I Have to Drive 6 Hours for Pain Care

By Bailey Parker, Guest Columnist

I feel so alone and isolated. There have been times I wanted to die, but my 5-year old son keeps me going. I get up every day for him.

About two years after he was born, I had a car wreck. I hit a coyote at 60 mph and ripped the radiator off my car. The doctors told me I had the spine of an 80-year old and needed a double level fusion in my neck.

I was 34 then and in tremendous amounts of pain. But after reading online stories in spine health forums, I was skeptical about the surgery. Everything told me to wait. So I did, for a year. I saw three surgeons and a neurologist. They all told me to have the surgery.

I live in a small city in southwest Colorado. When it comes to opioid pain medication, all the doctors here seem to have taken the stance, “We just don’t do that here.” The nearest city is Albuquerque, New Mexico, which means a 4-hour drive for me across state lines, or a 6-hour drive to Denver over mountain passes.

Before my surgery, one of the doctors of orthopedic medicine prescribed my pain medication. For two months, I was able to work again and was beginning to get back on my feet. I remember thinking at the time that I didn’t want to take medication for the rest of my life, but the fusion sounded worse.

The third month in I called for a refill of my medication. They told me no, but wouldn’t say why or give me a follow up exam with the doctor. He was too busy and couldn’t see me for a month. I waited one excruciating month and went to see him, asking what happened.

BAILEY PARKER

He had looked at my prescription records and saw a prescription for narcotics from another doctor for when I had cystic fibroids on my ovaries. It was not the same pain medication as what he prescribed me, and I didn’t even know they were the same type of medicine.  

Even though I had a broken neck, he did not feel comfortable prescribing to me anymore. His office then took 6 months to get my medical records sent to my primary care doctor. I had to physically go in and yell at them that I was about to have major surgery. This was the first time I felt treated like an addict, but not the last.

I went to my primary care physician and explained what happened with this other doctor. We have a very good relationship. She knows all of my medical history. She handled my pain medication before my surgery but was very clear that she would not do it for an extended period.

I never take more medication than prescribed. I am not an addict. I do everything they tell me. I was walking and doing yoga every day, just as the doctors recommended. I took my vitamins and a fruit shake every day.

After the fusion surgery, things just didn’t feel right. I was in tremendous pain again and this time there was more of it in different places. I told the physician’s assistant at my surgeon’s office and he told me to just get off all the drugs. He said it would help. He told me I would be fine. I wasn’t.

I struggled for another month before I demanded to see the surgeon. He told me I would benefit from OxyContin and gave me a week’s supply. For the first time since my accident, I was able to work and properly care for my son. My depression lifted. But when I called to tell them that I was doing good on the medication, they said it was time to go back to my primary care doctor and any further medication would have to be prescribed by her.

I went to see her, but she still did not feel comfortable handling my care and referred me to a pain clinic 6 hours away. I was in despair, thinking that I had crippled myself for life and would lose my job, my son and my husband. All of these relationships were strained at this point.

The pain clinic helped me get my life back. They are compassionate and good to the people that come through their doors. It’s a common misconception that pain patients want to take medication. We don’t. We just want some of our lives back and pain medication helps us have that.

A year after my fusion, the surgeon met me again. The fusion had failed, and he wanted to do a revision that would be more painful than the first. He also told me he thought my pain might be caused by fibromyalgia. I’ve never been so angry. I have pain because of my broken neck. Pompous arrogant doctor with no aftercare.

Here is my dilemma, I’ve gotten better care in a big city, where they do not treat me like an addict. I’ve gotten my life back. At first, I was able to go there every three months to get my medication, but with the laws changing, they now say I have to go every month. Driving 6 hours both ways with a 5-year-old and a broken neck is hard. But quality of life and pain are great motivators.

My experience has left me with so much anger towards doctors in my area. It seems their Hippocratic oath has been trumped by the opioid crisis and fear of administrative action. I do not tell people about the medication that helps my quality of life for fear of judgement and stigma. Unless they have been through chronic pain, they simply don’t understand.

I wouldn’t wish this on my worst enemy.

Bailey Parker lives in Colorado.

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

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

What Back Pain Sufferers Should Know

By Doug Beall, MD, Guest Columnist

Allow me to describe a common patient referred to my office. Their back pain has been around long enough to be chronic and anti-inflammatory pills no longer dilute the pain.  Good days are when the patient is able to leave the house and painfully make it through eight hours at work; bad days are when the only endurable position is to lay flat at home all day.

Learning to live with the pain is no longer an option, so his physician refers him to my office. Let's pause the story here.

This sequence has been the experience of countless patients suffering from back pain. After months — sometimes years — of what feels like a 10 on the pain scale, these patients are willing to do almost anything to make the pain go away.

By the time they come to the doctor, most have done their research and have already written their own prescription, concluding that invasive surgeries and painkillers are the only options strong enough to alleviate their pain. But how did we get to the point where the all-out attack option seems like the only option?

As a doctor who specializes in treating patients for back pain, here’s what I wish more patients suffering from chronic pain knew.

When it comes to strong painkillers and increasingly invasive surgeries, bigger is not better. While surgery is the right option for some, the culture of pain management in the United States has produced the myth that the more invasive and aggressive the technique, the more effective it is. This over-reliance on aggressive techniques, especially opioids and invasive surgeries, puts last resorts at the front of the line while ignoring a range of safer and frequently more effective treatments — injections, vertebral augmentation, stem cell therapy or radiofrequency ablation, to name a few.

Simply put, the more aggressive and invasive techniques have not demonstrated that they produce better results. People aren’t automobiles. Our bodies can’t be put back together quickly or without some downside from surgery. While the more invasive repair may be better for your car, when it comes to people, the less invasive the technique, the better the patient recovery will be.

The primary consequence of the bigger is better mentally has produced a dangerous dependence on opioids for treating non-cancer pain and post-surgical pain. Opioids may be necessary for a relatively comfortable recovery after surgery, but normally not for more than four to six weeks. Recent research published in the Journal of the American Medical Association (JAMA) estimates that six percent of patients prescribed opioids after surgery become persistent opioid users. Chronic opioid use has ruined countless lives, so any treatment relying on opioids should only be considered a last resort.

