminalization at the federal level, while President Trump is generally opposed to changing federal marijuana laws. The election will also determine which party controls the House and Senate.

It behooves every voter to become familiar with the candidates' positions regarding cannabis. Criminalizing marijuana has caused great harm. We, as voters, have the power to change that.  

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.

A Pained Life: Don’t Throw Out the Bathwater

By Carol Levy, PNN Columnist

In 1976, my trigeminal neuralgia started. In those days, the environment regarding chronic pain was very different. My doctor had only one agenda: He wanted to stop or reduce my constant debilitating and disabling pain.

He couldn’t cure me, so he ordered opioid pain medication. When one opioid didn’t work, he tried another; Darvon, Percocet, Percodan, Demerol. So many I can’t recall them all. When none helped, he prescribed an 8-ounce bottle of opium.

The first pharmacist who saw the opium prescription shook his head. “Sorry. We don't carry it,” he said. The next pharmacy did. “Have a seat. It'll just be a few minutes,” the pharmacist said.

I wasn't looked at askance. No questions were asked about my doctor or diagnosis. I wasn’t warned: “This is a very strong drug. You need to be careful. You could become addicted.”

They trusted that my doctor knew what he was doing. They trusted me to be a responsible patient. I doubt it ever entered the pharmacist’s mind that I might be a drug seeker or abuser.

Now the tables have totally turned. Many of us get questioned by pharmacists. And some of our doctors have stopped writing opioid prescriptions. They should be cautious, right? Because opioids are addictive, you can become dependent or have other bad side effects. And they can be used illegally.

The same is true for steroids. Yet there seem to be no politicians, physicians or groups with an agenda that are working to scare the public about steroids or trying to get doctors to stop “overprescribing” them.  

When steroids first came out there were many, many horror stories about them. The 1956 film Bigger Than Life was about a school teacher (James Mason) taking corticosteroids. They helped his pain from an autoimmune disorder, but he soon became hyper-manic and ultimately psychotic, even trying to murder his son.

His doctor reduced the dosage, but because steroids helped his pain, the teacher continued to take more than prescribed. He even goes to another town, impersonates a doctor, and writes a fake prescription to obtain more of the pills.

Sound familiar?

The movie was a caricature of the potential risks of steroids, which include dependency and addiction. Opioids have the same risks, but most patients with chronic pain take them responsibly, as most on steroids do, and they do not become addicted, try to obtain them fraudulently or go off the deep end.

There will always be bad actors who will be irresponsible, but users of any medication should not be demonized because of a few bad apples. Steroids are easily obtained and the patients who use them are not seen as potential felons. And why would they? For most patients, steroids can be very helpful.

Those who can still get opioids for their pain are often seen as potential miscreants. Yet studies also show that for most patients, opioids do help.

You don’t throw out the baby with the bathwater. You don’t create guidelines scaring doctors into not writing steroid prescriptions because a small percentage of people will misuse or abuse them.

The medical community and the government need to stop throwing out the bathwater. When they refuse to write prescriptions for opioids that have helped patients, the side effect — intentional or not — is to throw us away, too.

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.

Meeting the Doctor Who Helped Me Most

By Barby Ingle, PNN Columnist

In honor of September being Pain Awareness Month, I wanted to give homage to the doctor who helped me most over the past 20 years. He was in my life for about 6 years of this journey, before he retired, but he has given me tools for a lifetime.

When I arrived at Dr. Robert Schwartzman’s office for the first time, I was excited. I had met him a few years prior at a medical conference, where he agreed to treat me. Dr. Schwartzman is one of the world’s leading experts on Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). Due to high demand from other patients, there was a waiting list to see him.

I was in my wheelchair and had made the trip to Pennsylvania from Virginia, where I was staying with my sister and her husband. At the time, I was hurting all over and many of my symptoms were flaring due to the travel.  I had many types of pain going on: burning, stabbing, electric, shooting, deep, surface and bone pain. I was dizzy and felt nauseated.

My name was called and my sister and I went to the exam room. The nurse was very nice and asked all the right questions. She had me put on a gown. Then we waited.

When Dr. Schwartzman walked into the exam room to see me, he was followed by about 9 student doctors. His first words were, “Now she has Reflex Sympathetic Dystrophy. Anyone should be able to see it at first glance.” He then began pointing out all of the symptoms I had from the RSD. He knew things before I even said anything.

