How Far Will You Go for Pain Relief?

By Carol Levy, Columnist

In 1991, my surgeon ran out of options on how to help me. I’d had most of the procedures available for trigeminal neuralgia. Even the ones that helped were always short lived.

In a last ditch effort, he tried a dorsal column stimulator implant. It was successful in stopping about 85 percent of my pain. I was still disabled by severe eye pain, but I no longer had the spontaneous pain that could be caused by a simple touch.

Unfortunately, I lost the implant to an infection. A second implant did not help at all and also became infected.

The doctor told me there was nothing else he could do. There was so much scar tissue in my neck, where both implants had been placed, that surgically implanting another stimulator was impossible.

I was inconsolable. This was it.

No medications were helping and I dreaded a new neurosurgical attempt. But how could I refuse, if it might relieve the pain? Pain is different than most other symptoms. We are biologically ordained to do almost anything we can to be free of it.

The doctor understood this. To my astonishment, he had not given up. One day he came to me and said, “I have an idea.” It would be another implant, in the sensory cortex area of my brain,

The surgery would be 100% experimental. Only 12 other people in the world had it. Most of those were for pain in a different area of the brain than trigeminal neuralgia.

But I was in pain. Daunting, intolerable and disabling pain. Of course I said, “Yes.”

Recovering from the surgery was horrendous. I was anesthetized, but repeatedly awakened so they could ask, “Where is the pain? Where is it now?”

Over and over again; awake, torture, sleep, awake, torture, sleep. Finally, there was blessed sleep only.

I was not convinced the implant helped, until it failed 20 years later. Then I realized it had slightly reduced the level of my phantom pain. Not much, but enough that once it stopped working, the pain increased.  It did nothing for the eye pain, but any relief is to be celebrated.

I thought the doctor who took over my surgeon’s practice could fix it, but that was not feasible. The implant was so old the replacement parts were no longer available.

In two weeks he will take the implant out so that I can get an MRI, to see if there is anything else he can do to try and help me (I cannot have an MRI because of the implant).

The funny thing is I’ve asked him, more than once: “Can't you use the newer version and just put the implant back?”  

The answer is always no.

It didn’t occur to me that I was asking him to put me through the torture of the procedure all over again.  Worse still, once I realized repeating the surgery meant repeating the torture, I still found myself entertaining the thought: Maybe I could tolerate it if he would do it.

I cannot imagine putting myself through that horror again - when I think about it sensibly. But, when I think about it from a pain standpoint and how I may get some relief, it seems like a sensible idea.

Thankfully, he's refused so the debate within myself is purely hypothetical. I wonder though, what exactly will we do or entertain if it offers the possibility of ending the pain? How far are we willing we go?

That, in its own way, may be as petrifying as the pain itself.

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.

How An Overdose Can Be Wrongly Reported

By Rochelle Odell, Guest Columnist

I started researching government statistics on overdose deaths a few weeks ago and learned the data is compiled by the Healthcare Cost and Utilization Project (HCUP), which is part of the Department of Health and Human Services.

HCUP keeps databases of ICD codes (International Classification of Diseases), which are built from hospital billing records. Basically, the codes identify what someone was being treated for at the hospital at the time of their death.

I realized that the ICD coding often begins when a person first enters the healthcare system (i.e. a trip to the emergency room or admission to a hospital). I also noticed that ICD codes for opioid overdoses do not separate the legal use of opiates from illegal drug use.

Then I learned that if a person dies, it could be months before the final coroner's report comes out. Does the government go back and change the ICD codes once the actual cause of death is determined?

Unfortunately, they do not.

So it all boils down to whether a person has opiates – any kind of opiate -- in their system at the time of death. If they are a chronic pain patient, there’s a good chance they will have opioid pain medication in their system. But rather than focusing on the true cause of death, everyone seems to immediately assume it was the medication.

I brought the point up with HCUP and told them their numbers were flawed and why. I was surprised to receive a nice email in response, validating my concerns and stating they would be passed along to the correct agency, the National Center for Health Statistics (NCHS).

“We will forward your email to NCHS to see if anything can be done to make the separation between illicit and licit use clearer in the coding,” HCUP replied.

If a citizen can find these flaws in a short time why can't anyone else? And how do I know if my concerns were truly shared and who received them?

As pain patients, we need to ensure that our families are aware that if we die from something unrelated to opiates, they’ll need to advocate for us even in death. Just finding opiates in our system does not mean we died of an overdose.

A good example of what could go wrong – and misreported -- happened earlier this month. A neighbor told me she had been walking her little dachshund when she stopped by a friend's house. The door was ajar, but there was no response. She sends her dog in and gets him to bark. At that point, her friend finally woke up. She had apparently suffered a stroke!

They called 911 and my neighbor waved down the ambulance as it approached. Her friend is in her 60's and right away the EMT verbally stated "it must be an overdose."

My neighbor immediately corrected the EMT and said her friend was not on pain medication and that this was not an overdose.

If my neighbor had not been there to set them straight, her friend may have been taken to the hospital and given the ICD code for a suspected overdose. The code could have followed her throughout her stay at the hospital, and if she had died, her death may have been wrongly reported as an overdose.

We need to stop this nonsense at step one.

Rochelle Odell lives in California. She suffers from Complex Regional Pain Syndrome (CRPS).

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.

Doctor Makes California Pain Clinic a Special Place

By Kristen Ogden, Guest Columnist

Rarely have I spent five days engaged in doing work that left me feeling as fulfilled as my recent stint helping as a volunteer in Dr. Forest Tennant’s pain clinic in West Covina, California.

For the past 3 years, I have been privileged to volunteer whenever I have traveled with my husband, Louis, for his appointments with Dr. Tennant. However, this was the first time I have given much thought to exactly what makes a visit to Dr. Tennant’s clinic such a special experience for his patients and their families.

COURTESY CORIN CATES-CARNEY/MONTANA PUBLIC RADIO

Dr. Tennant and his wife and office manager, Miriam Tennant, sometimes refer to the clinic as a “mom and pop” operation.  If “mom and pop” makes you think of behind-the-times or unsophisticated, think again. 

Hidden in plain view, among the simple furnishings and interesting artifacts of a long career, is a true frontier in medicine, where discoveries are made, causes of rare diseases are pursued with vigor and, most importantly, a place where people suffering from constant pain are helped like nowhere else. 