Furthermore, it’s not clear that invasive surgeries are effective for patients. As an example, one of the most common pain management procedures is lumbar spinal fusion surgery, which is often used to treat chronic lower back pain. A new study from the medical journal Spine indicates 20 percent of patients undergo another operation within four years of an initial spinal fusion. Patients can only hope they’re not the unlucky one out of five sitting in the doctor’s waiting room who will be back for a second operation.

Pain sufferers should know that the vast majority of their chronic pain could be helped with simple, less invasive procedures without having to make an incision. When patients are referred to my office, I start with the least invasive options before moving on to surgery and more definitive techniques.

Instead of having patients go under the knife and prescribing them opioids, many of my patients suffering from chronic lower back pain have experienced tremendous results with radiofrequency ablation, which uses radiofrequency energy to deactivate a nerve that transmits pain from a patient’s lumbar disc.  This procedure can be done with a needle during an outpatient visit, and it often provides instant relief that can last for years.

Other procedures include epidural steroid injections (ESIs) and vertebral augmentation surgery. Both are minimally invasive options that help relieve acute and chronic pain.

Epidural injections relieve a variety of conditions, including sciatica, herniated discs and spinal stenosis. During an ESI, a surgeon or interventional pain physician injects a local anesthetic and a steroid into the epidural space, providing swift pain relief for the region. While this relief only lasts for a few weeks or months, it provides patients with enough time to continue working on their physical therapy and for the underlying pathology to heal.

Vertebral augmentation is an injection of a cementing agent into a vertebra in order to stabilize a vertical compression fracture (VCF). VCFs can result in severe deformity and extreme pain, and vertebral augmentation can help fix this injury with minimal complication or risk.

For patients suffering the disabling effects of chronic back pain, it’s important to know there are alternatives to opioids and invasive surgeries; not only radiofrequency ablation, but a whole range of minimally-invasive techniques. In the end, surgery may be necessary — but for many, these other options will prove to be not only safer, but also more effective.

(Editor’s note: For another view on ESI’s and their risks, see Dr. Margaret Aranda’s column, “5 Things to Know About Epidural Steroid Injections.”)

Dr. Doug Beall is a Fellow of Interventional Pain Practice, a Diplomate of the American Academy of Pain Management and is the Chief of Services at Clinical Radiology of Oklahoma, specializing in interventional musculoskeletal care.

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

Why Are They Being So Cruel?

By Debbie Duke, Guest Columnist

I am 63 years old and have been on pain meds consistently since the age of 38.  I have systemic lupus and scleroderma, which fortunately is in remission.  I also suffer from gout, fibromuscular dysplasia, scoliosis, kidney pain and post-operative pain from breast cancer surgery.

My experience with pain management doctors in the beginning was very pleasant and I was getting relief from my agony. I was disabled but still functional due to pain medication. 

But recently things have changed.  After several years of using a pain pump, I decided to go back to oral medication to have more control.  The pump was not that effective for breakthrough pain and made me feel disconnected. After giving up on the pump, I changed doctors and the new one gave me the medication I had been before.

On my last visit, he said a new law requires patients on pain meds to have no more than the equivalency of 90mg of morphine.  Then he cut my dose in half.  I am now in agony and can see why people would turn to other ways of getting relief or decide to end it all. 

I love life and have many reasons to live. I care for a grandchild who had nearly been lost to foster care. Now, due to my inability to get around very well, I may not be able to continue taking care of her. 

DEBBIE DUKE

I can't bear to think of it. 

Why are they being so cruel to those of us who are law abiding, while the crooks get away with it?  When someone grabs grandma's meds from her purse or medicine cabinet, why is that grandma’s fault? 

Overdoses have been around for years and years. Who did we blame?  The one who stuck the needle in their arm, that's who.  Yes, we have a drug epidemic, but do something about the drugs coming across our borders. There has been enough squeezing of patients. Give them what works for them.  It sickens me to see patients treated unjustly turning to other ways to help themselves.

I'm truly afraid that everything in my life as I know it will end.  Thanks to irrational politicians who have taken away our right to be as free of pain as possible.

I think sometimes about what will be said in the future.  We'll be saying, “Remember the days when we were able to have pain relief and no one had to suffer?”

I know that people are dying, but to equate prescriptions with illegal drugs to make some political point is wrong. I wish those that are in pain could march down Pennsylvania Avenue. But we are too sick for that. 

Debbie Duke lives in Florida.

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

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

The Hidden Costs of Patient Advocacy

By Barby Ingle, PNN Columnist

I have been advocating for chronic pain patients and the pain community since 2006. I started advocating because my chronic pain journey was long and hard, yet my story was by no means original. What happened to me was happening to far too many others. We were being ignored by the medical system and had lost our voices. 

I decided that it was time to get my voice back. 

I first started advocating for myself with my own providers, then started going to doctor’s appointments with other patients, followed by peer-to-peer mentoring of other patients and attending health events. Within a few years I was being asked to be the patient representative at many conferences. 

I didn’t start using social media until 2009. Doing so opened up a whole new set of ways to advocate. I began connecting with people all over the United States and the world. In 2010, I was invited to testify at a Defense Department hearing in Washington, DC and also at the Arizona legislature. 

I had patients attack me on social media for not being sick enough. Well, they haven’t seen me at my worst! What they saw was the branding and marketing image of me, which puts an emphasis on positivity. 

I recently watched an argument on social media over how much advocacy costs. There were two sides to the argument. On one side were those who think advocacy should be free and that it costs nothing. The other side was saying that money is needed to fund advocacy work and that people should donate to pain organizations who do it for them. 

If you asked me during my first 5 years of advocacy, I would have said it is free to be an advocate. But over the past 7 years I’ve learned that there are many hidden costs outside of the time you volunteer. 

As an advocate who makes phone calls, your monthly phone bill would be a minimum of $25 for each phone line per month, plus another $20 for unlimited long distance. For online advocacy, internet service fees would be about $45 monthly. That’s not counting the cost of a computer, printer, telephone, office space, supplies, newsletters, etc.

Whether you are going for in-person advocacy or mailing letters, you need to take the time to research the issues and work on prep materials. That may take 10 to 20 hours per issue. If you are lucky enough to be paid for your time ($15/hour is the proposed national minimum wage), that would be a minimum salary of $150. 

Traveling to your state capital could cost a tank of gas, plus your time. That is not much. But to go to meetings in Washington, DC – as dozens of advocates recently did to attend an FDA hearing -- you will need to pay for your flight, hotel, meals and ground transportation.  