The doctors saw the blanching in my skin. From my face to my feet, I had discoloration. I never paid that much attention to how bad it had gotten over the years; maybe because it happened over time. I took pictures of it, but did not know that it meant RSD had spread to those areas.

The most severe burning pain was on the right side of my body. I had all the other types of pain on the left side, but the atrophy and lack of coordination were not as bad.

DR. ROBERT SCHWARTZMAN

When Dr. Schwartzman began to do neurological testing on both sides, I felt the pain. The right side was worse, but the left side was definitely affected. He discussed me being diagnosed incorrectly by my other doctors with Thoracic Outlet Syndrome and having my rib removed twice. He also guessed correctly that I had been diagnosed with temporomandibular joint dysfunction (TMJD) because of the facial pain and that I was having issues with my thyroid.

He remarked about my sweating, the swelling in some areas, and asked about my low-grade fevers, Horner syndrome and more. He discussed and noted the atrophy in my hands, arms, legs, feet, face, back and the dystonia in my hands and feet. By discussed, I mean he discussed it with the other doctors. Dr. Schwartzman hardly spoke to me.

Next, he had me do neurological tests. An easy one that you can do right now involves your hand. Take the tip of your index finger and tap it to the tip of your thumb as many times and as fast as you can. I thought that I did it very well, especially with my left hand. But Dr. Schwartzman explained the way I did it was awkward and slow, which was another symptom.

I did not understand, so he showed me. He could tap his fingers so fast that it looked like I was going in slow motion. Since then, when I ask others to do the same thing, I am amazed that I cannot go as fast, no matter how hard I try.

He watched me smile, had me stick my tongue out, and then asked if I had trouble swallowing and if my voice goes in and out sometimes. I said, "Yes, how did you know?" He said that the RSD was affecting my throat and intestines.

I had been diagnosed with gastrointestinal ischemia and gastroparesis a few years earlier. The hospitalist that performed the tests said there is a section of my intestines that was getting little to no blood. I did not understand how that was related to the RSD until I saw Dr. Schwartzman and learned that RSD causes vascular constriction, which can make it difficult to get an IV line inserted or even do blood tests.

I never realized that vascular constriction could also affect organs. I thought I was just eating too quickly or being lazy when I choked on food. I did not know why my voice changed or why I would lose it sometimes. The RSD even affected the way my nails and hair grow.

Dr. Schwartzman was spot on with everything. He added that whiplash or brachia plexus injuries are a leading cause of upper extremity RSD. Because of my additional traumas and surgeries, the RSD had spread.

Ketamine Infusions

Sometime near the end of the exam, Dr. Schwartzman said to the student doctors, “The only thing that will help this patient 100% is the coma treatment.”

I was shocked. I thought I was going to be getting outpatient ketamine infusions. I began to tear up. I kept telling myself not to cry. It is never good to cry at a doctor’s office. I wanted to be taken seriously and be strong. As soon as they left the room, tears flowed down my face. The nurse said she would be right back with all of the instructions and scripts that he was giving me.

I did not have any idea of the issues that were involved with RSD or that I had many of the symptoms. Instead of starting right away, I had to wait another 9 months to get a bed in the hospital, where I underwent 7 days of inpatient ICU ketamine infusions.

I went into the hospital in a wheelchair, but walked out on my own a week later, ready to live the next chapter in my life. That was Dec. 14, 2009. I still undergo ketamine infusion therapy about 4 times a year for booster treatments, but I am no longer on daily medications for pain.

I thank Dr. Schwartzman and all the research doctors out there coming up with treatments and scientific data for people like me with chronic rare diseases and severe life changing pain. We should always remember there is reason for hope. We just have to be active in seeking and using all of the resources available.

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.  

Can LSD Be Used to Treat Pain?

By Roger Chriss, PNN Columnist

The well-known hallucinogen LSD may have a new use. A new study published in the Journal of Psychopharmacology found evidence that LSD exerts a “protracted analgesic effect” at low doses.

The study was performed in The Netherlands on 24 healthy volunteers. Three low doses of LSD or placebo were given to the participants, who immersed a hand in near freezing water 90 minutes and five hours after dosing to assess their pain tolerance.

