Checking the Boxes: Why Therapy Was Not Helpful

By Mia Maysack, PNN Columnist

Living with persistent pain or chronic illness is enough to push anyone to the brink of insanity. I’ve reached out for mental health assistance in the past, and either regretted it or didn’t feel it was much help at all.

I later came to the realization that therapy could only ever be what we make of it, so I decided to release the disappointment from the past and give it another wholehearted try.

I learned that the therapy process, particularly since COVID-19, is a nightmare. The isolation of the pandemic helped us recognize the importance of mental health, along with the fact that there’s a shortage of providers. It’s now nearly impossible to find a therapist.

It’s even more difficult to come across one that is accepting new patients and whatever insurance you might or might not have. I spent the better part of a year researching, making phone calls and being told no, before I finally came across a situation that seemed promising.

After providing extensive documentation exploring every aspect of my life and then playing the waiting game to get the green light from insurance, I was finally able to move forward with scheduling an appointment at a clinic. It would have been many more months before I could be seen in-person, so I settled for a virtual appointment.

I was happy to connect with a provider, who initially seemed warm and caring. Little did I realize how short lived this would be.

During our conversation, we covered the basics. I attempted to explain how anyone who lives the way that I do must experience some form of depression or sadness, but that doesn’t necessarily mean that I always feel that way. I don’t feel a need to label people as “sad” or “depressed,” for I believe there’s a wide spectrum we all exist on. We can allow ourselves to feel sad or anxious in any given moment, without necessarily committing to that experience permanently.

Prior to this therapy session, I’d been participating in a behavioral health program where a provider would call once every few weeks for a momentary check-in. Being that I had no other support at that time, I was thankful for the resource and couldn’t help but imagine what different points in my life would’ve been like had something like that been available then.

I’m under the impression this check-in option was cultivated during the pandemic in an attempt to alleviate the mental health stress that so many of us were having.  It’s more of a band-aid than anything else, but slowing the emotional bleeding can be the difference between life or death for many.

I remember having a pleasant conversation with someone who reached out. We chatted for about a half hour as they listened to some of my health-related goals, then advised me they’d have someone follow up to ensure the plan was proceeding smoothly.  

At the very last second, they requested I complete a survey -- one that I’d done countless times already: the PHQ-9 questionnaire.  It asks how you were feeling in the last two weeks and to rate your experiences on a numeric scale.  Was I tired? Feeling hopeless? Eating enough? Eating too much? Was I thinking of hurting myself?

Ending the phone call on such a note turned an otherwise enjoyable and productive conversation into a traumatic reminder of the ways I’d been struggling. Then the session was over and I was on my own again.

On the next call, I offered feedback -- mentioning the survey should come sooner in the conversation and empower the patient to choose when they’d complete it or even not take it. That should be my right and my choice.

I was advised that the survey was part of the process of getting a diagnosis. The therapist said this wasn’t so much the clinic’s way of doing things, but rather “served insurance purposes.” That rubbed me the wrong way.

Here I was, absolutely desperate for therapy, but instead of receiving actual help, I was reminded once again that the most important thing for a provider is to collect patient data. With a heavy heart, I chose to end my pursuit of counseling. It feels harmful and unsafe to be reminded that “checking the boxes” is prioritized over the quality of human life.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

Staying Active Is Vital for People with Pain

By Joanne Dickson, Edith Cowan University

Chronic pain affects around one in five people and is considered “chronic” when it persists beyond the expected healing time, typically three months or longer.

Along with physical problems, chronic pain can impact a person’s daily activities, employment, lifestyle and mental health.

Doing things you love and having goals are fundamental for wellbeing because they give meaning and purpose. But pain can make doing the activities you enjoy psychologically, physically and/or emotionally very challenging.

Our new research shows the way a person with chronic pain responds to not being able to participate in the activities or goals they value can impact their mental wellbeing – even more so than their pain levels.

We surveyed more than 300 people living chronic pain (that wasn’t related to cancer) about their mental wellbeing, “pain intensity” and how much pain interfered with the everyday pursuits and activities that mattered to them. We differentiated chronic pain from cancer pain due to the differing prognoses and treatments available, and the unique psychological and social factors associated with cancer pain, such as concern about death.

We found pain that disrupted daily life activities, rather than the intensity of the pain, posed the biggest threat to a person’s mental wellbeing.

When pain interferes with a person’s engagement in meaningful daily activities, it causes distress and decreases wellbeing.

The research suggests it’s possible for people to find ways to maintain their mental wellbeing, even when their pain intensity is high, so long as they’re able to maintain aspects of life that are important to them, such as relationships and work.

Find Other Ways to Do Things

We found personal motivational traits – specifically, goal flexibility (adjusting goals in response to changing circumstances and setbacks) and tenacity (persistently striving to achieve a desired goal under difficult circumstances) – were associated with increases in mental wellbeing for people living with chronic pain.