One thing that stands out about Dr. Tennant’s clinic is the focus on family participation.  He requires prospective patients to be accompanied by a family member on their initial visits and encourages family members to attend.  The active engagement and participation of family is critical to a successful partnership with Dr. Tennant.  Patients and family members are required to sign documents to show their understanding of the off-label use of medications, willingness to participate in research, and acceptance of potential risks involved. 

The role of the family in supporting the patient is critical.  And why wouldn’t it be?  Intractable pain exacts its toll on the entire family.  A person suffering from undertreated severe pain becomes unable to function normally or participate fully in life.  Many face  loss of income, depletion of savings, routine tasks that don’t get done, loss of quality time with family, loss of contact with friends, and the loss of the ability to enjoy life.  Families with excellent relationships and coping skills are greatly affected. The impact on families less tightly bound can be enormous.  

I know many of Dr. Tennant’s patients and their family members.  They are just regular folks, nice people from all kinds of backgrounds, with one thing in common.  Somewhere along the way, their lives were hijacked by a rare illness or disease that bombarded them with unimaginable pain. 

Dr. Tennant’s embrace of patients extends beyond the walls of the clinic and the usual office hours.  During clinic week, you can expect to find him with Miriam enjoying dinner at a favorite restaurant with patients and family members, including many who traveled across the country and are staying in local hotels. It’s common to hear Dr. Tennant say, “We’ll be at Marie’s tonight around 7. Come join us for dinner.” 

Who has ever gone to see a doctor and gotten invited to dinner?  But that’s what he and Miriam do.  It’s another way they engage with families, and demonstrate their interest and care for patients.  They like to get to know their patients as people, not just names on a medical chart.

The informal group dinners bring other benefits.  For some, it is the first time they will meet others who share the agony of intractable pain or share the same illness. You may go to dinner wondering if you will enjoy an evening with strangers, and leave feeling like you have found a new extended family. 

Dr. Tennant always has some new diagnostic test or research study up his sleeve.  Recently, he asked patients to participate in a new DNA study of genetic indicators not previously studied in rare diseases that involve chronic pain.   Every new test and diagnostic tool reveals important information – hormone panels, nerve conduction studies, blood tests for inflammatory biomarkers, and MRI images that may reveal the presence of adhesive arachnoiditis.  

All of these diagnostic research efforts produce new insights.  For example, in a study of over 100 intractable pain patients who require relatively high opioid doses, Dr. Tennant found that 91% of them had genetic defects that impacted their ability to metabolize medications, suggesting why they need higher doses for effective pain relief. 

Another example is the growing understanding of the impact of pain on hormone levels.  Severe chronic pain initially elevates hormones, but if uncontrolled for too long, hormone levels become depleted.  Hormone levels that are too high or too low are biomarkers of uncontrolled pain, and indicate that higher doses of pain medications or hormone replacement may be necessary.  Ongoing clinical research is a key element of Dr. Tennant’s approach to pain care. 

In my visits with Louis to numerous pain doctors prior to finding Dr. Tennant, almost all of them said, “The goal is to get you off those pain medications.” 

I was shocked when I first heard Dr. Tennant say, “The goal is to relieve your pain.” 

Dr. Tennant has the expertise to “see” a patient’s pain and to ask the right questions. His discerning eye can distinguish between intractable pain patients and the few who come to the clinic seeking drugs for the wrong reasons. 

Dr. Tennant understands that most patients have already tried and failed at many different pain treatments.  When that is the case, he tries to determine what will work. The goal is to relieve pain so that the patient has a chance at meaningful improvement of function and quality of life.  There is no demeaning treatment, there are no words said that convey doubt or suspicion, there are no looks that say, “You must be a drug seeker.”  Dr. Tennant’s clinic is one of very few medical facilities I have visited where there was no evidence of stigma toward pain patients. 

An important piece of Dr. Tennant’s philosophy is that if you effectively treat the pain, improvements in function and quality of life will follow.  Dr. Tennant prescribes medication as needed to enable patients to effectively manage their pain, which in turn helps to stabilize their overall condition, while the underlying causes are identified and treatments are attempted.  If a patient’s pain remains undertreated, the likelihood of successfully treating the underlying causes is greatly reduced.

Transforming Pain Care

The Institute of Medicine’s 2011 report, Relieving Pain in America, called for “a cultural transformation in the way pain is understood, assessed, and treated.”  The characteristics I would seek in such a transformation of pain care are visible every day in Dr. Tennant’s clinic.  I wish that other doctors who treat chronic pain could get outside the bounds of their particular specialties and professional societies to view their patients differently. 

As Dr. Tennant’s research has moved forward, he has found that the majority of chronic pain patients who go to his clinic have 4 or 5 rare disease conditions:  adhesive arachnoiditis, post-viral autoimmune disease, Reflex Sympathetic Dystrophy (also called Complex Regional Pain Syndrome), and connective tissue disorders such as Ehlers-Danlos Syndrome.  All of these conditions are often accompanied by very severe, constant pain. 

In the last few years, Dr. Tennant has made great advances in identifying and treating the underlying causes of intractable pain.  He credits two recent scientific advances for enabling him to treat the causes rather than just the symptoms of pain. First, we now know that microglial cells within the central nervous system, once activated by a painful injury, disease or trauma, cause inflammation inside the brain and spinal cord.  This neuro-inflammation causes chronic pain to centralize in the spinal cord and brain, resulting in severe pain that is constant. 

Second, we now know that nerve cells may regrow, a process called neurogenesis.  Certain neuro-hormones in the brain and spinal cord can promote neurogenesis when neuro-inflammation is reduced.  Dr. Tennant’s approach is to reduce neuro-inflammation while simultaneously promoting neurogenesis.  His protocols for treatment of neuro-inflammation are in their early stage, but they are already providing disease regression, enhanced pain relief, less suffering, and, for some patients, reduction in the use of opioids. 

It is a true privilege to work as a volunteer in Dr. Tennant’s clinic.  When I asked him in 2014 if I could be a volunteer, I had two specific reasons:  to learn more so I could fight back against our insurance provider (who had suddenly decided to reduce the reimbursement for my husband’s pain medications), and to educate myself so that I could become an effective advocate for chronic pain patients.  We lost the battle with the insurance company, but I have certainly received an education that very few people have a chance to experience. 