Results from the “Cold Pressor Test” showed that 20 micrograms of LSD “significantly increased the time that participants were able to tolerate exposure to cold (3°C) water and decreased their subjective levels of experienced pain and unpleasantness.”

It is not clear how or why LSD increased tolerance to cold water. The study authors speculate about LSD’s various actions on serotonin receptors, but also note that “an additional or alternative explanation for the analgesic effects of LSD could be hypertension-associated hypoalgesia.”

There were side effects from LSD, even at low doses. LSD slightly raised blood pressure and increased feelings of dissociation, anxiety and somatization in the volunteers. Psychological and cognitive effects were described as “very mild.”

The study has other important limitations. The Cold Pressor Test is not a good analog for real-world acute pain. And healthy volunteers in such studies tend not to be typical of the population at large. They skew young, male, and often have prior experience with the substance being evaluated that most people do not have.

Also, these studies tend not to translate to real-world use. Recent work on LSD microdosing has found “few benefits and significant downsides.”

Findings Hyped

Unfortunately, this preliminary study has already led to hype about the analgesic potential of LSD. New Atlas called it  “an incredible, first-of-its kind trial” and Futurism reported that LSD microdoses were “as effective as opioids at treating pain.”  Interesting Engineering predicted “there could be possible applications of LSD as a non-addictive pain medication.”

The Beckley Foundation, which funded the study, fed the hype with a news release that claimed the analgesic effects of LSD were “remarkably” similar to oxycodone and morphine, but without the risk of addiction.

“The present data suggests low doses of LSD could constitute a useful pain management treatment option that is not only effective in patients but is also devoid of the problematic consequences associated with current mainstay drugs, such as opioids,” said Amanda Feilding, Founder and Director of the Beckley Foundation. “We must continue to explore this with the aim of providing safer, non-addictive alternatives to pain management, and to bring people in pain a step closer to living happier, healthier and fully expressed lives.”

Misunderstanding Pain Research

The Cold Pressor Test is a standard way to assess pain threshold and tolerance. But results in the test vary significantly with water temperature, and the test is not seen as a precise analog with real-world pain. As a 2016 review noted, “No single experimental model can mimic the complex nature of clinical pain.”

Pain is a biopsychosocial phenomenon involving a long chain of interactions that start with peripheral sensory nerve endings and manifest in the conscious mind. Analgesic effect can be achieved locally in nerve endings, as seen with lidocaine injections; or intermediately in the spinal cord, as seen with radio frequency ablation or spinal cord simulators; or centrally in the brain, as seen with psychoactive drugs.

Therefore, comparing analgesic efficacy is far more complex than just looking at outcomes in a simple lab-induced pain model in a handful of healthy people. The LSD study did not test its subjects with multiple substances or combinations of substances.

Further, analgesics have to be safe and effective. Safety includes understanding possible drug-drug interactions. A 2008 review noted that “lithium and some tricyclic antidepressants have also been reported to increase the effects of LSD.”

A 2019 study describes several important biochemical pathways and gene polymorphisms in LSD metabolism, possibly affecting pharmacokinetics and pharmacodynamics. The article concludes that “drug-drug interaction studies in humans are required to further assess the clinical relevance of these findings.”

Analgesics like acetaminophen have relatively few drug-drug interactions. Opioids have a number of important ones, but these are well-understood and can be controlled. By contrast, cannabis is messy. Drugs.com lists 24 major and 353 moderate interactions for cannabis. There is no such list for LSD.

Pain medication needs to be effective as well as safe and reliable. Demonstrating efficacy requires far more than a handful of willing subjects being subjected to a simulated pain experience in a laboratory setting. Demonstrating safety and reliability will require extensive testing, pharmacodynamic studies, and research on drug-drug interactions. LSD may have taken the first step toward becoming an analgesic, but there is a long road ahead.

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. 

CDC Is Prioritizing Politics Over Science

By Dr. Lynn Webster, PNN Columnist

For most of my career, I have revered the Centers for Disease Control and Prevention (CDC). I believed it had the best scientists in the world, and that we could and should believe everything they said.

Not anymore. Unfortunately, the CDC has devolved into a partisan mouthpiece for politicians and people with agendas not supported by science.