Although flexibility and persistence were both associated with increased mental wellbeing, the capacity to flexibly adjust to setbacks or obstacles had the most significant positive effect in maintaining one’s mental wellbeing.

Flexibility appears to act as a protective factor against the impacts of pain interference on mental wellbeing, to a greater extent than personal tenacity or persistence.

There is often more than one way to modify or adapt an activity when difficulties arise. A walk on the beach with friends, for instance, may be adjusted to meeting at the beach for coffee to fulfil the same goal or value: social connectedness.

Focus on What You Can Do, Not What You Can’t

Psychological processes that can help people to live well in the face of long-term pain have long been overlooked. Research has traditionally focused on unhelpful thought processes that perpetuate or exacerbate mental distress. For example, pain catastrophising and repeated negative self-criticism.

Pain management and mental health are multi-faceted. Previous research has shown pain management should take into account physical factors (age, sleep, injury, disease) and social factors (employment, social support, economic factors).

Our findings add to this body of knowledge. For those living with pain, reappraising and adjusting meaningful life activities and goals, when needed, in response to setbacks or life challenges can help maintain mental wellbeing.

These findings can inform the development of psychological supports for people with chronic pain. In turn, these supports could identify internal strengths, resources, positive coping strategies, self-efficacy, hope and wellbeing – and promote psychological strengths rather than deficits.

Joanne Dickson, PhD, is a Professor of Psychology & Mental Health at Edith Cowan University in Australia. Joanne’s main research interests are in the areas of goal-motivation, prospective cognition and emotion-regulation processes in mental health and well-being. She collaborates with national and international researchers in Australia, the UK and USA.  

This article originally appeared in The Conversation and is republished with permission.

Opioid Tapering Raises Risk of Overdose and Mental Health Crisis

By Pat Anson, PNN Editor

Tapering patients to lower doses of opioid pain medication significantly raises the risk of opioid withdrawal, drug overdose and a mental health crisis such as depression, anxiety or suicide attempt, according to a large new study. For most patients, the risk remains elevated up to two years after their doses were reduced.

Opioid prescribing has fallen dramatically in the United States over the past decade, particularly after the release of the CDC’s controversial opioid guideline in 2016. Although millions of patients were affected, few efforts were made to study patient outcomes or what happens to those who have their opioid doses reduced or even stopped.

To address this knowledge gap, researchers at the University of California Davis School of Medicine analyzed health data for over 19,300 patients on long-term opioid therapy who had their doses reduced by at least 15 percent. In addition to medical and pharmacy claims, researchers looked at emergency room visits and hospital admissions for overdose, withdrawal or mental health crisis, both before and after tapering.

"We used an innovative observational study design to understand the patients' experience before and after opioid dose reduction. We compared outcome rates in pre- and post-taper periods with patients serving as their own controls," said co-author Daniel Tancredi, PhD, a pediatrics professor at UC Davis Health.

"While patients may struggle during the early tapering period, we reasoned that many may stabilize with longer-term follow-up and have lower rates of overdose and mental health crisis once a lower opioid dose is achieved," said lead author Joshua Fenton, MD, professor and vice chair of research at UC Davis School of Medicine.

But Fenton and his colleagues found patients continued to struggle long after their doses were cut. Their findings, published in JAMA Network Open, show a 57% increase in overdose or withdrawal incidents and a 52% increase in mental health crises 12 to 24 months after doses were lowered.

For every 100 patients during pre-tapering, there was an average of 3.5 overdose or withdrawal events and 3 mental health crises. After tapering, there were 5.4 overdose/withdrawal events and 4.4 mental health crises for every 100 patients. The risks associated with tapering were greatest in patients with the highest doses.

"Our findings suggest that, for most tapering patients, elevated risks of overdose and mental health crisis persist for up to two years after taper initiation," said Fenton. "We hope this work will inform a more cautious approach to decisions around opioid dose tapering."

An earlier study at UC Davis found that tapered patients were 68% more likely to be treated at a hospital for opioid withdrawal, overdose or alcohol intoxication, and were twice as likely to have a mental health crisis.

‘I Was Cut Off Cold Turkey’

The FDA warned in 2019 that rapid tapering or abrupt discontinuation was causing serious harm to patients. The CDC Director also pledged that year to evaluate the impact of the agency’s opioid guideline on patients and to “clarify its recommendations.”

Three years later, not a word of the CDC guideline has changed and the agency is slow walking efforts to revise it. A revised guideline draft, which cautions doctors to avoid rapid tapering or discontinuation, is not expected to be finalized until late this year. In the meantime, many doctors continue to taper patients – even those who’ve taken opioids safely and responsibly for years.

“Yesterday, I was cut off of one of my opioid medications, cold turkey. I've been given one last 30-day supply of the other, after 19 years of chronic pain treatment with opioid medication. I am bedridden,” a patient told us in a recent PNN survey on the impact of the 2016 guideline.

“Currently my pain management doctor is tapering everyone from schedule II (opioid) medications, even with years of good results and no side effects. This is dangerous when people are dealing with real pain,” said another patient.