When someone like myself is paying for most of these costs privately, it adds up to tens of thousands of dollars a year. Can you do it for less? Yes, but then you are getting less out of your advocacy work and it is going to be harder to make a difference. 

We do need individual patients to write letters, make phone calls and call for change. But to say that there is no cost involved is really not accurate at all. There are many other costs, like writing social media content, pamphlets, resource materials, business cards, etc. that should be taken into consideration.

Just recently Don't Punish Pain rallies were held across the country. The campaign is said to have begun with one woman and a stack of index cards, but that doesn’t factor in all the other costs of signs, banners, telephone calls, and posting on social media, or the hundreds of people who volunteered their time to organize and attend the rallies. 

Advocacy costs at all levels. Recently I heard from a patient who was on workers compensation, who lost her provider and medical care because she was so involved in advocacy they thought she had a job. 

There are millions of dollars involved in advocacy and the work takes time, effort, heart and care. Please know that I am glad for all advocates and the help that comes from any efforts they make. We are not thanked a lot. 

I send out big thank you notes to everyone who has sent an email, made a phone call, testified in person, attended a doctor’s appointment with another patient, and made a difference for even one other person. Whether you are paid for your advocacy work or not, it has value and it does at minimum cost us energy pennies! 

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.

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

Living with a Beast

By Cathy Kean, Guest Columnist

I am living with a beast who is cold, heartless, unmerciful, uncaring and cruel. Always lurking around me, making my life so challenging, so exhausting, and so painful. Not only physically, but mentally, spiritually and emotionally.  

This beast has taken so much from me, I hardly remember how it was before it came into my life. Of course, I had challenges and difficult times. But I was functional and happy. And I could cope! I could manage! 

Now I have had to deal with this evil and vindictive beast.  I live day in and day out in my cave (my bedroom), lying in bed. I rarely venture out anymore.  I've become isolated and alone; so different from the life I used to live. 

I wish that I had swallowed and drunk up and absorbed the greatness and beauty of the life I had before, and not taken it for granted. What I wouldn't do or give to go back to that time! 

I mourn me. I miss me. I know my kids and my grandchildren miss me. The woman I used to be was energetic, vivacious, outgoing, industrious, loving and friendly. There wasn't a person that could walk by me without me engaging in some kind of banter.  I loved life so much more then!

Now I am attacked when I least expect it. I have no way of knowing how or when, because the beast is always present, always lurking around. It has hurt my family, my career, my outlook and my sense of self. I am followed everywhere.

When the beast is angry, my days are hell and my nights sleepless. It is behind me, beside me, everywhere, every day.  I truly cannot remember a time that I lived totally out of its grasp.

This fiend’s name is PAIN.

Pain is brutal, savage and barbaric at times. Pain cares little for family occasions, social events or holidays. Pain forces me to stay home, ensuring I don’t forget its brute presence for a second. The beast has been a silent witness to some of the most extraordinary and excruciatingly painful moments of my life.

There are so many who live with this insidious beast, just like I do. We do our best to keep on living, despite pain's germinating presence. You never become immune to the torturous, aching, stabbing, aching and suffering that pain brings, regardless of how long you live with it.

I am trying to learn that this is my new normal and I must continue with my life. I try to smile, laugh and engage, despite the struggle, strain and toil it causes. But I feel like I have been robbed!

I need to tell those who do not have chronic pain a little secret.

It hurts all day, every day, 24/7.

365 days a year.

It never stops.

It never ends.

You eat, it hurts.

You sleep, it hurts.

You just exist, it hurts.

You rest, it hurts.

You breathe, it hurts.

Every single aspect of every single day, it hurts.

And now without my essential tools (my medications) that gave me functionality, my quality of life has diminished 98% due to CDC guidelines. I truly don't know how much longer I can stay in this fight, this madness, this torment and this torture.

Constant and chronic pain isn’t something you can deal with for a long period of time. My organs are starting to shut down. I am blacking out constantly. I am having cardiac issues. I am in so much pain, I pray to God to take me!

I have begged my adult children to please not be angry with me if I take my life. I want to be here! I want to see my grandbabies grow up. I want to engage in life again!

I made a difference in peoples’ lives. I used to be a parent's last hope for true help and success when I had access to my medications. I was a special education advocate and I was good! I knew those feelings of desperation, not knowing where to turn or what to do for your child.

I just wish the government, our families, friends, and society would see us as human beings with value. Please be more compassionate, more loving and more accepting of our limitations.

No one would ask or want to live with this beast, this madness! I promise you!

Cathy Kean lives in California. She is a grandmother of 7 and mother of 4, who has chronic pain from lupus, fibromyalgia, Parkinson's disease, and stiff person syndrome. Cathy is a proud member of the Facebook group Chronic Illness Awareness and Advocacy Coalition.

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

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

6 Emotional Stages of Chronic Pain

By Ann Marie Gaudon, PNN Columnist

Emotions are part of our life experience and influence how we cope with challenging situations such as chronic pain.

Emotional responses to pain are not “bad” or “negative” because they are a natural response to life events. For example, depression is often seen as a sign of poor health, but it can also be a way of conserving bodily energy.

Emotions are never a sign of weakness. Emotions are adaptive responses which have helped us survive as a species.

Did you know there are normal emotional stages of injury and pain? Not everyone goes through every stage and it is not a linear process. Sometimes we bounce from stage to stage in no particular order.

Let’s look at these 6 emotional stages of chronic pain:

Denial

Denial is when we refuse to acknowledge how we feel and try to conceal the problem. When we’re in this stage our thoughts are likely: “It’s probably nothing serious” or “It will pass soon enough.”

Typical denial behaviour would be to ignore the pain, keep going as though you’re not in pain, failure to seek medical attention, and not following medical advice. Basically, you’re acting like nothing is going on in your body.

Denial is also culturally reinforced by beliefs that we should “suck it up, don’t complain and keep working.”

Fear and Anxiety

We feel fear and anxiety when the reality of something wrong hits home. You will likely be thinking quite repetitively during this stage. Typical thoughts would be: “Something is very wrong” or “What’s going to happen to me?” 

