Grieving a Former Life

By Pamela Jessen, Guest Columnist

Once upon a time, there was a woman named Pamela. She was a strong, vibrant woman who worked as an operations administrative assistant for a company called FGL Sports, which operated a chain of sporting goods stores in Canada. Pamela took care of the administrative needs of the director and senior management team. 

Unknown to these people, Pamela lived with fibromyalgia and osteoarthritis. She did her job so well that she was able to keep these illnesses hidden for a long time, but they gradually started to get in the way of her work. Pamela eventually had to leave her job and go on permanent disability.

That was really devastating for Pamela because work was her life! She loved everything she did, from organizing training meetings and corporate functions to keeping her boss’s life on track. 

Once she was no longer working, a lot of negative feelings started to dwell up inside Pamela. She started feeling depressed, angry, sad and lonely. These were natural responses to having a chronic illness, but it was also frustrating to have to deal with them on top of not actually having a job to go to.

Pamela felt herself getting more depressed and sometimes it was easier to just stay in bed and sleep rather than get up and face life. She knew this wasn't good, but there really wasn't any reason to get up anymore.

Well, of course, that woman was me. It was a difficult phase of my life, as work had always been my passion. I was an administrative specialist in retail support for most of my career and I loved what I did. Every day was a treat. Unfortunately, my body just couldn’t keep up with me. The pain and exhaustion that goes along with fibromyalgia and osteoarthritis took over my body and I had to surrender to it. There simply was no other choice. 

After some time, I took a chronic pain management course and started feeling better mentally. This course explored the various stages of grief we go through when you experience a job loss because of illness and disability, and I realized that was exactly what had happened to me. I had been grieving. 

There are five stages of grief: denial, anger, bargaining, depression and acceptance. The instructor asked us what we had to give up in our lives because of chronic illness. He had us make a list and to really think about what was on that list. Mine, of course, was my job and the volunteering that I loved to do. 

I knew going back to work wasn't going to happen again, but I was sure there must be a way I could use my volunteer skills on my terms. Then one day I noticed an advertisement in my local paper for an organization called Patient Voices Network in British Columbia and it looked perfect for me. The group was looking for volunteers who could be the voice of the patient when health care providers needed that voice in their engagements. I attended an orientation session and before I knew it, was attending my first assignment! I loved it from the start and have been an active participant ever since. 

Currently, I am the co-chair of the Oversight & Advisory Committee for Patient Voices Network. I also sit on the Clinical Resources Committee for the BC Emergency Physicians Network. 

It’s amazing how getting involved again in something you love can bring the grieving process full circle to acceptance. I realized that I had given up a lot because of fibromyalgia and osteoarthritis. But by accepting my new limitations, I actually gained a whole lot more.

Pamela Jessen lives in Langford, British Columbia. She has a blog called There Is Always Hope, where she writes about living with invisible illness.

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.

How Common Is Opioid Addiction?

By Roger Chriss, PNN Columnist

As the opioid crisis continues to worsen, there is increased scrutiny of both prescribing levels and fatal overdose rates. The goal of reducing opioid prescriptions is to decrease the exposure to opioids, on the theory that medical use of opioid analgesics is closely linked with addiction and overdose risk.

But how valid is that theory? A key issue in the crisis is opioid addiction rates, which can be divided into medical and non-medical addiction.

Medical Opioid Addiction Rates

The National Institute on Drug Abuse (NIDA) reports that 8 to 12% of patients on long-term opioid therapy develop an opioid use disorder.

“The best and most recent estimate of the percentage of patients who will develop an addiction after being prescribed an opioid analgesic for long-term management of their chronic pain stands at around 8 percent,” NIDA Director Nora Volkow, MD, told Opioid Watch.

The NIDA estimate is well-researched and widely accepted. But there are other estimates, each with important qualifications.

Cochrane found in a major review of studies of long term opioid therapy for non-cancer pain that only 0.27% of participants were at risk of opioid addiction, abuse or other serious side effects.

In another large study, The BMJ reported that only about 3% of previously opioid naïve patients (new to opioids) continued to use them more than 90 days after major elective surgery.