The Academy Award-winning documentary Under Our Skin first showed me how politics can influence decisions at the CDC. The film illustrates how chronic Lyme disease (CLD) can cause a great deal of suffering, including chronic pain and fatigue. But the medical community has been unwilling to respond appropriately because the government has determined that CLD is a "controversial" diagnosis.

As a result, patients with Lyme disease often go undiagnosed and untreated until their symptoms worsen. The ongoing "Lyme wars" make it difficult for them to get testing and treatment.

Contagion is a theatrical movie about a pandemic that shows the CDC making decisions based on the political aspirations of key CDC officers. But this fictional story about a pandemic and the power-seeking nature of CDC officials was unfortunately prescient.

CDC Has Done Better

We have seen the tremendous work the CDC can do worldwide. The Ebola virus was contained, and potentially millions of lives were saved, because of the stellar work of enormously talented and dedicated CDC scientists.

The CDC activated its Emergency Response Center to protect the United States and its territories from the threat of the Zika virus, which can cause birth defects and Guillain-Barré Syndrome. My childbearing-age daughter cancelled trips to areas that the CDC warned posed a high risk.

The agency conducted more than 160,000 Zika virus tests, created registries to track pregnant women who were known to be infected with the virus, and provided $251 million in grants to state and local health departments. Their ongoing efforts to minimize the damage from Zika demonstrates the exemplary work the CDC can perform.

CDC's Politicization Is Not Partisan

The politicizing of the CDC is nothing new. During the Obama administration, the CDC became a tool of anti-opioid zealots. Republican Rep. Harold (Hal) Rogers of Kentucky is a senior member of the House Appropriations Committee. You may have heard his name recently, because he helped determine the amount of the CDC's emergency funding for the coronavirus.  

President Obama joined Rogers at the National RX Drug Abuse and Heroin Summit in 2016 to support increased funding to address prescription drug abuse. That action ignored the larger problem of illicit drug abuse and the fact that the opioid crisis has been mischaracterized as a prescription drug problem.

CDC Harmed Millions With Its Opioid Guideline

When Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group, was unable to get what they demanded from the FDA through a citizen petition, they turned to the CDC, where they found political allies. This led to the now infamous CDC Guideline for Prescribing Opioids for Chronic Pain in 2016. 

The guideline has caused enormous harm to millions of Americans. Recently, the American Medical Association implored the CDC to significantly change the guideline "to protect patients with pain from the ongoing unintended consequences and misapplication of the guidance." Even the guideline’s authors have backpedaled, acknowledging it has been misapplied to withhold opioid medication from patients who need it.

Yet the harm continues. Alarmingly, the Department of Justice interprets the guideline as a mandate, warning and sometimes prosecuting doctors who do not follow its voluntary recommendations. Dozens of states have blindly adopted the guideline in a naïve attempt to address the rising number of drug overdose deaths, either not understanding or ignoring the fact that most overdoses are due to illicit, rather than prescription drugs. 

COVID-19 Flip Flops

Now we see the CDC yo-yoing with their recommendations regarding COVID-19. Initially, the CDC said that masks were not necessary, except for those who were sick or taking care of someone who was sick. Now they recommend that everyone wear a mask. The Trump administration wants to leave that decision up to individuals, so they have not issued a federal mask mandate. This is contrary to the advice of most experts.

The CDC has also stated that testing for COVID-19 is important. But when the administration apparently pressured the CDC to change their position and recommend that asymptomatic people who were exposed to the virus not get tested, they did so, allowing politics to trump (no pun intended) science. CDC Director Dr. Robert Redfeld has now reversed his position and said COVID-19 testing is important for those who have been exposed to the virus, even if they are asymptomatic.

I agree with Dr. Leana Wen, a well-recognized authority on public health, who wrote in The Washington Post that the CDC’s testing guidance was “nonsensical.”

"I worry that this CDC change is part of a larger pattern of diluting recommendations when the federal government can’t do its job properly," Wen wrote.

Perhaps we all should worry. Who and what are we to believe? I, for one, can no longer believe what the CDC says unless it is verified by non-partisan scientific bodies.

This is a sad time. Our health is being played with as if it were a game. I feel like a commoner in Game of Thrones, as the kings fight for power and ignore their people. We, the commoners, should insist that the CDC become an independent agency no longer headed by a political appointee, so it would be unassailable by politicians who are more interested in controlling messages than diseases. 

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.

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.