Dr. Tennant’s methods and approaches are not proprietary -- he's eager to share them. There are many good doctors out there who could learn to do what he does, instead of focusing solely on the treatment of pain as a symptom. It doesn’t require a fancy clinic, lots of money, and corporate or university infrastructures.  What it takes is a doctor who is truly committed to relieving pain and practicing the art of healing. 

It is possible to manage pain with medicine instead of injecting the spine, inserting stimulators and pumps, or using other invasive procedures.  Instead of treating pain with these modalities, treat and relieve the pain with medication, stabilize the patient, and search for the underlying causes so that they can be addressed. 

At age 76, Dr. Tennant could have retired and given up his practice many years ago. Why does he put up with the many challenges of operating a pain clinic?  Because he truly cares about helping people who are suffering.

Kristen Ogden has advocated for her husband, a long-term intractable pain patient, for over 20 years.  She is the co-founder of Families for Intractable Pain Relief, an advocacy group for pain patients and their loved ones.

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.

Leaving Pain Untreated is Torture

By Janice Reynolds, Guest Columnist

One thing we need to keep in mind when discussing the so-called opioid epidemic is that people in acute pain are being persecuted and harmed, as well as those with persistent (chronic) pain. In fact, much of the witch hunt may have started with acute pain.

It has long been known that when acute pain is left untreated or undertreated it can lead to persistent pain, as well as a multitude of harmful side effects from pain.  I know my persistent post-craniotomy pain was at least partially caused by poor pain treatment after my surgery. Eight years later, I can still vividly recall the second night post-op, when the pain was horrendous. I cried and really wanted to die.

People in pain have always experienced prejudice and bias.  The current situation has allowed bigots to speak and act with impunity.  As with anything, you tell a lie often enough and it must be true.

Anyone who has worked in medicine has heard a physician, nurse, pharmacist, physical therapist, etc. make derogatory statements, refuse to prescribe appropriate medication, express opiophobia, and sometimes even hatred for people in pain.  Sometimes it can even be family members. 

I have two favorite stories that I’ll share. And believe me, after over 20 years as an advocate for people in pain, I have a lot of stories.

As a new nurse, I once had a patient admitted with severe abdominal pain and headaches. The doctor would only give her Tylenol.  He would go off duty, and I would call the covering physician and get morphine ordered.  The doctor would come in the next morning and discontinue the morphine, leaving her with nothing but Tylenol. 

The patient was diagnosed with cancer, and the doctor claimed her pain was just a reaction to her diagnosis (and some nurses bought into that!). 

I finally couldn’t take it anymore and told the family they could request another doctor (I could have lost my license for coming between a doctor and his patient). I suggested an oncologist, who was also a palliative care doctor, who I knew as compassionate and good at pain management.

The oncologist took over and got her comfortable. She died two weeks after the admission for acute pain.

The second story was in the midst of the AIDS epidemic. I had a patient who was dying (she had been a prostitute and IV drug user).  When I attempted to get more morphine for her because she was literally writhing in pain, the doctor refused, saying, “She should have considered her lifestyle choices before.”

In 2001, when the Joint Commission of Accreditation of Healthcare Organizations (JCAHO) came out with the first standards for pain assessment, we were ecstatic.  We were going to make pain visible and more people would get better treatment. 

Unfortunately, that is not how it worked out.  The anti-opioid activists were vocal about how the standards would push doctors to prescribe opioids, enable drug seeking, and so on.  Some even blamed the pharmaceutical industry, even though it had absolutely nothing to do with the standards. They were written by a professor of pharmacology and a nurse practitioner experienced in pain.

Fifteen years later, so many of these myths were still circulating that the Joint Commission felt compelled to come out with a statement refuting them.

Many actions now being taken affect acute pain care the most, such as removing pain questions from patient satisfaction surveys and poor treatment in hospital emergency rooms.  A hospital in New Jersey won praise and international attention for sharply reducing the use of opioids, until it was found to be in the bottom 3% of hospitals nationwide for quality of care.

Now they want to prevent opioids from being ordered for so called “minor” procedures and to limit the amount of opioids or number of days they can be prescribed for acute pain. And although pain care for cancer patients and the terminally ill is still touted as sacred, it isn’t as good as it should be and is losing ground.

You would think because pain can affect anyone at anytime that there would be more compassion. Yet we have politicians saying, “Yes, children need their pain relieved, however with the opioid epidemic they shouldn’t be receiving these powerful drugs” or “We need to be able to objectively measure pain.”

Torture, for the most part, relies on pain.  I realize there is water boarding and psychological torture, however inflicting pain is the method used throughout history. Politicians and the media are against torture, yet they do not see the mistreatment of pain as torture. It is actually torture of the worst kind, perpetuated by those who profess to have your best interests at heart.

A quote I always used in my classes and presentations comes from The Culture of Pain by David B. Morris:

“Failure to relieve pain comes perilously close to inflicting it.”

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country on pain management and is co-author of several articles in peer reviewed medical journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them.

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.

Senate Bill Would Protect Marijuana Use in Legal States

By Ellen Lenox Smith, Columnist

A group of bipartisan U.S. senators has announced plans to reintroduce a bill that would allow state medical cannabis laws to supersede the current federal prohibition. The bill would also greatly expand opportunities for medical and scientific research of medical marijuana.

The Compassionate Access, Research Expansion and Respect States Act – also known as the CARERS Act – is being sponsored by Senators Kirsten Gillibrand (D-NY), Cory Booker (D-NJ), Al Franken (D-Minn.), Rand Paul (R-KY), Lisa Murkowski (R -Alaska), and Senator Mike Lee (R -Utah). The House version is sponsored by Reps. Steve Cohen (D-Tenn.) and Don Young (R-Alaska). 

"The fact is our marijuana laws in America are broken," Sen. Booker said at a press conference. "They are savagely broken, and the jagged pieces are hurting American people."

The CARERS Act was originally introduced in 2015, but did not move forward. Back then, the bill only had three sponsors: Sen. Booker, Sen. Gillibrand and Sen Paul.

A big change from 2015 is that a new administration now occupies the White House and there are fears the Justice Department could once again start enforcing federal marijuana laws in states where it is legal.

Some in Congress do not want the feds messing around again with legal cannabis.

“The people have been pretty clear that this is something they don’t want the federal government to interfere with,” said Rep. Earl Blumenauer (D-Oregon).