“Before the guidelines, my pain was controlled with fentanyl patches and Vicodin for breakthrough pain. I was able to work, care for my home and family. That's all been taken away and now I spend my time either in bed or on my couch, in pain. Tapering down was 7 months of hell in my bedroom. It was cruel and unnecessary to take away medicine that allowed me to enjoy and participate in my life,” another patient wrote.

In an editorial also published in JAMA Network Open, two University of Alabama at Birmingham researchers who are studying the role of tapering in patient suicides urged doctors to be more cautious.

“Our view is that opioid dose reduction is likely to offer benefit for some, while harming others. The harms may include worsening pain, distress, or death,” wrote Stefan Kertesz, MD, and Allyson Varley, PhD. “Given this uncertain balance of harm and benefit, it would be wise for health systems to stop promoting this change to care. A policy of tapering all patients to doses lower than a specified threshold cannot be supported from available evidence.”

Kertesz and Varley are currently recruiting family and friends of patients who died by suicide to participate in a pilot study about the impact of opioid tapering on their loved ones. To participate in their study, click here to take an online survey or call 1-866-283-7223.

To Each Life Their Own

By Mia Maysack, PNN Columnist

May is Mental Health Awareness Month, a good time to write about a topic that needs more attention, but one that makes many of us uncomfortable: suicide.

I know people who have tried to end their lives. There was one who almost succeeded. I was still in decent enough health at the time to be working in the nursing field and it just so happened to be my hospital they were brought to. I entered the room in time to watch their stomach being pumped with charcoal, which is the process used to rid the body of whatever has been ingested.  

After being revived, this person's first words to me were: "Why didn't you let me die?" 

My already broken heart shattered once again into a million pieces. Being much younger at the time, I couldn't begin to understand and took the experience personally. Now I’m old enough to know that someone’s choices about their own life have absolutely nothing to do with me. 

Fast forward a few years, and I found myself in a clinical support group at a time when my pain ran rampant and dictated every aspect of my existence. That’s what led me to the textbook-based, power-point class that was instructed by low-energy penny counters. I was that desperate for help. 

During one session, we broke out into smaller groups. On one side of me, there was someone who'd lived in unmanageable pain for 40 years. They were fed up with prior authorizations, insurance hoops and failed treatment options, and confided to the group that they were making plans to move where medically assisted suicide was legal. 

On my other side was someone who claimed they had never felt suicidal and couldn't begin to relate to the other person. In fact, it made them so uncomfortable that they excused themselves from the conversation and went to go tell on the other individual. 

It's human nature to avoid discomfort, but we don't always know how to create space for others who are suffering without also judging them. 

Between these two extremes, there was me -- literally and figuratively in the middle. After class, I watched as the instructors approached the individual in a hushed whisper and exchanged a slip of paper with a suicide hotline number on it.

I witnessed this person break down -- almost as if they were being scolded -- and couldn't help but think that if it was me standing on the edge and was essentially being told to go away and deal with it elsewhere, that might be the very last thing a person would do. And how that would be such a failure on our part. 

It was then that I began my own support group network, which eventually evolved into more of a self-help resource because I personally feel that while support is important, it can only take us so far. 

Despite living in agony, I spent many years clinging to my medical career. At one point I was working in hospice, where I was confronted daily by the truest definition of suffering -- seeing patients barely hanging on for the sake of their families, despite their desire to let go. 

It was then I contemplated who is being more selfish. Is it the person who no longer wants to remain alive because they are already dead inside or those demanding that they go on living? 

There's no right answer to that question. That isn't to belittle how anyone feels on either end of that spectrum, but more a rhetorical point to ponder.  

For many reasons, these last couple of years have been the most difficult of my life and I came the closest I've ever been to ending my own life. Lack of hope is one of the most dangerous places to be. The darkness is all consuming.  

I'm someone who is known for their positivity. It is noticed when I am not acting like myself or feeling a lower level of energy.  People depend upon me to be level headed and focused on the more uplifting aspects of life, but that can be a heavy weight to bear at times. 

It's a blessing to be in the position that I'm in and provide the type of counsel that I do. In fact, I now understand on a deeper level why my medical career meant so much to me. Showing up for others during their most trying times and hardest moments helped distract myself from my own inner turmoil. 

The same can be said about advocacy. Showing up for others whether or not I feel up to it, guiding them to their own voice and sharing their truth  is a way to make something out of my pain. Perhaps I've endured all that I have to gift others with what I've managed to learn. If being human was just about me and what I go through, there’s no way I’d be able to make it.

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. 

Patients Shouldn't Have to Choose Between Opioids and Mental Health Drugs

By Victoria Reed, PNN Columnist

I belong to several online chronic pain support groups. One thing I often notice is that many people say that they’ve been forced to choose between their psychiatric meds and their pain relievers.