In this stage, your behaviour might be to rest and withdraw or avoid activities to protect yourself from further injury or pain. You will find yourself preoccupied with a lot of worry. You will likely begin to scan your environment and your body for threats to either, and it will be hard to commit to work or play.

Depression

Depression is the most common response to chronic pain and tends to come after fear and anxiety. Your thoughts would be normal in this stage if they were: “What’s the use?” or “Why bother with anything anymore?”

Realize none of this is enjoyable or desired; it is a normal response to chronic pain. Your behaviour would be to reduce participation in normal physical activities – even the enjoyable ones.  Social withdrawal would continue as a protective adaptation and you might experience problems with sleep.

Depression can impair your sense of self and you may grieve the loss of your identity. If you’re not an employee and parent anymore, then who are you? It is normal to withdraw in depression when your world shrinks in size.

Anger

Another emotional stage, and one I am quite familiar with, is anger. This defensive behaviour is the “fight” in the fight-flight-freeze response. It energizes you to resist the problems that come with chronic pain, and to ward off danger and restore safety. Normal angry thoughts about your pain would be: “It’s not fair” or “Why me?”

Behaviours in this stage can sometimes be troublesome, as they may become impulsive (acting or speaking quickly without thinking it through) or compulsive (repetitive behaviour not serving a purpose). You may overreact to smaller things and blow up at others. You might also engage in risky behaviour such as abusing alcohol or other substances to try to numb yourself.

The key is to express your anger in a healthy manner and hopefully transform it into affirmative action.  This is where you find the message in your anger and put it to work for you. I put my anger to work for me as I advocate for chronic pain patients on a regular basis.

Shame

Shame is not to be confused with guilt. Guilt says, “I’ve done something bad” while shame says, “I am bad.” Shame comes from how we see ourselves as damaged goods and can lead to feelings of self-loathing and disgust. You might think: “I’m worthless” or “I’m a complete failure.”

As a therapist, I find this to be a particularly powerful and difficult stage for clients, as shame often takes up all the space in the room. Behaviours in this stage would be continued social withdrawal, a decrease in assertiveness and self-confidence, and possibly self-destructive behaviours such as abusing alcohol or drugs.

Acceptance

The final emotional stage of coping with chronic pain is acceptance. Some patients reach this stage fairly quickly and others never reach it.

Let me be crystal clear about acceptance: It does not mean that you want this pain or that you like this pain and gladly accept it. Absolutely not. What it does mean is that you accept yourself without judgment, you live in the present moment, and you accept what is. Your thoughts will be along these lines: “This is not my fault” or “I can and will cope with this.”

Behaviours begin to change in this stage. You will be less focused on the past and have more realistic expectations of yourself. You will maintain appropriate levels of physical activity, use medications appropriately, reduce your emotional stress, and begin to experience feelings of peace rather than constantly beating yourself up.

Acceptance does not mean that you no longer feel any of the other emotions.  You may still experience feelings of denial, fear and anxiety, depression, anger and shame, but they will be less often and with less intensity.

Acceptance -- which includes hefty doses of self-compassion -- does not cure anyone’s physical pain, but it does facilitate better coping and reduced emotional stress. You do not accept pain because you want it or like it, but because it is here, you have it, and you respond to it in a kinder, gentler way.

The purpose of acceptance is to engage in activities that you feel have value. Within this purpose, acceptance becomes relevant and necessary. As a consequence, there is often less time spent struggling against and trying to avoid pain -- time freed up to engage in more valued pursuits.

It may take some time and support to acquire this tool, but once you have, it’s yours for life. Double entendre fully intended.

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 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

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

Betrayed by My Doctors and My Government

By Jeff Watt, Guest Columnist

I was a nurse and that career gave my life purpose.  I felt like I was making a difference in my patients’ lives.  However, in October of 2014, the healthcare system that employed me destroyed me.

I was experiencing stiffness in my neck and had some red spots on my legs.  I also had a fever that broke the night before.  That was it. 

Unfortunately, because I went to the ER to figure out what was going on, they decided to do a spinal tap.  The physician attempted 3 times and failed, so another provider was called in, who did another two attempts before finally placing the needle. 

JEFF WATT

The next day, I got the most agonizing headache of my life.  When I went back to the ER, they found the reason was a spinal fluid leak caused by all the failed attempts to collect spinal fluid.

The treatment for spinal headaches is to do an epidural blood patch, which includes another spinal puncture.  The first blood patch was placed in the wrong place, so the headache returned.  It took a second blood patch, and then ANOTHER spinal puncture to have it placed correctly and to make the headache go away.

Shortly after, I started experiencing sharp shooting pains down my right leg, causing extreme constant pain and causing me to collapse, unable to bear my own weight. 

I returned to the ER and they sent me to see a neurologist, who did an MRI and a number of other tests, in the end diagnosing me with a condition called arachnoiditis.  This is a progressive disease caused by scar tissue in the arachnoid space of the spinal cord clumping together and pinching the nerves, 24/7.  Arachnoiditis is progressive, a condition that only worsens and is incurable.  It has been described as pain as bad as that of cancer, but without the release of death.

Over the last 3 years since my injury, I have lost my job, friendships, and the ability to do sports and activities with my wife.  I have experienced increased shooting pains and weakness in my right leg, loss of bladder and bowel function causing me to wear adult briefs, balance issues, sexual dysfunction issues, and the list goes on.

Numerous specialists couldn’t provide a treatment to alleviate my pain.  I tried medication after medication with the same result -- until I was prescribed extended relief morphine and oxycodone.  These medications controlled my pain enough that I was able to get out to do events, to help out at home doing laundry and dishes, and gave me back a quality of life that I didn’t have.

In the last 6 months, I have been forced to completely taper off of these medications because of a set of guidelines released by the CDC. 

The so-called opioid “epidemic” has made persistent pain patients like myself collateral damage in the government’s attempts to stop deaths from overdosing.  The CDC even admitted it mistakenly included legal prescription opioids in the same data as overdoses caused by illicit fentanyl from China and other synthetic opioids.

I now spend my days in severe unrelenting pain.  Alternative medications prescribed by my doctor have done nothing.  I feel as though I have been abandoned and betrayed by my doctors, and my government.  My doctor is supposed to help and do no harm, and my government is supposed to do what is in the best interest of the people they represent, including patients who are dependent on opioids to give them a quality of life.