If passed, the CARERS Act would leave in place laws legalizing medical marijuana in 30 states, the District of Columbia, Puerto Rico and Guam, and protect their citizens from federal prosecution. The bill would also allow veterans to access legal cannabis in those states. Currently, there are federal regulations that bar doctors in Veterans Affairs hospitals from prescribing cannabis to their patients. Veterans caught with marijuana in the system are also being denied access to opioid pain medication.

While running for president, President Trump said marijuana laws should be decided at the state level, but then he tapped Jeff Sessions to be his Attorney General. It is clearly known through his words and actions that Sessions does not believe marijuana should be considered a legitimate medicine, despite the beneficial impact noted by medical professionals across the globe.

In fact, Sessions sent a letter to Congressional leaders back in May, asking them to undo a provision in federal law that bars the Justice Department from going after legal marijuana businesses.

"I believe it would be unwise for Congress to restrict the discretion of the Department to fund particular prosecutions, particularly in the midst of an historic drug epidemic and potentially long-term uptick in violent crime," Sessions wrote. "The Department must be in a position to use all laws available to combat the transnational drug organizations and dangerous drug traffickers who threaten American lives."

But supporters of the CARERS Act feel Sessions' thinking is very wrong, especially when it comes to people gripped with chronic pain or conditions such as epilepsy.

Clinical studies have found that cannabidiol, or CBD as it's commonly known, can reduce epileptic seizures in children and young adults as much as 45 percent. The CARERS Act would take CBD off the list of controlled substances, thus allowing children in states where medical cannabis isn't legal to access the life changing oil.

"I dare him (Sessions) to sit down with families and listen to their stories and then pursue a policy like he's advocating for now," says Sen. Booker.

An uphill battle is expected, but the effort is picking up steam. Many red states have now passed some form of legal cannabis.

"I believe things are changing and they're changing fast," Sen. Gillibrand told Rolling Stone. "I think we will get the support we need."

Let’s write and/or call our Senators and ask them to not only support, but also co-sponsor the CARERS Act. To reach their D.C. offices, you can contact the Capitol switchboard at 202-224-3121. To send an email, check this website for their email addresses.

You can also go to this link set up by Americans for Safe Access to contact your Senator.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their 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.

The Link Between Chronic Pain and Depression

By Lana Barhum, Columnist

There are nearly 40 million American adults living with severe or significant chronic pain, according to the National Institutes of Health. Chronic pain affects more people than cancer, diabetes and heart disease combined.   

Chronic pain is devastating and can be a challenge to treat. Pain also causes depression and depression leads to decreased function, poor treatment outcomes and further healthcare costs. About half of people with chronic pain are also depressed, according to a recent study in the Journal of Affective Disorders.

"The dual burden of chronic physical conditions and mood and anxiety disorders is a significant and growing problem," wrote senior author Silvia Martins, MD, associate professor of Epidemiology at the Mailman School of Public Health.

Pain experiences are different for each person and your response to chronic pain depends on how you feel pain, and thoughts and behaviors related to your underlying pain conditions.  

When pain invades every aspect of your life and leaves you uncertain of the future, anxiety, sadness, anger and grief are imminent. For many, the burden is so difficult, it leads to major depressive disorder, also known as clinical depression.

Research shows the highest rates of clinical depression are in people with fibromyalgia. According to a study in Pain Research and Treatment, people with fibromyalgia have a 90% chance for depressed symptoms and up to 86% risk for major depressive disorder. 

What is Clinical Depression?

Clinical depression is more complicated than dealing with sadness and grief. This type of depression leaves you unable to focus on work, get good quality sleep, eat well, or enjoy time with friends and loved ones.  Some people experience clinical depression once, but many have experienced it several times during their life.

Some symptoms of clinical depression are:

• Fatigue and loss of energy
• Feelings of guilt and worthlessness
• Struggles with concentration and decision making
• Sleep problems, including insomnia or excessive sleeping
• Disinterest in almost all activities
• Constant thoughts of dying and suicide
• Significant weight loss or gain

My Experience with Clinical Depression

Depression has been a frequent visitor to my chronically painful life, but the first time I was formally diagnosed with clinical depression was 2011.  It had been 3 years since I was diagnosed with rheumatoid arthritis and fibromyalgia, two painful and life-altering conditions.  Not only was pain dominating my life, there was so much more happening because of pain, that I couldn’t handle it all. 

I knew I was struggling, but I didn’t know the extent.  I was crying for no reason, not sleeping, and my mind was constantly racing.  And I thought about death – not contemplating suicide but that death had to be better than living with real physical and emotional pain.

It was my rheumatologist who recognized the extent of my depression, prescribed an anti-depressant and referred me to a therapist. Talk therapy helped me better handle my feelings about living with pain and other obstacles, and the medication managed the chemical part of depression. Eventually and with time, I found some clarity.

There have been other times in more than nine years of living with illness and pain that depression has gotten its clutches on me. But it was not until last summer that I had another episode of clinical depression.  I unexpectedly lost my mother in late August and that loss shook me to my very core and brought back my old friend depression with it.

Preventing Recurrent Depression

Anyone who has suffered from at least one episode of depression is at risk for another, and the risk is higher in people who have been diagnosed with clinical depression. According to a 2104 report from the University Medical Center Groningen in The Netherlands, recurrent depression is more common in people who live with pain.

The best way to treat and prevent recurrent depression, according to a discussion in the Primary Care Companion to The Journal of Clinical Psychiatry, is through maintenance therapy that includes talk therapy and medication, and where medication is decreased as the depression lessens.

Depression does not have to last forever and it doesn’t have to consume your life. But when you are dealing with the sadness, anger, grief and pain, relief seems unimaginable.  My experience with clinical recurrent depression and pain has taught me that there is always hope.  It won’t be easy, but it’s not impossible.

If you want to manage your depression and prevent it from coming back, it is important to take a proactive approach.  Here’s how:

Early Recognition. If you have been clinically depressed before, you know that depression comes and goes.  If you find you are feeling exhausted, hopeless, distressed and struggling to be productive daily, reach out to your doctor or therapist to find ways to keep symptoms from worsening.  

Learn Your Triggers. For most of us, pain is a stressor and increases the chance being depressed.  But depressed feelings and anxiety also worsen pain. Therefore, it’s important to focus on minimizing things that exacerbate pain.

Communication.  Many people with chronic pain do not reach out to their doctors because they don’t think there is anything that can be done or they feel that if their pain levels are managed, then their depression will go away. But depression doesn’t just go away and it only worsens your pain levels.  Getting treatment is the only way to a full recovery and to prevent depression from returning.