Depression is a serious condition that affects many people in the pain community and is often accompanied by anxiety and insomnia. Anxiety is often treated with a class of medication known as benzodiazepines. It is primarily “benzos” that patients are being told to give up in order to continue receiving opioids.

The reason for this is that opioids and benzos depress the central nervous system and raise the risk of respiratory depression – which is slow and ineffective breathing. Mild cases can result in tiredness, daytime sleepiness and shortness of breath. More serious cases can lead to seizures, headaches and even death.

In 2016, the CDC told doctors to “avoid prescribing opioid pain medication and benzodiazepines concurrently whenever possible” and the FDA updated drug labels to warn about the “serious risks” of taking the medications concurrently.

This issue hits home for me because a close relative of mine is on psychiatric medication and also suffers from chronic pain. Currently, she only uses over-the-counter meds for the pain of fibromyalgia, but there may come a time when she might need a stronger opioid pain reliever, as fibromyalgia is progressive and tends to worsen over time.

Will she be able to get a prescription pain medication without having to give up her psychiatric meds? Doctors are already reluctant to prescribe opioids, especially if a patient is being treated with a benzodiazepine or another psychiatric drug, such as those used to treat ADHD.

As mental health conditions worsen due to the stress of the pandemic, many are going to need to stay on their medications. Doctors forcing people to choose between their pain meds and psychiatric meds is only going to worsen the problem of illicit drug use. Sadly, the number of suicides will increase as well.

Being in a situation of having to choose one med over another when you need both, is obviously never good. I hope that my relative never finds herself in this situation.

Many pain sufferers have taken opioids and benzos safely and responsibly for years. They should not be forced to choose between the two drugs, as long they are medically necessary and appropriate.

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

Why Doctors Need to Address Stigma and Guilt Caused by Chronic Pain

By Dr. Joseph Cabaret, Guest Columnist

Chronic pain is known to affect more than one in five American adults. That’s about 50 million people who feel pain most days or every day – leaving them trapped in a cycle of physical pain. Worse yet, a recent study found that those suffering from chronic pain often deal with guilt-induced feelings and social stigma as a result of it.

To those unfamiliar with the reality of living with chronic pain, feeling guilt over such a condition may seem strange. But the reasons for it become pretty obvious once you reflect on them and recognize the harm they cause. Guilt-induced feelings can lead to severe mental health issues and social stigma that debilitate a chronic pain sufferer's life even more.

What can medical professionals and the general public do to alleviate these issues?

Chronic pain is typically described as long-term pain that lasts at least three months and has no end in sight. It is both a physical and an emotional experience, although sadly the emotional component is rarely addressed adequately by patients or healthcare professionals.

Pain is often attributed to physical illnesses such as fibromyalgia, back problems, irritable bowel syndrome, post-surgical pain, cancer, arthritis, or even just headaches or migraines. Usually, the underlying emotional causes or contributors go undetected, and since there is often no easily discernible tissue damage present, its existence is not always obvious to a casual observer. But it is ever-present and can severely impact an individual's ability to live a full life.

Therapy, rather than a cure, is often the only recourse chronic pain sufferers have. This can take the form of art, music, or other hobbies and passions the patient has. The aim is simply to take their minds off the pain and give them an emotional outlet.

For many chronic pain sufferers, the worst part is not being able to plan for future events because they can’t predict how they will feel on a particular day. This leads to missed workdays, cancelled social events, and an ever-increasing downward spiral in their mental health.

Chronic Pain and Mental Health

Having to live with such a condition is bound to have negative consequences. Patients often suffer from depression, feelings of inadequacy, negative changes in identity, and difficulties with getting enough sleep.

Then there’s the added frustration of often not being able to make others understand the reality of their experience. To make matters worse, it is difficult for most patients to understand and acknowledge the impact that these psycho-social-spiritual factors have on their lives and why biomedical therapies alone don’t help. This can lead to feeling that they are somehow to be blamed.

Pain-related guilt often stems from a patient’s inability to convince others that their condition is legitimate. Since the causes of the pain are often not readily apparent (even after a medical examination), patients are sometimes treated like their condition is not real.

Doctor’s appointments often lead to a long line of questions that can make patients feel like a fraud or that their condition is entirely psychosomatic. This isn't helped either by the social stigma that sometimes puts the blame on the patient for not managing their condition well enough. Then there’s the personal guilt a patient can feel from not being able to fulfill their duties and responsibilities at home or at work.

Left unchecked, all of this can lead to severe mental health issues that can result in drug or alcohol abuse, total mental breakdown, and even suicide. It’s a facet of the nation’s ongoing mental health crisis that is too often ignored. 

How to Help Patients Address Guilt

In terms of addressing the chronic pain itself, there may be very little that doctors, family members or co-workers can do for someone. It is often simply something they must learn to live with. But there is a lot that can be done to lessen the patient’s feelings of guilt from their condition.

To start with, care should be taken to provide validation and reassurance that the patient's chronic pain is real. Chronic pain sufferers need to feel listened to and understood if they're to have any chance of living well with their condition.