If the government is truly concerned about people’s deaths, perhaps it should look into the increase in suicides by patients who suffer from persistent pain.  We deserve effective and compassionate treatment of our pain.

Jeff Watt lives in Oregon.

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

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

A Pained Life: Being Your Own Advocate

By Carol Levy, PNN Columnist

I was reading an article about a woman with cancer.  She tells how harrowing a journey it has been and all she has been through.

To help herself and her doctors, she carries to each appointment a thick medical file with all her information: doctors notes, tests results, surgeries, treatments, procedures, medications and the outcomes of them all.

“Doctors see this and they respect me,” she says. “I've learned that you have to be super organized. You have to be your own advocate.”

Good for her.

When I see a new doctor, I hand the nurse or doctor a two page printout that details my medical history. It includes all of the illnesses and procedures I have had that warrant noting (using their correct medical names), outcomes for the surgeries related to my trigeminal neuralgia, and all the medications I have tried.

I am at a new doctors' office. The nurse comes out to greet me and I hand her my printout. She takes a quick look. “Who wrote this for you?” she asks.

“I did.” Who else would have written it?

She gives me a look that says, “Yeah sure.”

I recently saw a new pain specialist. He is a psychiatrist by training, but mainly sees patients to treat their pain, not as a therapist.

During our conversation I remark, “I think the pain is oculomotor,” referring to the third cranial nerve. I never think twice about using correct medical and anatomical terms when talking with a medical person. It gives us a common language.

And yet many doctors don't seem to like it. They ask, almost confrontationally: “Why do you talk like that?”

The psychiatrist’s training (I assume) made him more circumspect. “What is your background?” he asked. “You are very familiar with medical terminology and use it easily.”

He was the first doctor to ever ask it in that manner, the only one to ask anything about my background.

Had they asked, as he did, they would have learned I worked in hospitals for years as a candy striper and ER ward clerk. In those days I had pretensions towards medical school. The hospital where I worked was a teaching hospital and many of the residents loved to teach me, even allowing me to observe surgery. It would have been hard not to pick up the lingo.

So what is the difference? Why do doctors and nurses warmly welcome the information the cancer patient tenders via her thick file, while I am looked at askance?

And it is not just me. Time and again I hear from other pain patients or read in online support groups that a doctor or nurse wanted to know why a patient knew so much about their disorder and why they can speak intelligently about it.

I know why.  I think most of us do.  Because we are not children. We want to be seen and heard, to be partners in our medical care. We need to help the medical community understand: Ignorance is not bliss. And knowledge doesn't make us suspect.

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.

Remembering Pain Warrior Sherri Little

By Tina Petrova, Guest Columnist

July 7, 2018 marks the third anniversary of the death of Sherri Little, a California pain patient, warrior, advocate and my friend.

Sherri was a pretty, diminutive woman with sparkling eyes who was full of life, verve and laughter -- until multiple chronic pain conditions claimed her emaciated body and tired spirit at the age of 53.

Sherri committed suicide in a Los Angeles hotel room after a last desperate attempt to get medical treatment for her severe colitis pain (See “Sherri’s Story: A Final Plea for Help”).

I would like to say that insurers, hospitals and medical professionals have evolved in their capacity to diagnose and treat chronic pain and illness since Sherri’s death. Sadly, that is not the case.

Since Sherri’s passing and the slow death of compassion in pain medicine in North America, many others have succumbed to the ravages of chronic pain. Some by failure to be helped, some by their own hand.

When will this madness end? When will doctors stop being persecuted for upholding their Hippocratic Oath by offering patients some small dignity and reduced suffering?

SHERRI LITTLE

When will pain patients gain access to the alternative health modalities that their doctors recommend? When will insurers start to pay for them and governments mandate their coverage?

Pain Warriors

As a longtime pain patient and activist, I was moved to do something for Sherri, myself and others who live in pain. After 3 long years of developing a documentary on chronic pain that was to be called "Pandemic of Denial,” I partnered with award winning filmmaker Eugene Weis.

VISIONARY MEDIA

Together, we have synthesized hundreds of hours of research, production, interviews and footage -- molding our project into a compelling, heartbreaking and status-quo shattering feature film.

The newly renamed documentary “Pain Warriors” is dedicated to Sherri and all those we've lost to pain over the last three years. We are at long last nearing the finish line and anticipate a Fall 2018 release of the film.

Pain Warriors will be distributed by Indie Can Entertainment and we hope it will be available on many platforms of exhibition, including streaming channels, film festivals, cable TV and community screenings.

No one was able to stop Sherri’s tragic ending to the disease of chronic pain. We must now look to the future with commitment, focus and clarity, and renew our ambitions to educate and inform the global community about this seemingly benign illness.  Poorly treated pain and medical neglect are not often discussed in the media, yet they have torn apart many families, shattering lives and communities in their wake.

If your group, organization or support circle would like to sponsor a community screening of Pain Warriors in your city or you simply wish to be notified of future screenings in your area, please email us at: painwarriorsmovie@gmail.com. We will get back to everyone on the screening list by email this fall.

Please visit our website for details on the film. You can also follow us on Facebook by clicking here. And you can learn more about Sherri here.  Help us help you Give Pain A Voice!

Tina Petrova is an award-winning filmmaker and co-founder of Chronic Pain TV and Give Pain A Voice.  Her production company, Visionary Media, is the Executive Producer of Pain Warriors.

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

Doctor, Please Sign My Pain Agreement

By Jennifer Hochgesang, Guest Columnist

Doctor, I have a pain condition. It cannot be measured or quantified. You have to rely on me - the person living in my body every day for my entire life - as an indicator of how I am doing and how the treatments and medications are working. I may not respond in ways you think I should.

If it was simply blood pressure, you could take it and judge where I am on your own. Unfortunately for both of us, my condition is not that simple. A rapid pulse and high blood pressure is an indication for me that I am in a lot of pain.

I am used to being in pain all day long every day. I have a good mask and I'm especially quiet when in pain. Please, write that down. I am gabbing a lot and feeling okay today, but when I am in great pain – I will be very, very quiet and still. I may even force a smile.

We are tricky creatures, chronic pain patients, and it takes time to understand us individually. You did not pick an easy job.

Do you see where I am going with this? Yes, we need to create a bond. I will share the signs of my body with you. Will you promise to listen? I would like that very much.