Please know you are not alone.  There are millions of people with chronic pain and clinical recurrent depression. Reach out and seek support, whether it is online, in a local community support group or from others – a pastor, a mental health professional, a friend or loved one.   Your mental health is just as important as your physical and it is important to treat it as such.

Lana Barhum lives in northeast Ohio. She is a freelance medical writer, patient advocate, legal assistant, and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, 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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

CDC Guidelines Making Opioid Problem Worse

By Gary Nations, Guest Columnist

I’m a medically retired police officer with over 22 years of service. I have been in chronic pain management for many years now and my condition will never get better.

Throughout my time dealing with workers compensation and the public employee retirement system in Mississippi, I have been examined by no less than five medical doctors. Unfortunately for me, the conclusion is my condition is progressive and will only get worse.

I’ve had four neck surgeries and one lower back surgery due to on-the-job injuries. For the past few years I have found a pain management regimen that allows me to have somewhat of a normal life, although I still experience pain 24/7. I would love to see a substance that relieved pain without the problems caused by opioid medication.

The recent upswing in deaths from opioid abuse is tragic. However, the guidelines developed by the CDC for doctors to reduce opioid dosages for pain patients like me will cause more problems than it solves.

I believe some of the actions taken so far have created a vacuum and worsened the epidemic, which I believe is about to get much bigger.  Some people are going to abuse some type of substance no matter what. That’s an unfortunate fact that cannot be stopped.

Cutting the dose of medication for people in my position who need it will force them to violate the law to maintain their level of pain management and quality of life.

GARY NATIONS

This could prove a disaster, as we know many street drugs contain powerful opioids such as fentanyl, which the DEA has been very unsuccessful in stopping. Some of these street drugs are counterfeit. They appear to be a medication that a doctor would prescribe, yet they contain other drugs that cause people to overdose and die. From what I read and understand, this is what happened to the entertainer Prince. Some patients may also tire of the constant pain and commit suicide with street drugs.

The Declaration of Independence endows each citizen the right to life, liberty and the pursuit of happiness. I believe the CDC’s attempt to curb the opioid overdose and death rate is very noble. However, I also believe in the long run it will violate citizens’ rights, do much more harm than good and end up in the civil courts. As I’m sure you are aware, in some cases large sums of money are paid out each year in legal cases for “pain and suffering.”

There is no way the CDC can tell what medication and how much medication I or anyone else needs to attempt to maintain their current level of activity, quality of life and pursuit of happiness.  Only a qualified physician with medical training, medical records and medical images can understand what a patient may or may not need. The CDC needs to remember there are many people with very legitimate needs for these controlled substances. 

Last year was the first time in over ten years I could enjoy hunting and fishing again. I became active enough that I went from 255 pounds down to 215 pounds. I started feeling better and asked my doctor to drop my “breakthrough” pain meds from 120 to 90 per month. I’ve since realized I really need about 100 per month, but I get by.

The key here is I volunteered to stop taking 30 pills per month. Yes, my doctor was surprised.  However, because of rule changes, I can’t get my pain meds from that doctor anymore. I have to drive one hour each way to a pain management doctor to get my meds now. The long drive is very painful and the cost is higher.

Cutting my current pain management regimen will result in me being in more pain than I am now. It will cause me to be unable to exercise my right to hunt and fish. It will cause me to be unable to do yard work, such as mowing the lawn. Not being able to mow the lawn will result in an additional expense of $80 to $100 per month during the warm weather months.

It will cause me to once again be unable to travel and engage in some aspects of the only hobby I can currently enjoy, amateur radio. In other words, much of my liberty will be taken and my quality of life heavily impacted. My only income is Mississippi Public Employees Retirement System disability payments. Some citizens that are currently able to work with proper pain management may also have to seek disability if their doses are cut.

As I stated, I believe the effort to stop drug abuse and addiction is very noble. However, the route to solving this opioid problem should not include violating the rights of our disabled citizens or cause some patients to become criminals while trying to maintain what little normalcy and quality of life they have now.

I’m seeking your help to stop the CDC from punishing citizens that need to be on long term pain management and to get the CDC to reevaluate how it is handling a very important problem. I believe it’s time for someone to help us by filing for an injunction or a class action lawsuit to stop this craziness.

Gary Nations lives in Mississippi.

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Pain Mismanagement

By Jillian Drexler, Guest Columnist

I’ve been going to the same pain management doctor for over 8 months. While at these appointments, I see the physician assistant (PA) far more often than I see the doctor.

The PA is a very unpleasant person and lacks basic compassion and bedside manner. At an appointment last year, I was crying because of my pain and lack of sleep, and she couldn’t even be bothered to hand me a tissue. She was just more of her typical overbearing, sarcastic self.

Since I’ve been going there, I’ve been prescribed tramadol (which I’m allergic to), Lyrica (causes my wrists and ankles to swell and my pain to worsen), compound cream, lidocaine patches, Flector patches and a TENS unit. I’ve also had a few injections, with the most recent ones causing severe adverse effects.

They would have a better idea of what medications work and don’t work for me had they bothered to read the medication genetic testing report my primary care physician ordered. But, the pain management doctor turned down making copies on two occasions. They finally made a copy when I asked a medical assistant instead of the doctor or PA to make copies.

They’ve asked me more than once what opioids have worked for me in the past. I tell them and also explain that these medications have only been prescribed in the ER and after surgeries. Either way, I’m still denied the opioids I know can help alleviate some of my pain and improve my quality of life.

I’ve passed their drug tests and jumped through their hoops, only to get nothing in return but treatments that don’t work. On one occasion, the PA told me she didn’t know what I expected her to do about my fibromyalgia because that wasn’t her “baby.”

JILLIAN DREXLER

Often, they fail to realize I’m not just a patient, but a paying customer. And a very unhappy one, too. They don’t care though.

Patients are told they should play an active role in their treatment, but when we do, it doesn’t seem to matter. Nothing changes. We're perceived as drug seekers or told we’re exhibiting drug seeking behavior. It could never be that we’re in legitimate pain and hoping for relief.

I don’t ask for much from my medical team other than respect, answers and help with an improved quality of life. I’m 33 years old and this life wracked with pain isn’t living. I’m simply existing and missing out on so much in life. I’ve lost my ability to work, provide for my family and spend quality time with them.

I recently was denied for disability again. I wonder if the government ever considered just how many of us are forced to stop working because our pain medications were reduced or stopped entirely.