By integrating behavioral health treatment with pain treatment, physicians can have a clearer understanding of what a patient is going through and what treatments are working. Through gentle and skillful counseling, patients can also learn to connect their pain to their emotional difficulties and better address them without the guilt that comes from misguided statements implying “it’s all in your head.”

Using technology for remote monitoring can be of help with this, providing a better understanding of a patient’s physical and mental condition, and leading to more valuable insights and better long-term care.

A better public awareness of the social stigma that chronic pain sufferers must deal with would also go a long way in helping them deal with their condition. Family members, friends and co-workers can help in this by refraining from criticizing or stigmatizing those with chronic pain. Instead, make them feel understood, validated and respected. They have so much to deal with, and a few kind words and social support can go a long way in making things easier for them.

With better awareness and understanding may come new treatments for chronic pain. Pain medicine is still a relatively new field, and much work remains to be done on understanding the causes of it and how it can be treated. Until then, often the best that medical professionals and the general public can do is make chronic pain sufferers feel less stigmatized and more understood.

Joseph Cabaret, MD, is a pain and addiction medicine specialist at Wellbrain, a digital health platform for doctors. WellBrain's founding Stanford, Harvard and Mayo Clinic trained physicians designed WellBrain to help providers assess, engage and monitor their patients’ physical and mental health over time.

Dr. Cabaret’s private practice is located in Camarillo, CA, where he specializes in Interventional Pain Management, Regenerative Medicine, and Addiction Medicine.

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

How I Learned To Live With and Manage Chronic Pain

By Beth Thorp, Guest Columnist

The CDC estimates that 50 million Americans – just over 20 percent of the adult population – have chronic pain.  About 20 million have “high-impact chronic pain,” which is defined as pain severe enough to frequently limit life or work activities. I am one of the “high-impact” ones.

For a long time, I did not believe that I had enough expertise or a unique enough story to share my experiences with pain, except with those closest to me.  But because of how often people tell me, “I don’t know how you do it!”; I began to believe that sharing my struggle to live with and manage chronic pain might help others who also suffer from it.

Like many others with severe chronic pain, I have had experience with using opioids.  Given the crackdown on doctors prescribing these medications, I felt that sharing all the other skills I use to manage my pain might be useful to other patients. 

I believe there are three aspects of our health which must be addressed if we are to have full and productive lives despite our pain. These are physical health, mental health and socialization.

Three-Part Model for Pain Management

Physical Health

When pain begins, the first and logical area to address is our physical health. It’s important to me to rely not just on pain medication, but a wide range of other modalities. These include:

• Physical therapy, including heat, ice, ultrasound, stretching, exercises, TENS

• Injections of steroids and analgesics

• Neuromodulation devices such as spinal cord stimulators

• The use of support tools, such as canes, walkers, wheelchairs, etc.

Some activities, like stretching, might be easy to incorporate into your daily life.  Exercise might take some trial and error to find types that help with pain and that you enjoy. Others, like using a wheelchair, might take overcoming the burden of stigma.   

For me, the idea of getting a wheelchair was initially out of the question.  But then my pain doctor suggested that it would be better to use one to travel in places like airports, museums and zoos so that I can better enjoy the experience, and have less pain during and afterwards.  Once I thought of it this way, it was an easier choice.

Mental Health

As my pain persisted, despite many physical and medical treatments, it became clear to me that I needed some additional resources to help my mind and spirit.  These treatments used to be considered outside of traditional Western medicine.  Additionally, these methods often require out-of-pocket payment. Some examples are:

• Counseling, talk therapy, hypnosis, Reiki

• Meditation and mindfulness

• Participation in activities designed to distract from the pain

• Antidepressant medications

• Focusing on the positive

There are other therapies which address both physical and mental health, including yoga, Pilates, acupuncture, therapeutic massage and tai chi. 

I rely more on distraction than on any other technique.  If one activity does not work, then I will go to another.  When I first heard about distraction, I did not believe that it would work -- but it really does.  Even getting out of one environment into another can help. 

I am still working on the technique of focusing on the positive rather than the negative.  I know this sounds a bit Pollyanna, but I believe it is important to move ahead with a good quality of life.  The goal is to be grateful for the things I can do, not ruminating on the things I have lost or can no longer do. Some examples of this are:

• Take “one day at a time.”  If today is bad, tomorrow is likely to be better

• Try new activities that fit within the scope of your current abilities

• Learn new skills or explore new areas to learn by taking classes, in person or online

• Find others who suffer from chronic pain and share ideas for living better

• Most of all, don’t give up! 

Socialization

The longer pain goes on, the more isolating it can be. I’ve experienced loneliness and solitude. Our world gets smaller as the number of things we can do shrinks and the things we can do become very restricted. 

One of the hardest things for many of us is to ask for help. Similarly, we don’t want to be a burden, so we don’t reach out to ask our friends and family to come over and spend time with us. 