Other addiction rates include numbers as low as 1% and as high as 40%. But details matter. Much of the difference in addiction rates stems from three factors:

1. How well screened the patient population is

2. How carefully monitored the patients are during opioid therapy

3. How the criteria for opioid use disorder are applied

In other words, a well-screened and closely monitored population of adults with no risk factors may well have an addiction rate of 1%. The recent SPACE study by Erin Krebs, MD, in which over 100 people with knee osteoarthritis and low back pain were put on opioid therapy for a year, saw no signs of misuse, abuse or addiction. There were also no overdoses.

Non-Medical Opioid Addiction Rates

It’s also important to look at the percentage of people who become addicted to opioids without ever having an opioid prescription. Here the addiction rates are much higher.

A 2009 study in the American Journal of Psychiatry found that among treatment-seeking individuals who used OxyContin, 78% had not been prescribed the drug for any medical reason. The OxyContin was “most frequently obtained from nonmedical sources as part of a broader and longer-term pattern of multiple substance abuse.”  

The 2014 National Survey on Drug Use also found that about 75% of all opioid misuse starts outside medical care, with over half of opioid abusers reporting that the drugs were obtained “from a friend or relative for free.”

Heroin is considered highly addictive, with nearly one in four heroin users becoming dependent. Importantly, most people who try heroin already have extensive experience with other substances, including opioid medication, and many have serious mental illness. There is no research on the addictive potential of heroin in drug-naive people.

Relatively little is known about the complex and concealed world of nonmedical opioid use. Researchers like UCSF’s Daniel Cicerone are working to fill this gap by collecting information on overdoses to get a more accurate picture on the type of opioids being used.  

Risk Management

Opioids remain an essential part of modern medicine, from trauma and battlefield medicine to surgery, end-of-life care and long-term management of chronic, progressive degenerative conditions. This makes risk management vital.

Current tools to screen patients include the long-standing COMM tool and the new NIDA TAPS tool. Novel approaches using genetic testing for opioid risk may eventually help clinicians better assess risk, too. And improved data analytics may also help reduce addiction.

"Understanding the pooled effect of risk factors can help physicians develop effective and individualized pain management strategies with a lower risk of prolonged opioid use," says Ara Nazarian, PhD, a researcher at Beth Israel Deaconess Medical Center.

The Krebs SPACE study achieved an admirable level of safety by carefully screening and monitoring patients during opioid therapy. A similar patient-focused approach that acknowledges the low rate of medical opioid addiction and works to minimize it further is likely to bring benefits to both individuals and society at large.

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.

I Have No Life Without Pain Medication

By Teresa Brewer, Guest Columnist

In 2003, I developed a rare illness called retroperitoneal fibrosis, also known as Ormond’s disease. Many have died from this progressive and painful disease when their abdominal organs became blocked by a fibrous mass.

I have a fibrous mass in my right abdominal area that extends into my back and right leg. The mass was about the size of a soccer ball when it was found during a cat scan and exploratory surgery. The mass is smaller now, but I still have severe chronic pain. And because of the opioid crisis, I was weaned off pain medication in March.

TERESA BREWER

My doctor sent my medical records and referral letters to 17 pain doctors. So far, none have accepted me. Many pain doctors are so busy they're not taking new patients, and many don’t know anything about retroperitoneal fibrosis or won’t take the time to learn about it.

I've been told, "I don't know about your illness and therefore I can't help you!” It’s devastating to hear that.

I do have an appointment at a pain clinic in September to talk with a nurse, get a physical and go over my records. Maybe then I’ll get an appointment to see a doctor. I HOPE! But then who knows, that could be another month or two. The lady who called said they have been overrun with new patients and were trying to see all they can.  But they have a 3-month backlog.

Because I was taken off pain medication, I missed my daughter’s wedding. That really upset and depressed me. She lives in another state and I was looking forward to seeing her get married. She called to tell me she was engaged, and we talked many times over the phone about the wedding. She set up appointments to get my hair and makeup done and even bought me two dresses. 

It totally devastated me to call her in April to tell her I wouldn't be able to make it. We both cried, and I cried almost every day until her wedding day. My son used FaceTime so I could at least watch the wedding, but it was not the same as being there in person. I was heartbroken. 

I also can't see my grandchildren until something is done about the pain. I have a grandson and recently have a new granddaughter, who was born in July. I haven’t seen her yet and haven’t seen my grandson since March. I love my grandson and granddaughter with all my heart!  I have no life. 