The CDC should have come up with something for us before putting their guidelines in place. It’s wrong and unfair that we are being punished for the actions of the guilty few. Because of this, the issue becomes an “us vs. them” situation. Addicts need love and treatment, just like any other patient, but while lifesaving measures are in place for them, we’re left feeling slighted and wondering if anyone cares about us. Already, far too many chronic pain patients have lost hope and feel there is no other option but to end their lives.

My governor recently announced plans to limit opioid prescriptions for acute pain to 7 days. Gov. John Kasich said it won’t effect chronic pain patients, but I tend to doubt that. I mean, how could it not? Ohio is considered one of the hardest hit states in the heroin and opioid epidemic.

Last September, a new state law was approved that allows doctors to prescribe medical marijuana to patients with qualifying medical conditions. The program won’t be in operation until September 2018.

If we’re going through such a difficult time getting opioids, I can just imagine how difficult it will be getting a medical marijuana card and then the marijuana itself. If a pain patient is still working, many would risk losing their jobs because some employers have publicly said they will have no tolerance for marijuana use for any reason.

Ultimately, there’s no win here for chronic pain patients, not as this time. We must stick together and fight for our right to a life of reduced pain. Respect, improved quality of life, and effective treatment aren’t too much to ask for. They wouldn’t take blood pressure medication away from someone who has hypertension or insulin from a diabetic, so why deny or take medications away from pain patients?

Jillian Drexler is from Cincinnati, Ohio. She lives with fibromyalgia, bulging and herniated discs in her neck and back, migraines, sciatica, and post tubal ligation syndrome (PTLS).

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why We Must Ditch the Term 'Chronic Pain'

By Janice Reynolds, Guest Columnist

The term “chronic pain” is being used as a weapon against people living in pain.  People who are prejudiced and biased against pain sufferers often use it in derogatory way, to imply their pain is not that bad or that they are even lying about it.

Over 15 years ago, some members of the American Society for Pain Management Nursing, including myself, recognized the negative connotation of the term and attempted to change it to “persistent pain,” obviously without much success. 

“Chronic” only means a time frame of 3 months or more. No one knows how it became a term to mean a “type” of pain. 

When I was an oncology nurse, I did some research on the biological differences between cancer pain and “non-cancer” pain, and didn’t find any. No one knew how the differentiation came to be. There was no evidence to support it.

Chronic pain does not exist as an entity; it applies to many different types of pain syndromes and diseases. So when someone says there is no evidence to support using opioids for chronic pain or that opioids make chronic pain worse, these are outright lies. Or if you want to be kinder, false assumptions based on erroneous evidence. Research based on false principles.

One of the things the so-called opioid epidemic has done is given some validity to these prejudices and biases to justify the war on people in pain. The abuse by politicians and the media is too complicated to go into here, but when you have someone like Sen. Susan Collins of Maine saying pain management is important for cancer patients or end-of-life care, but addiction is a bigger problem for chronic pain patients, then it is obvious that “chronic pain” is being used as a bludgeon.

What is one thing people in pain, advocates and providers can do?

Stop using the term “chronic pain” and start using the condition or disease that causes the pain.

I have persistent post craniotomy pain, for example. You might have pain from fibromyalgia. Or pain from arachnoiditis, rheumatoid arthritis, shingles, migraine, peripheral neuropathy, Ehlers-Danlos syndrome, and so on.  Be specific. There are many reasons for back pain, neuropathies and other syndromes.

When we talk or write about persistent pain, use the terms “people in pain” or “people living in pain.” I want organizations to throw the term “chronic pain” out as well. How much more supportive is the name “American Association for People in Pain” as opposed to the American Chronic Pain Association?

This will be a difficult paradigm to change, especially for professionals and journalists. But without change, “chronic pain” will continue to be used as a tool for hate.  

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking with pain. 

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 to Advocate for 'Generation P'

By Barby Ingle, Columnist

There is so much talk about Generation X, Y and now Z, it got me thinking about what generation I belong to. There are psychological, cultural and sociological dimensions to identifying with a generation.

I decided that I am with Generation P -- the “P” standing for chronic pain. Typically, a generation is defined by being born during a specific time period, but pain affects all ages without discrimination. Therefore, you belong to Generation P if you are living with daily pain, no matter what your age.

What does it mean to be part of Generation P? When you become a chronic pain patient, you begin to be left behind by your old generation and become part of a new generation where the main theme is survival. We have to focus on recreating a new life, instead of living the one we had. Our attitudes and important factors in life are reevaluated and change. We need to learn how to navigate through the healthcare system, understanding that there are not many who are treated properly when it comes to pain care.

Being a successful contributor to Generation P starts with self-advocacy. If we don’t stand up for ourselves, things won’t get better. We must learn how to change policy, change laws, change the service system we have access to, and change public attitudes.

I have seen many people with chronic pain fight for their right to fully participate in all aspects of life, despite their disabilities. I have had to do this myself. This is where our awakening begins.

We must learn to put in great effort and use our energy pennies wisely to get the care that we need. We use problem solving to get through our days, and once we learn to do that effectively, we can begin to advocate for others having similar troubles. We must work to improve pain care, protect rights and stop discrimination. We must stop abusive treatment and make pain care more fair, equal and humane. We can do this by removing barriers that prevent access to pain care, so we can better participate in society and have our voice heard.

We must be sensitive and understanding to others who are trying to overcome the challenges of living with chronic pain. We need to be persistent in our search for good care and determined that our efforts will make progress despite setbacks.  

Advocates should listen and be objective. This is the most effective way to get the care we need. We must recognize our own prejudices and tendencies. We shouldn’t second guess or judge what someone else’s pain experience is. We need to trust their judgement. If something works for them but not us, that’s okay because we will continue the search to find what works for us.

How effective we are depends on how we handle our situations and challenges. We must constantly reevaluate our situations and attitude. We must be polite but firm. We must learn to work with others without controlling them. We must also pay attention to privacy and confidentiality for others so we can maintain credibility.

When it comes to advocacy, we recognize that there are millions of ways to do it, but that we all have the same hope and that when we use our voice for good we not only help Generation P, but also those who are Generation X, Y, and Z. One day they too will become members of Generation P.

Generation P is the now of pain care. It is up to us to create social change, carve a path for better and timely pain care, and increase awareness about chronic pain.

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.