At the very least, let’s agree on my pain levels. When you ask me for a number, that number should mean the same thing to both of us. These numbers are very subjective, so let me help you.

A number 3 means that I feel discomfort, but I can get on with my day and even preoccupy myself with other things. A number 7 means I am barely able to talk because that is a trigger for my facial pain from trigeminal neuralgia. When that happens, I use sign language to communicate with my daughter.

If I give a number 10, I will be in the ER and will need the doctors there to listen to me because I know the only medication that will stop the flare. I have only reached 10 three times in my life, so you will need to know what it means when I have it. I won’t be able to talk. I’ve found that IV Dilantin is the best thing for my worst flares, but I’ve had doctors unwilling to give it.

If I’m at number 11, I will be unconscious and talking to a dream doctor so I will trust you have that part covered.

Like I said, you did not pick an easy job. But, neither did I. Please don’t forget that I did not choose this. Our appointments go by so quickly and sometimes there’s isn’t enough time to ask questions. I need a little extra time to talk about side effects or a possible procedure. Can we make sure that’s possible?

You will need to get to know me. I have trigeminal neuralgia and multiple sclerosis. I am a mother with a beautiful, wonderful, kind, smart and silly 7-year old daughter.

I am disabled by pain 24/7, but want to work with you to change that so I can care for my daughter and play with her; so I can call my friends and clean my basement; so I can do my four-month old bills; and wake up and actually smile genuinely and fearlessly one day.

I promise I will sign your pain contract and follow it faithfully, but you need to sign mine as well.

Jennifer Hochgesang lives in Illinois. Jennifer proudly supports myMSteam, an online social network for people living with multiple sclerosis, and Living With Facial Pain, an online support group for people living with facial pain.

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

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

I Am Not an Addict or a Criminal

By Emily Blankenship, Guest Columnist

I was healthy and rarely even took an aspirin until a bad car accident when I was 33 years old. I am now 60.

I have not had one day or moment without pain since the accident, but I’ve had many different doctors. All of them told me they will not prescribe pain meds strong enough to remove the pain completely. They would only give me something to lessen the pain so that I could function.

But I can't function! 

My life since the car accident has been one of horrible physical and emotional pain, lots of doctor visits, depression, and lots of pills. I now have fibromyalgia, diabetes, arthritis, and a long list of other medical conditions. I take 20 different pills and get 2 injections daily. 

I have been practically on my knees, crying and begging doctors for pain relief. I’ve also been in a hospital psych ward 5 or 6 times because I was suicidal. The doctors would still not help me.

They tell me to lose weight, walk for exercise, move more, try yoga, meditate, etc.  All of that is hard to do when you are in so much pain you can't get out of bed! 

I lost my regular life after the accident. Friends disappeared. I could not work. I can no longer do activities that I loved, like bowling, cross stitching and photography, because my hands shake too bad. I am isolated and depressed.

EMILY BLANKENSHIP

My current doctor recently cut down my pain meds from 6 pills a day down to 3 pills. And now I must have my blood drawn for drug tests before the doctor will write a prescription for a refill. Crazy!  I am NOT an addict and NOT a criminal. I just want relief.

My doctor will only write pain med prescriptions for a 28-day supply, even though there are 30 or 31 days in a month. I run out of pain pills the last week of every month. No one should have to live this way. I am also required to have a doctor’s appointment every 2 months to talk about my pain before he will renew my prescriptions.

My experiences have led me to believe that the doctors do not believe chronic pain patients when we tell them we are in pain. Winter is the worst time for me. My pain levels are generally 8 or 9 in winter, even when I’m on pain meds. Summer is my best time, the pain levels can drop to a 3 or 4.

Yet even if I log all my daily pain levels and show it to my doctors, they act like I was just having a bad day.  One doctor actually said that to my face! 

My last three doctors made me sign a pain contract stating that if I ever go to another doctor and try to get pain meds that I will be dropped as a patient.  Scary thought. I have never done anything like that and have no intention of doing that, but the fact I had to sign a contract made me feel like a criminal or an addict.

I am in control of my actions. I am not an addict who will do anything for pills.

Emily Blankenship lives in Oregon.

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

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

OxyContin, Heroin and the Opioid Crisis

By Roger Chriss, PNN Columnist

The roles of heroin and OxyContin in the opioid crisis are frequently mischaracterized and misunderstood. Such is the case with a recent op/ed in The Washington Post.

“In the 1990s, when the industry began aggressively marketing prescription opioids such as OxyContin, heroin was a minimal presence in American life," wrote Keith Humphreys, PhD, a professor of psychiatry at Stanford University

This is an unfortunate and common error about the role of heroin in the opioid crisis. Humphreys is repeating what many politicians and policymakers have also claimed. It’s important to correct this error because otherwise we will misunderstand how to treat heroin addiction, what our options are for pain management, and how to create sound policies to address the opioid crisis.

In fact, the U.S. has long had a major problem with heroin. Mexican black tar heroin arrived decades before OxyContin, and opioid addiction is usually a result of recreational use starting during adolescence, with addiction due to medical care being uncommon.

According to the book “Dark Paradise” by historian David Courtwright, researchers estimated the number of heroin addicts in the U.S. during the 1990s at a half million or more, about the same level as in the mid-1970s. This is also close to the 626,000 heroin addicts that the National Institute of Drug Abuse estimates for 2016.

Fatal overdoses involving Mexican black tar heroin were increasing even before OxyContin was introduced by Purdue Pharma in 1996. Sam Quinones notes in “Dreamland” that Oregon’s Multnomah County had only 10 heroin overdose deaths in 1991, about the time Mexican drug dealers arrived in Portland, but by 1999 there were 111 heroin overdoses.

So the idea that “heroin was a minimal presence in American life” isn’t supported by data. Neither is the claim that heroin traffickers “set up shop in the areas of the United States with the highest prevalence of prescription opioid addiction.”

According to Quinones, the Mexican drug gang the “Xalisco Boys” went into communities that were not a part of the established drug trade and were not subject to turf wars or other forms of gang violence. They wanted to fly below the radar, to avoid detection by law enforcement, and deliberately avoided carrying guns, driving fancy cars, or living large.
So the Xalisco Boys went to smaller cities like Portland and rural communities like Appalachia that were specifically chosen because they were low risk. And they were there well before 1996 and the advent of OxyContin.