Doctors are taking many patients, including cancer patients, off pain medication because they fear losing their medical licenses. And some hospitals aren't giving pain medication to surgery patients. Instead they’re getting Tylenol or Aleve. That is not right! If anyone has surgery, and I've had six surgeries, you need something stronger for pain management.

Why let people suffer?  Many individuals who have abused pain medication are switching to heroin, meth or cocaine. A real drug addict will always find something to take. I've always hated taking medication, even for a headache, but when I became ill, I had no choice.

It seems they are more worried about addicts dying than about people who really need pain medication. I'm not talking just about me. Many people who live with retroperitioneal fibrosis have been taken off pain medication and are suffering.

An individual has no life when they are at home in major pain. It's very hard to get ready to go anywhere or do anything. Many of us are bedridden due to chronic pain. 

Is anything being done about this problem? If so, I'd like to hear it! 

Teresa Brewer lives in Arkansas.

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.

How Rx Opioids Saved My Firefighter Husband

By Sonia Bodie, Guest Columnist

A captain at a very busy fire department, a Homeland Security employee, and an instructor with the South Carolina Fire Academy. That was my husband’s life for 17 years. Brent and I both had busy careers in public safety. I'm a paramedic and a firefighter. 

One morning nine years ago, after getting off a particularly grueling 24-hour shift, we decided to drive to some property we own and place a trail camera to observe the wildlife. We drove our off-road vehicle many times before, but that day a grave mistake was made. Whether we were tired, careless or just from a sense of invincibility, I'll never know, but up an extremely steep hill we went!

Almost at the top, the four-wheeler lurched and rolled, throwing us both violently off. I sustained a lower leg fracture that had to be surgically repaired. Brent fractured three vertebrae in his neck. His neck was broken and life as we knew it came to a screeching halt. 

It was like a nightmare that just wouldn't end. Brent needed extensive surgery that included cadaver bones to replace his fractured ones, pins and screws, and a halo neck brace. This sort of thing happens to the people we care for, but this time it was the protector who needed protection. 

Brent’s career was put on hold, but in his mind if he did exactly what the physicians said to the letter, it would be just a matter of time before he would be back to work. He began physical therapy. Four to five days a week he attended. But the pain continued.

He was prescribed anti-inflammatory drugs, a TENS unit, ice and heat therapy. Brent tried them all, thinking his career was just a short step away. 

BRENT AND SONIA BODIE

I recovered and went back to work. But my strong, never-sick husband was slowly becoming a man I barely knew. The pain in his neck was mind boggling, along with severe numbness and constant tingling in his right arm and hand. The severity of the pain completely changed him. 

After a year, Brent’s neurosurgeon gently told him that his part in the healing was over and that he wouldn't sign any medical clearance for him to return to full time firefighting duty.  Brent looked at the doctor with something between shock, horror and bewilderment.  With tears streaming down his face, in a voice so soft and cracking, Brent asked, "What do I do now? I've been a fireman since I was 18 years old. When will this non-stop agony end?" 

I couldn't believe things could get any worse, but they did. Talk of suicide started swirling. He shut down. I cannot count how many times I'd come home from my 24-hour shifts to find Brent curled up in a ball on the floor in so much pain.  

The straw breaker occurred one cold, windy morning.  I came home from work to find Brent sitting at the kitchen table with a pistol beside him. I was frozen in fear. I couldn't find my voice! He said, in a tone I'd never heard from him, "I will NOT continue to live another day, not one single more, in this much suffering and torture! I'm done!" 

I immediately contacted the doctor, who got Brent to see a pain specialist that day.  This was the beginning of a new life for us. I’m so thankful and grateful for this physician. I cannot say that Brent’s agony ended on the spot, but after three months of trying different pain relievers and doses, they found a medication regimen that worked for him. 

Brent goes there monthly. There are urine drug tests and visits with a psychologist before he sees the physician. This is a new season, one that includes opiates. They are taken exactly as prescribed and kept secure, locked in a fire safe.

I see the opioid crisis daily. I give my all as a medic to save those who have chosen to snort, ingest or smoke opioids, most of them illegal, for a life-ending high.  Then I come home to a beloved spouse, whose opioid medication literally saved his! 