In order to maintain a good quality of life, we must find our own ways to become or stay involved with others.  For example:

• Phone calls or Skype, FaceTime and Zoom meetings with family and friends

• Group activities such as book clubs, crafting circles, games nights, group lunches

To address mental health as well as socialization, joining a religious group, community organization or chronic pain support group can be very helpful.  You can also combine socialization and physical health with activities such as exercise classes or Silver Sneaker programs.

Three Changes Needed

I believe that there are three changes to our healthcare system which must be pursued in order to respond to the opioid crisis in ways that help patients with pain, not hurt them.

First, don’t punish patients by removing access to opioid medications. For some of us, they are the only thing that works. Work with us to help us take them responsibly. 

Second, the pharmaceutical industry should develop safe, effective and non-addictive pain medications for those of us with high impact chronic pain. 

Third, insurance companies should be required to pay for alternative treatments such as massage, acupuncture, yoga, etc. that are often recommended as alternatives to opioids. Those options are not really available to most patients with pain.

Chronic pain may last a lifetime.  Thus, it is critical to find ways to live a full and happy life despite the pain.  Different methods work for different people.  I believe that the most important thing is to try everything you can.  If one doesn’t work, try another.  Be sure to include physical, mental and social solutions.  And try to stay as positive as possible.  That’s how I do it.  You can do it too! 

Beth Thorp has lived with chronic pain from sciatica, neuropathy and osteoarthritis for almost 25 years. She’s had multiple back surgeries, including two implanted stimulators.

Beth worked for 34 years in the pharmaceutical industry, including as a partner in her own consulting firm. She is now retired and spends her time with her family, as well as knitting, quilting, reading and exercising.

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

Advocacy Group Seeks to Expand Insurance Coverage of Ketamine

By Pat Anson, PNN Editor

A coalition of patients and healthcare providers is launching an effort to expand insurance coverage for ketamine, a non-opioid anesthetic increasingly used to treat chronic pain, depression and post-traumatic stress disorder (PTSD).

Ketamine is typically administered by infusion under strict medical supervision, a process that that can take up to an hour and cost thousands of dollars. The first goal of the Ketamine Taskforce is to get ketamine infusions fully covered by Medicare.

“Medicare doesn’t officially pay for ketamine infusions. What they will pay for is a generic infusion code similar to if someone was getting an antibiotic infused. The level of reimbursement is very low,” says Kimberley Juroviesky, a retired nurse practitioner and task force co-chair who receives ketamine infusions for Complex Regional Pain Syndrome (CRPS). 

“Since these reimbursement rates are so low, the majority of small ketamine clinics don’t accept insurance. This leaves the majority of pain patients without the pain relief they could otherwise be benefiting from.”

Ketamine is approved by the Food and Drug Administration as a surgical anesthetic, but a growing number of ketamine clinics provide off-label infusions for depression, PTSD and difficult chronic pain conditions such as CRPS. The infusions put patients into a hypnotic, dream-like state — leaving them with less physical and emotional pain once the ketamine wears off. Many insurers consider this off-label use experimental.

“If we could get Medicare to officially put ketamine on their schedule as a treatment for chronic pain, this would hopefully raise reimbursement rates to a level where all providers could afford it. Also, this would force private insurers to pay for ketamine infusions as well and no longer refuse to pay saying it’s experimental,” Juroviesky said in an email. 

PNN columnists Barby Ingle and Madora Pennington have both had ketamine infusions, Barby for CRPS and Madora while recovering from foot surgery.

“The swelling in my foot dramatically improved. Chronic, low-grade discomfort along my spine also disappeared. I felt emotional relief from past trauma, from pain and other life experiences,” Madora explained.

“I went into the hospital in a wheelchair, but walked out on my own a week later,” said Barby, after seven days of ketamine infusions. She now gets “booster” infusions four times a year and no longer takes daily pain medication.

Some ketamine users report lingering side effects, such as hallucinations and visual disturbances. Guidelines from the American Society of Anesthesiologists, American Society of Regional Anesthesia and Pain Medicine, and the American Academy of Pain Medicine only support ketamine infusions for CRPS and short-term acute pain.

“Excluding CRPS, there was no evidence supporting ketamine infusions for intermediate or long-term improvements in pain," the guidelines warn.

The Ketamine Taskforce is working with a consortium of ketamine clinics, collecting data on the safety and efficacy of infusions. That research will be shared with the Centers for Medicare and Medicaid Services (CMS) in an effort to expand Medicare coverage of ketamine for pain and mental health conditions.

Don’t Put All Chronic Pain Patients in the Same Basket

By Carol Levy, PNN Columnist

I recently read an article in KevinMD. The author, a family doctor in Maine, wrote about the need for more behavioral (mental) health treatment in primary care settings:

“We are doing that with chronic pain. Any patient who needs ongoing pain medication is required to attend four individual sessions to learn about what pain is, how the brain is the center of the pain experience, and how our pain experience can be altered by internal and external factors. We don’t use ‘pain scales’ for the simple reason that pain is never objective.”