Humphreys makes an additional error with his claim that about 80 percent of Americans who became heroin addicts started out with prescription opioids, according to an assessment from the National Institutes of Health. The 80% statistic varies significantly with time and place. As I wrote in a previous column,  non-medical use of opioid medication was found in 50% of young adult heroin users in Ohio, in 86% of heroin users in New York and Los Angeles, and in 40%, 39%, and 70% of heroin users in San Diego, Seattle, and New York respectively.

It's also important to note that “prescription opioids” does not necessarily mean prescribed opioids. Many addicts don't have a prescription and steal, buy or borrow pain medication. The National Institute on Drug Abuse estimates that about 10 percent of patients legally prescribed opioids develop an opioid use disorder. And only about 5 percent of those who misuse their medication transition to heroin.

There is also a disturbing new trend in heroin use. A study in JAMA Psychiatry last year found that about one-third of heroin users had no prior experience with any opioid, prescription or otherwise. Heroin users often have extensive prior drug use with a variety of different substances, along with a history of severe childhood trauma or mental illness.

Humphreys’ claim that the “heroin-addicted were transfers from prescription opioids” ignores another route on the path to opioid addiction. In “Drug Dealer, MD,” Stanford psychiatrist Anna Lembke says some drug addicts switched from heroin to prescription opioids in the late 1990s and early 2000s because of the increased availability of the latter.

None of this is meant to exonerate OxyContin or Purdue Pharma. Barry Meier’s recent book “Pain Killer” does a good job of explaining the history of the company and why it is the focus of so many lawsuits. Purdue was fined over $600 million for the illegal marketing of OxyContin and important questions about the company’s actions remain to be answered.

Heroin addiction has been a major presence in American life for generations. The current opioid crisis may have been jump-started with prescription drugs, but heroin came long before OxyContin. It is better to view OxyContin as gasoline tossed on a smoldering fire, rather than blame OxyContin for heroin. The crisis is more complicated and pervasive than that.

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

Opioid Medication Made My Chronic Pain Worse

By Robert Gripp, Guest Columnist

After 18 years of largely untreatable chronic pain, I found myself with an intrathecal pain pump delivering huge quantities of fentanyl to my spine every day. And I was still in debilitating pain.

I was on my second pain pump (they have to be replaced about every seven years) when the pump began to act up and I started into withdrawal. I immediately saw my new doctor, who had taken over my care when my original doctor retired at age 75.

He had the pump manufacturer’s representative there to help figure out what was going on. It turned out the pump was unreliable, and the doctor recommended it be powered off. I was sent home with minimal meds to detox.

Detox was the absolute most horrible experience I have ever encountered, but at the end I was virtually pain free. The reason was that I had developed opioid-induced hyperalgesia (OIH), which increased my sensitivity to pain.

ROBERT GRIPP

OIH is a well-documented syndrome, but my doctors had missed the hallmark signs of it, which are changes in the location and characteristics of your pain, as well as little or no relief from pain when the dosage is increased.

I am now 63 years old and have a new life. I have some pain, but nothing that is not well controlled with little or no opioids.

I do not believe that all patients who take high doses of opioids experience hyperalgesia, nor does the literature support any such conclusion. My purpose is to caution anyone on high doses for an extended period. If it is not helping you or your pain is worse after increasing the dosage, you should be aware of this condition and its potential.

Overzealous lawmakers and over-reaching insurance companies who want to limit opioids due to the addiction crisis don’t have a clue. Limiting opioids is making it harder for pain patients who really need them. But my experience is also something that needs to be better understood and the condition of hyperalgesia needs to be more publicized.

Our tendency is to believe more pain medicine is better when our pain worsens. I have to wonder how many people are out there in tremendous pain being caused by the very medicine given them to abate it. I am afraid it is way too many.

I hope my story helps someone get a new life, without having to stumble onto it as I did.

Robert Gripp lives in Texas.

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

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

Doctors Won’t Treat My Chronic Pain

By Leanne Gooch, Guest Columnist

I have never been addicted to anything.

I feel the need to preface any conversation about my chronic pain with that statement. I have degeneration in my neck, arthritis, spinal stenosis, failed back surgery syndrome, and some other names that have been thrown into my medical charts. 

A layperson without chronic pain would wonder why I feel the need to document every boring detail of my health history. It’s because I’ve had to explain every minute detail to each and every provider I’ve seen. For 20 years!  

Initially, when my pain started, I had a good primary care doctor who tried hard to find and treat the cause. He prescribed pain medications and sent me to many specialists. But after injections, physical therapy, rehabilitation, etc., he became the first in a long line of doctors who would not treat me as a pain patient. 

I wasn’t considered “chronic” until the 10th year. I learned during that time that women are viewed by the medical profession as weak for reporting their pain. I have seen the faces of both men (doctors) and women (nurses) who judged my pain story as being overly dramatic and embellished.  

I was eventually sent to a hotshot, top-of-his-game neurosurgeon. He said I had degeneration in my spine that they would normally see in elderly patients, 60 or 70 years of age. I was told a surgery would fix me all up. They would cut, put some donor bone in, some screws to hold it all together, and that constant aching pain would be gone!

I signed on the dotted line. I was only 25 years old. Of course, now we know those surgeries are a very bad idea, especially for someone so young, because even if they’re effective in the short term, all that hardware eventually leads to further degeneration with age. 

I had a spinal fusion, was patted on the head and sent my way. In follow-up exams with the surgeon, I was told everything was perfect and that my pain would subside when I healed. “Go live your life,” he said.

LEANNE GOOCH

Yeah, not so much. I spent the next four years in even more pain and was dismissed by no less than six doctors, who claimed that because my x-rays showed everything was fine, I must be fine. I didn’t need further treatment. I didn’t need pain medication. There’s no way I could be in the pain I claimed to be in. 

Eventually, I got in with another hotshot surgeon, but this time it was at a hotshot hospital! They finally unearthed the fact that my fusion never did fuse. I had another surgery, but there were complications. They said my body rejected the donor bone. The bone would have to come from me, from my hip. They would need to cut the front and back of my neck, and my hip. They’d also put in more screws, metal plates and a metal bracket. 

The second surgery was not successful in ridding me of any pain. 