I'm very fearful what will happen if Brent’s medication is lowered or stopped because of the new, yet antiquated, opioid prescribing laws. The persecution of the innocent, who require these life-giving medications, must cease.  My husband, who saved so many lives, depends upon it. And he's important too! 

Sonia and Milton “Brent” Bodie live in South Carolina.

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.

Chronic Pain Patients Left Out of the Equation

By Mary Cremer, Guest Columnist

I love math. And I was thinking the other day that chronic pain patients are often left out of the equation.

Many of us have chronic health conditions. We spend hours each day scheduling appointments, being tested, having surgeries, getting injections, undergoing dialysis, going to chemotherapy, doing physical therapy and so much more. Let’s not forget fighting with insurance companies and the time that takes.

Many of us on are on opioid medication and sign pain contracts. We have to go to the doctor’s office and subject ourselves to drug testing. We have to pick up paper prescriptions, go to the pharmacy and hope they have our meds.

Some of us work, some of us do not. But honestly, being sick is a full-time job all by itself.

I think many chronic pain patients are too busy being sick to notice what is happening to our rights. I turned on the television recently and heard about the “opioid crisis.” To me, it was bothersome, as I think of it as an illegal drug issue.

I did some research on the leading causes of death in United States. Here are the top ten and number of deaths in 2015, according to the CDC:

1. Heart Disease: 633,842
2. Cancer: 595,930
3. Chronic Low Respiratory Disease: 155,041
4. Accidents: 146,571
5. Stroke: 140,323
6. Alzheimer’s Disease: 110,561
7. Diabetes: 79,535
8. Influenza & Pneumonia: 57,062
9. Nephritis (kidney disease): 49,959
10. Suicide: 44,193

But wait! Where are the opioid overdoses? They didn’t make the top 10! With the constant drumbeat in the news about overdoses, you’d think they’d be high on the list. 

Then I found that the CDC reported 33,091 opioid deaths in the U.S. in 2015. But, that was ALL opioid deaths, including illegal drugs and legal medications. And many times, if someone had opioids in their system at death, they also had other drugs. 

The hot topic from elected officials is how can we save all of these people from overdosing. But, why isn’t heart disease or cancer the hottest topic? Surely there are many other conditions that need attention. Could money be a factor? 

Many politicians believe opioid medication is the problem and the solution is to restrict access to it. That’s the worst thing that could happen to chronic pain patients. Let’s be honest, drug addiction will always exist and illegal drugs will always exist.  

There have been a lot of misconceptions, misinformation and lies about pain medication. We have been told new laws, insurance coverage and addiction problems are why our meds are being reduced or cut off. But, who is thinking of us? Once again, we’re out of the equation. 

According to The Washington Post, more than 25 million Americans suffer with chronic pain. Some estimates put the number even higher.  Why are our voices not screaming? Perhaps because there is a stigma attached to taking pain meds. Many of us are afraid our employers, friends and even family will find out we use them.

Some patients that still have their meds don’t realize how serious this issue has become.  Others that have lost their meds may be speaking out, but few are listening. Again, we are left out of the equation. 

One equation you can be sure of.  When patients lose access to pain medication, there will be an increase in additional health problems that will cost this country more. Disability, unemployment and suicides will increase tremendously, and the doctor/patient relationship will be forever compromised. I predict a doctor shortage in the future. 

The weakest among us now face the biggest fight of our lives. 

In order to get us back into the equation, pain patients need to proactively contact our elected officials. We need to tell our stories from the heart. We need to present real statistics and facts. We need to be calm and hopeful. We need to ask elected officials for help. Let’s put ourselves back in this equation and fight. 

Mary Cremer lives with her family in Missouri. She has Ehlers-Danlos syndrome and Chiari Malformation.

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.

Pain Management Not the Same as Addiction

By Marvin Ross, Guest Columnist

It's bad enough that mental illness is, for some strange reason, paired with addiction. But now the Canadian Mental Health Association (CMHA) wants to include pain management as part of its “National Pain and Addictions Strategy.”

Addiction is a terrible affliction for the person addicted, for their family and for society. Of that, there is no question. But it is now considered a mental illness and I have no idea why. As I wrote once before, “Addictions at some point involve choice. You made a decision to go into a bar and start drinking or to snort coke, take opioids or inject heroin. No one has a choice to become schizophrenic, bipolar, depressed or any other serious mental illness. There is no choice involved whatsoever.” 