As I read that, my blood boiled. I am sick of this concept that those of us with chronic pain need to be educated on how pain works, how our brains work, and how our pain can be mediated or controlled by mental health therapy.

Does a patient with cancer or arthritis need to be “educated” on how their brain works? Are they taught that the brain is the center of their health problems? Are they instructed with mumbo-jumbo about how their conditions can be “altered by internal and external factors”?

Or are they told what treatments are available for cancer or arthritis and how to deal with the symptoms?

It is not that I think education is unnecessary. The more we know and can understand about how our pain works, the better. It is important for patients with all diseases, not just ours, to know what we can and cannot do, what will make it worse, and what might help make it better.

But, once again, chronic pain patients are treated differently.  We can assist in our treatment only if we learn to change how we think and react to the symptoms.  

After I took a few deep breaths I calmed down. And gave it some further thought.

It occurs to me that the medical community often puts chronic pain conditions into one basket. But chronic back pain is not the same as pain from CRPS or trigeminal neuralgia. And rheumatoid arthritis and Ehlers-Danlos syndrome are not on the same level physiologically or psychologically as tension headaches.

It’s as though all cancers were considered as one. As though basal cell carcinoma - the least dangerous of cancers -- requires chemotherapy and radiation just like breast or lung cancer.

Many of us already have to fight not being accepted or believed by families, friends and colleagues. I wonder if it is time to put some of that energy into working with medical providers so they will accept that not all pain is the same.  And our needs should be treated as any other chronic medical condition.

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

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

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

Fibromyalgia and the High Risk of Suicide

By Pat Anson, PNN Editor

Studies have shown that fibromyalgia patients are 10 times more likely to die by suicide than the general population, and about three times more likely than other chronic pain patients.

What can be done to reduce that alarmingly high risk?

One possible solution is for fibromyalgia patients to visit a doctor more often, according to a new study published in the journal Arthritis Care & Research.

Researchers at Vanderbilt University Medical Center analyzed health data for nearly 8,900 fibromyalgia patients, finding 34 known suicide attempts and 96 documented cases of suicidal thoughts – also known as suicide ideation. Then they looked at how often the patients saw a doctor.

On average, patients who had suicidal thoughts spent 1.7 hours seeing a doctor per year, while those who did not have suicide ideation visited a doctor an average of 5.9 hours per year.

The difference was even more substantial for those who tried to commit suicide. Fibromyalgia patients who attempted suicide saw a doctor for less than an hour a year, compared to over 50 hours per year for those who did not try to kill themselves.

“Fifty hours versus one hour – that’s a staggering difference,” said lead author Lindsey McKernan, PhD, a professor of Psychiatry & Behavioral Sciences at Vanderbilt University Medical Center. “They might have been at one appointment in a year and this disorder, fibromyalgia, takes a lot to manage. It takes a lot of engagement.”

Fibromyalgia is characterized by deep tissue pain, fatigue, depression, insomnia and mood swings. Because fibromyalgia is difficult to diagnose and treat, there is a fair amount of stigma associated with it and patients often feel like they are not believed or taken seriously by their family, friends and doctors.

Self-isolation could be one reason fibromyalgia patients don’t visit a physician as often as they should.

“If you really break it down the people who were having suicidal thoughts weren’t going into the doctor as much. I think about the people who might be falling through the cracks. Chronic pain in and of itself is very isolating over time,” said McKernan.

“Perhaps we can connect those individuals to an outpatient provider, or providers, to improve their care and reduce their suicide risk. We also might see patients at-risk establish meaningful relationships with providers whom they can contact in times of crisis,” said senior author Colin Walsh, MD, a professor of Biomedical Informatics at Vanderbilt.

In addition to seeing a primary care provider or rheumatologist, researchers say fibromyalgia patients should be getting regular exercise and physical therapy, and working with a psychologist or mental health provider.

“We looked at thousands of people in this study and not one who received mental health services of some kind went on to attempt suicide,” McKernan said.

“Often, when you are hurting, your body tells you to stay in bed. Moving is the last thing that you want to do. And when you are tired, when your mood is low, when your body aches, you don’t want to see anybody, but that is exactly what you need to do — contact your doctors, stay in touch with them, and move. It really can make a difference.”

Back Pain Raises Risk of Mental Health Problems

By Pat Anson, Editor

Back pain is the world’s leading cause of disability, but a new international study has documented the toll it also takes on mental health.

British researchers analyzed data for nearly 200,000 people in 43 countries and found that back pain sufferers were three times more likely to be depressed and over twice as likely to experience psychosis.

“Our data shows that both back pain and chronic back pain are associated with an increased likelihood of depression, psychosis, anxiety, stress and sleep disturbances,” said Dr. Brendon Stubbs of Anglia Ruskin University.

“This suggests that back pain has important mental health implications which may make recovery from back pain more challenging. The exact reasons for this are yet to be established.”