I was back on the merry-go-round of trying to find another doctor. In the interim, I’d gain and lose jobs due to whatever had taken up residence in my once amazingly functional body. I’d gain and lose medical insurance as well. Needless to say, I also went into deep and terrifying medical debt, while also being denied pain treatment. I was ineligible for individual policies because I had a pre-existing condition. 

I was forced into taking antidepressants when I didn’t need them. I wasn’t depressed, I was in pain. I was also forced to undergo counseling twice; both times I was dismissed after one visit because it wasn’t a mental issue I was dealing with. I was too embarrassed to properly express my pain levels. Forced to downplay how desperate I was for pain relief. 

I was even turned away by receptionists, who flatly and rudely said, “We don’t see or treat pain patients.”

That’s a short synopsis of why I am where I am 20 years later, essentially bedridden. The pain doesn’t allow for restful sleep. I can feel my health disappearing. I now have weight issues from hypothyroidism, no appetite most of the time, insomnia that doctors won’t treat, and very high blood pressure. 

After 18 years, I finally got to a pain clinic, as they call them now. The doctor has two physician assistants, one who believes everyone is a drug addict and one who wants to do a good job, but whose hands are tied by government guidelines and overreach. 

I am under-treated by a long shot, yet I am harassed by the pharmacist every single month. I use one pharmacy and one doctor, but still run into denial or delay getting a prescription filled. I had to explain and essentially beg the pharmacist to get a small script filled after my most recent invasive surgery for a spinal cord stimulator. 

Four months later, I’m still in tremendous pain and have a nearly constant tremor in my right arm. The stimulator seems to hit on a nerve and my muscles seize up, the pain rising to levels that I didn’t know a human could withstand. It’s awful. It’s painful. And I am under-medicated because of criminals I never had a thing to do with. 

I have been told that my pain will never get better and can never be cured. It will only get worse as the degeneration continues. Wishing for it to be over is a pervasive daily thought. I have to work diligently to chase those thoughts away, so as not to fall prey to giving up.

My doctors can’t or won’t treat me because my chronic pain contributed to all the addicts all over the world. I’ll admit that’s a ridiculous statement when they admit they’ve gone too far in denying me proper medical care. 

I am 43 years old.

Leanne Gooch lives in Missouri.

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

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

Wear, Tear & Care: The Curable App

By Jennifer Kilgore, PNN Columnist

Nobody wants to be told that pain is in their head. If you’ve been in an accident like I have or suffer from a debilitating condition, that translates to: “This pain is your fault. You’re just lazy. If you tried harder, you wouldn’t be in pain.”

Pain is in your head. Pain is a signal that says your body is in danger, and for many people that switch never turns off. It becomes chronic, endless, crippling and traumatizing. This leads to a sort of fossilization in which we are scared to move, because movement hurts. Our lives become smaller, but the pain becomes larger until it consumes the entire world.

When my pain therapist suggested I try EMDR therapy (eye movement desensitization and reprocessing) for post-traumatic stress disorder, I resisted for two years. Why should I have to make a concerted effort to get rid of my pain and work through memories of crumpled metal and squealing tires? Why was it my responsibility to fix things when somebody else’s negligence was the cause of my injuries?

As always, it’s more complicated than that. My pain signals have coalesced over the past 15 years into a body-wide tangle of energy that never stops hurting. It spreads from my back up to my neck, down into my arms and legs, wrapping around my ribs. Pills are thrown into the void. Devices are worn. The pain remains.

I can’t even remember how I stumbled across the Curable app. I think it came up on a Facebook ad, though I do get many Google Alerts for this type of product. Either way, I now have it downloaded and pay for the annual subscription ($6.39 per month).

CLARA

The Curable app is like having a virtual therapist -- her name is Clara -- on my phone designed specifically for chronic pain. I can work through these memories in the comfort of my own home, on my own time.

As described in their FAQ: “Curable is an online pain psychology program. Modern research tells us that recurring pain is caused by multiple complex and interconnected factors. Treatments like drugs or chiropractic try to target some of the chemical or structural issues, but these issues are only part of the equation when it comes to recurring pain.”

Pain researchers have discovered that the way we act and think play a significant role in pain reduction. I’m not saying that people don’t have valid injuries -- I broke my back in four places and have two fusions in my neck -- but I know, deep down, that my level of pain does not make sense. There were structural abnormalities. Most of them were fixed.

What’s left?

The rest remains in my head, and I am quite curious to see what is actually pain and what part is catastrophizing, fear, anger and stress. Curable says that this cycle of pain can be “deprogrammed,” and the app trains patients to tease apart what is real pain and what is not.

The program is easy enough to use. It can be done entirely on a computer, tablet or phone, and it’s compatible with almost every device.

Clara, the virtual pain coach, interacts with you by a stream of text messages, and it honestly feels like I’m talking to a friend who just gets me. She sends information and leads you from one activity to another, offering resources, exercises and funny gifs to help you “reverse the cycle of pain going on in your brain.”

Each session is between five and 20 minutes, and lectures run about the same length. Some of them are difficult -- for instance, I’m resisting the “Identifying Your Stressors” exercise in which I have to free-write, simply because I don’t want to face that part of my brain. It’s hard. I don’t particularly like waging battle against a part of myself, no matter how unwelcome that part is.

Clara even noted that many users find the writing exercises difficult and avoid them in favor of the other activities, because who wants to commit to such a level of self-reflection?

The makers of the app know this, and they get how hard it is because all three of the founders suffered from chronic pain. That level of understanding makes all the difference.

Curable is designed for three weekly sessions, though any pace can be set. A survey of users showed that some reported a reduction to zero pain within three weeks of trying the app. Everyone’s pain experience is unique, however, and they acknowledge that “there is no correlation between the total number of exercises you complete… and when you will begin to experience relief.”

As they also note, “Racing through the program ‘to feel better faster’ will not work.” I’ve found that racing through is pretty much impossible, because facing all of these thoughts and memories is exhausting.

I’m very excited about this app. I think it will be a great complement to my EMDR therapy and can keep me on track when my therapist can’t. Clara even speaks to me in a way that only other pain patients do. She understands our language, and the relief from that is staggering.

You can try the Curable app for free here.

Jennifer Kain Kilgore is an attorney editor for both Enjuris.com and the Association of International Law Firm Networks. She has chronic back and neck pain after two car accidents.

You can read more about Jennifer on her blog, Wear, Tear, & Care.  

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