I also cited smoking, which most people of my generation did and most of us quit. I smoked two  packs a day and quit because my wife has asthma and was pregnant. I was motivated.

I also pointed out that during the Vietnam War, 40% of troops used heroin and the government was fearful of what would happen when they came back. Fortunately for all, 95% of those troops gave up heroin without any intervention whatsoever. They were no longer in a dangerous war zone trying to escape anyway they could.

Chronic pain patients are generally neither addicts nor mentally ill. What they are addicted to is being as pain free as they can be. Chronic pain results from any number of valid medical conditions, severe trauma and/or botched surgical procedures. For many, opioid medication is necessary to have any quality of life.

But CMHA sees opioid prescribing as an inevitable bridge to addiction:

“CMHA is currently collaborating with research partners to explore the efficacy of multidisciplinary care teams and their role in pain management and opioid tapering. CMHA also believes that creating a National Pain Strategy that includes addictions would allow for more effective training and would better prepare physicians and primary care providers to treat pain in Canada.”

CMHA is correct when they say that pain is poorly managed in Canada and not well understood. But what expertise do they have to make recommendations on how pain should be treated? Their primary recommendation is that we should find alternatives to opiates. And, if we must give patients opiates, there should be an exit strategy, so they do not take them for too long.

This is based on the false assumption that addiction is being fueled by those with chronic pain, even though overdose deaths in Canada are predominantly among males aged 30-39 and involve illicit fentanyl. Contrast that to the demographics of chronic pain, which is mostly seen in women and older adults over the age of 56.

Those are two totally separate populations!

If opioid medication is a contributor to this problem, then why did opioid prescriptions in Canada decline by over 10% between 2016 and 2017, while opioid overdose deaths rose by 45% over the same period? 

The CMHA calls for an increase in alternative therapies to treat chronic pain. This is the definition of alternative medicine from the New England Journal of Medicine:

“There cannot be two kinds of medicine -- conventional and alternative. There is only medicine that has been adequately tested and medicine that has not, medicine that works and medicine that may or may not work. Once a treatment has been tested rigorously, it no longer matters whether it was considered alternative at the outset. If it is found to be reasonably safe and effective, it will be accepted. But assertions, speculation, and testimonials do not substitute for evidence. Alternative treatments should be subjected to scientific testing no less rigorous than that required for conventional treatments.”

Opioids work for chronic pain, as found in a 2010 Cochrane Review and by a more recent review in the Journal of Pain Research.

Jason Busse, the chiropractor who helped draft Canada’s 2017 opioid guideline, told me in a Twitter debate that this second study was only for 3 months so it is not relevant for the long term use of opioids. However, Prozac was approved for use by the U.S. Food and Drug Administration after two clinical trials of 6 and 8 weeks duration. Many people use Prozac for years.

Neither chiropractic, massage or acupuncture have been shown to be effective for chronic pain. Many doctors are also pushing anti-epilepsy drugs like gabapentin (Neurontin) as an alternative to opioids, but they do not always work and have major side effects. The same is true for its sister drug, pregabalin (Lyrica).

There is some evidence that medical cannabis may help with chronic pain, but it is very expensive and, even when prescribed, is not covered by public or most health plans.

Members of my family suffer with chronic pain and they do not want a National Pain and Addictions Strategy. What they want is continued access to the pain medication that has helped them carry on as normal a life as possible. There is no euphoria when they take these meds, other than the euphoria that comes from reducing their pain levels sufficiently so they can enjoy a trip to the cinema, theatre, dinner with friends and whatever else gives pleasure.

In June, I attended a meeting in Oshawa, Ontario arranged by chronic pain patients with a representative of the College of Physicians and Surgeons of Ontario. About 30 pain patients attended from all over Ontario and told the doctor how much they were being forced to suffer because their medication was reduced. One woman said she is not capable of getting out of bed to care for her children and would consider suicide if it weren't for them. Similar comments were made by others, but the doctor was unmoved and left early.

If CMHA (and others) can call for decriminalizing drugs and providing the addicted with safe drugs, why can no one be willing to provide pain patients with the same? It is inhumane.

Marvin Ross is a medical writer and publisher in Dundas, Ontario. He has been writing on chronic pain for the past year and is a regular contributor to the Huffington Post.

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 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.