Stubbs and his colleagues say their findings, published in the journal General Hospital Psychiatry,  were broadly similar across all 43 countries. The research team studied data from the World Health Survey from 2002 to 2004.

About 80 percent of adults worldwide experience back pain at some point in their lives. A previous study also found that about one in five low back pain patients suffer from depression.

“Further research is required to find out more about the links between these problems, and to ensure effective treatments can be developed. It is also important that healthcare professionals are made aware of this link to refer patients to other services if necessary,” said Stubbs.

Although the association between back pain and mental health problems was similar around the world, the incidence of back pain itself varied widely – from 13.7% in China’s population to 57% in Nepal and 53% in Bangladesh.

A large 2015 study in the United States linked back pain to a wide variety of other health issues, including obesity, nicotine dependence and alcohol abuse.

People with chronic lower back pain are more likely to use illicit drugs -- including marijuana, cocaine, heroin and methamphetamine -- according to a recent study published in the journal Spine.

Power of Pain: How to Boost Your Mental Health

Barby Ingle, Columnist

Let’s face it. Living with any chronic illness is very difficult. When it also involves pain, we are bound to experience changes in our personality, mood, and mental health.

It is hard to admit that we are depressed, snap at others, and take our physical pain out on them. My husband and I spend a lot of time helping others in pain. He has said to me that if I dealt with my pain like some other people do, we would never make it. 

When I first met my husband, I had just come out of a 10 year marriage to someone else. I knew what I wanted -- to figure out what my pain was and get a cure to fix it. I had no intention of dating, let alone getting remarried. 

I have a degree in social psychology and was able to keep in mind that no matter how horrible I felt, it was not the person I was with who was at fault. It wasn’t my fault either. Sometimes things are just because they are. I made a conscious effort to go above and beyond, be thankful, and to never snap at anyone helping me or choosing not to help me, as was the case with my ex-husband. 

I also realized that I needed some tools to cope with my new life. I needed professional help and guidance. Anyone facing the challenges of chronic pain will have “situational depression.” It is normal and common. Who would not be depressed after going from healthy to disabled?

Not only that, but chronic pain affects the limbic system in our brain, where mood is processed. I found that my anxiety and depression rose along with all the other things I was losing. It was very easy to snap at others around me or blame my situation on others. 

The tools I learned through cognitive behavior therapy helped get all of those feelings under control. I saw a few counselors as well as going to group counseling with others who were facing similar situations. I looked at it as an attitude tune-up to remind me of the life tools we need for our mental capacities to function to their best ability. 

Tools that I found most helpful were setting goals, getting organized, spending time outside, meditating, not to sweat the small stuff, and finding my purpose. The “Who am I?” question was where I started. One of the best exercises a counselor had me do was write down who I was. 

I had lost everything, my job, my husband, my house, and my driving privileges. I had trained my whole life to be a cheerleader. I was head coach of a division IA university and owner of a cheer/dance training company. It was my dream and it was all shattered. 

I had the hardest time starting the assignment. What I was since I could remember was a cheerleader. That was all I was, all I knew, all I wanted to be. I couldn’t go back into the counselor’s office with nothing on my paper. But I felt as if I was nothing. I had lost my purpose and doctors were telling me I would never get it back, even though they couldn’t give me a proper diagnosis. 

I called my psychologist and said, “I am failing again, I don’t know where to start, I am nothing anymore.”

He said, “Let’s start with your faith.” 

“I am Catholic,” I told him. “Okay, write that down,” he said. “What do you like most about yourself?” 

“My teeth” I replied. He said, “Write down, I have good teeth.”

I began to see where this was going. I began to look at all the things in my life that I am. 

I am more than this pain I am in. I am more than one thing. I realized that all my life, I had one goal and one dream, but I was so much more. When I was done, I ended up with 78 things on my list of who I am. 

I learned that I am not just a pain patient, I am well rounded and I am unique. We are all unique. Most importantly, I learned I was still a cheerleader. I was just going to have to change how I achieved and continued my purpose. Who I am and what my purpose is are two separate things that intertwine, but my purpose doesn’t define me. 

I encourage people who are having trouble after developing pain to write down their goals. Write down your purpose. Write down who you are. Use it as a reminder to yourself in your toughest moment that you still are! You are important. You count. You matter. 

You can accomplish your goals. The how, when, why, and who will help are yet to be determined, but you now have something to work for. 

Take on the smaller tasks first. Whatever boulder gets in your way is passable. Don’t think I have to go through this, but how can I get past this. Over, under, around, walk, bus, train, plane, there is a way. If it is too big in the moment, break it down even more. 

You don’t have to change your dreams and goals, but you have to find a new way to accomplish them that is not necessarily the easy path. We will all have personal failures, but it’s not over until you give up. That is just part of the path you are taking. 

Let go of the worry and stress of not accomplishing what you want in a specific time frame. Just getting parts done is an accomplishment in itself. No one is perfect, even the healthiest person on earth. Live for the positivity of life and for your own mental health.

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

More information about Barby can be found at her website. 

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