AARP’s ‘Opioid Menace’ a Disservice to Pain Patients

(Editor’s note: The American Association of Retired Persons (AARP) recently published a series of special reports entitled "The Opioid Menace!"

The series focuses on the abuse of pain medication, claiming that many older Americans have become “new opioid dealers” who are fueling the opioid crisis by “selling their prescription painkillers to drug pushers.” Doctors are also blamed for the “sin of overprescription.”

PNN reader Rochelle Odell was upset about the lack of balance in the series, and sent this letter to AARP.)

Dear AARP Editor:

I have been a member of AARP since I turned 50, due to disability.  I suffer from Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD).  Like many long term CRPS patients, my spine is a mess.

I was appalled when I read your article on "The Opioid Menace.” Excuse me, but what a crock of you know what. Your organization has done a great disservice to the tens of millions of Americans who live with chronic pain, including many who are over the age of 50.

Did your reporters contact any of the major pain organizations? I doubt it, from reading your article. I am going to have to spend some time researching the correct numbers, but I believe opioid addiction among chronic/intractable pain patients is less than 5%, a far lower number than you referenced.

When the CDC came out with their opioid guidelines in 2016, which by the way were just that -- guidelines for primary care physicians only -- my medications were stopped, like so many across the country, cold turkey no less. And I had been on pain medication for over 20 years.

My first treating physician didn't believe in pain medication unless absolutely necessary, so I underwent painful blocks for both upper and lower extremities, along with the implant of three different types of spinal cord stimulators and two pain pumps. The first one never worked and the second one, my body rejected.

I was poked and prodded, and my spine underwent such an assault that -- had I known then what I know now, I never would have agreed to.

I was given a variety of medications other than opioids, which never worked or caused side effects so severe, they certainly weren't worth taking. You name it, it was done to me before I was finally placed on an opioid regime only.

ROCHELLE ODELL

Now that I am "opioid free," my pain is off the scale. I no longer function. I have been house/bed bound since December. My vehicle sits dead in the garage. I have become too ill to even go to the doctor.

I contacted my Medicare Advantage insurance company for assistance due to my circumstances, but their willingness to help ended there.  See, I am supposed to find the energy to take a shower, get dressed, ride in a vehicle to a new primary care physician, then wait in the office and hope the physician can assist me. I can barely make it to the bathroom, let alone venture to a doctor's office. To top it off, my voice is now affected and I no longer talk on the phone.

I am but one among many across our nation, who has been adversely affected by these guidelines and false statistics. Your organization needs to research, then report the other side of the coin. Those of us who have lost the ability to function or live in severe pain, non-stop 24/7, 365 days a year, are suffering. Tell our story, please! 

Just because a person dies with prescription drugs in their system, does not mean they died of an overdose. It just means they had drugs in their system at the time of death. 

A chronic pain patient sees their pain management physician on a regular basis, usually monthly. We dutifully sign pain contracts and pee into the cup. It can be so degrading, but if we do not, we are labeled non-compliant and dropped.

A chronic pain patient guards their pain medication to a fault, they are too valuable for our survival to risk losing or selling. Yes, there are a few, very few, who use too many per month or divert them for money, but a good pain physician keeps track of that abuse, as do pharmacies.

Do illicit drug users do this? No, they only look forward to their next high. A chronic pain patient never gets high off their medication, their pain is that overwhelming. Illicit drug users steal and prostitute themselves to feed their habit. Unfortunately, even older Americans who have had their medications stopped or significantly reduced are now forced to search on the streets/internet for drugs for their pain.

Believe me, if I had the money and knew where to look, I might be tempted to do the same. But living on a fixed income precludes anything illegal. We didn't ask for these painful diseases, and we didn't ask that our careers be halted in our 40's and 50's in one fell swoop. If we could give our diseases back, we would in a heartbeat, including the drugs needed just to function.

Another issue is the fact many illicit drug users use heroin laced with fentanyl, along with mixing alcohol to obtain their high. Or the growing number of illicit drug factories that have been raided within the past year. Drug dealers are churning out hundreds of thousands of counterfeit fentanyl/oxycodone pills. Pill presses are shipped from China and the drug cartels south of the border, along with the illicit drugs required to make these pills. Did your reporters research this? No.

Living alone at 70 and not functioning has been a real test. Thankfully, I do my food shopping online, so my dog and I don't starve. It isn't the same as doing my own shopping, but I can purchase food including frozen and fresh.  I pay my neighbors a small amount to pull the weeds from my yard and pick up my dog's waste. But I am very close to just walking away from a home I have lived in for fifteen years, that's how severe my situation has become and I am not unique.

You only interviewed a very tiny group of people who claim to have gotten hooked on prescription drugs. AARP has overlooked the real problem, which is illicit drugs, not prescription drugs. I don't know where your reporters obtained their statistics, but they are far off base.

Like many elected officials and government regulators, AARP has grossly overlooked a significant number of people adversely affected by this false information. I could go on and on about the damage your article and incorrect information has caused to chronic pain patients. Quite frankly, I expected better from AARP.

Rochelle Odell lives in California.

To see the AARP series and watch a video version, click here.

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: Living on Hope

By Carol Levy, Columnist

"Never lose hope. Storms make people stronger and never last forever." Roy T. Bennett 

"He that lives upon hope will die fasting." Benjamin Franklin

"Hope is the thing with feathers That perches in the soul And sings the tune without the words And never stops at all."  Emily Dickinson

I could go on and on. Why am I in this mood?

I have an appointment tomorrow with a new doctor. He spoke at our trigeminal neuralgia support group some weeks back, so I know he understands the condition and the pain.

He also specializes in neuropathic pain. This is a source of pain that occurs as a result of diseases, lesions or injuries to the nervous system.

As a result of the many neurosurgical interventions I have had, this -- as opposed to “merely” trigeminal neuralgia -- appears to be the cause of my pain.

I was very lucky in that the worst of my trigeminal neuralgia pain -- constant, triggered and spontaneous – suddenly went into remission. Unfortunately, the eye pain that keeps me in pain and disabled remains.

Almost every doctor I have seen -- neurosurgeons, neurologists, ophthalmologists and neuro-opthalmologists -- have tended to have the same response to my plaintive cry: "What causes this pain when I use my eyes? Why do I still have it? Isn't there anything that can be done?”  

Shoulders are shrugged, eyebrows raised. “I dunno” is the usual response.

I have heard that answer too many times to count. I know this is the standard answer. I also know it is probably the true answer.

And yet.

I am anxious about my appointment tomorrow. Maybe this doctor, maybe he will be the one who finally says, “Yes. This is why your eye pain persists. Here is a prescription (or a treatment or heck, even a surgery, I'm game if it is a real answer). This will fix it.”

In my heart and mind, I know I am probably setting myself up for another disappointment.

But how do you stop hope? Especially when hope is all that keeps you going. Maybe today, maybe tomorrow. Maybe someday.  Maybe. Maybe. Maybe my pain will stop or be reduced to the level where I can work and be out in the world for as long and as much as I want. Dickinson said it. Hope "never stops at all.”

Bennett is wrong. My storm of living with pain has probably made me stronger. More resilient and more dogged, but it has lasted for 39 years. My storm of pain is a forever storm. Maybe it is time to let the hope go.

Franklin may have said it best, living on hope means that I die fasting and hungry. But what choice do I have?  Giving up hope would mean giving up the one thing that keeps me going. Even if the hope is false.

And who knows? Maybe tomorrow's doctor will have the magic pill.

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.

Walk a Mile in My Shoes Before You Limit Opioids

By Craig Bowden, Guest Columnist

I am 46 years old and have had a very good life until the last few years, when chronic pain stole all of my professional aspirations, and put the love of my family and my wife to an extreme test.

For the last 25 years I've been in the communications industry, mostly involved with fiber optic technology. I also worked in a metal casting foundry, which is when I had a severe motorcycle accident that gave me a concussion, shattered my right arm at the elbow, and left me with many small fractures and bone chips in my wrists.

The pain was intense, but I never complained about it. I followed doctor’s orders in terms of medications and physical therapy, and it still required 5 surgeries before my right arm had some limited function. I never focused on the pain, I focused on recovery. Although this happened over 20 years ago, I still live with the pain from those injuries every day.

Needless to say, my foundry days were done and I needed to find a career that would work with my limited right arm. 

CRAIG BOWDEN

Over the years, I've been involved in a number of other accidents, including a head-on crash at an intersection where the oncoming driver was trying to beat a red light, swerved to miss another vehicle and hit my car head on at 60 mph. That crash broke two of my ribs and smashed my knees up pretty bad.

Years later, I broke my left wrist in a slip/fall accident. It happened so fast and broke my wrist in the worst possible way. Fortunately, I was able to get patched up again.

The reason I share these stories is because I want you to understand that I'm not an addict, nor will I ever be. Pain medication was something I never abused. I only needed relief to get a few hours of sleep or to spend time with my kids. I used pain medication sparingly because I didn't like the way it made me feel in the head. I mostly used ice and survived just fine.

But bigger problems were on the way.

As years passed, I became somewhat of an expert in the field of fiber optics. I traveled and worked with many companies across the U.S. I also started my own fiber optic business in 2003 in my garage. It was a bumpy start, but soon we were selling over $6 million annually and facing huge opportunities. Then I hit a wall. The pain wall.

I was working on a project when I had sharp acute pain in my lower left abdomen. It was very intense, but being no stranger to pain (and surrounded by clients), I pushed through and nobody was any wiser that I was suffering. I was sweating uncontrollably, shaking all over, dizzy and even slurring some of my speech. I continued to work 3 more days before finally seeing my primary care doc.

They put me through a day’s worth of tests such as ultrasound (looking for hernia), HIDA scan (gallbladder) and others until they finally got me in for a cat scan. Bam! Bad news. I had a perforated colon that required immediate antibiotics and emergency surgery. I had been living for almost 5 days with a severe sepsis infection and everyone agreed that I was lucky to have survived. But I didn't complain about the pain.

Over the next several years, I endured 8 more abdominal surgeries, plus many other hospital admissions for strangulated bowel or bowel rest, along with countless other visits to ERs with uncontrolled pain.

As an unwanted byproduct of all these surgeries, I developed "ARD" or Adhesion Related Disorder, also known as Adhesions Disease. Adhesions are like scar tissues and can cause organs to stick together like glue. Most people develop some form of adhesion post-surgery, but for some reason my body just keeps churning out adhesions like an assembly line.

Many of the surgeries I've had were exploratory, or in other words: "We don't know what's causing all the pain so we need to look around.” Once the doctors cut me open, I'd be on the operating table for 10-12 hours while they cut away the fibrous adhesions. I became very aware of the early warning signs of a blockage or strangulated bowel.

I am very pragmatic when it comes to pain. I believe that a "1" on the pain scale is when you stub your toe on a table leg and a "10" is the point at which I would black out from excessive pain (which has happened to me twice). I've had numerous instances of a 9/10 pain scale and would be screaming uncontrollably in the ER.

Many of my hospital visits helped get the pain under control, but when I went home, I used pain drugs sparingly. I always recovered from the surgeries in 40 to 60 days and went right back to working 80-100 hour a week. I never gave a thought to the pain meds once I was up and running again.

Who are these people who think using oxycodone for pain control is a gateway to drug abuse? Using their logic, I should be a serious heroin and crack abuser by now, but I've never even tried illegal drugs.

In 2015, my surgeon put me on high doses of fentanyl and oxycodone, enough to kill a "normal" person from respiratory failure.  Two years later I’m still alive, have successfully weaned myself to a lower dose and I'm not an addict. So my primary care physician and my pharmacy shouldn't treat me like one! But the CDC guidelines have everyone under a microscope, so they're cutting back access to people in genuine pain. 

I only have 6 feet of small intestine remaining, which is inside a dense ball of adhesions. Operating on it would be very risky and could cause pancreatitis. There is not enough small bowel to properly absorb food, so I take many vitamins and supplements as well as motility and pain meds. I had to sell my company, which was heartbreaking, but I simply couldn't run it anymore. My wife stayed with me 24 hours a day, every day, while I was hospitalized.

I now attend a specialty clinic that uses a blend of massage, myofacial holds, physical therapy and strong palpation on the abdomen to take down adhesions and loosen my tissues so I can move. I feel certain this amazing treatment has kept me out of surgery. In terms of pain, my very best day is a 3 or 4 on the pain scale and my worst can spike to 7 or 8 at times.

I’ve thought about ending things with a bullet to the head countless times. But I just can't insult my wife, kids, family and friends who stuck with me through all this by taking the easy way out.

Chronic pain patients like myself should not be vilified as criminals, but the CDC guidelines have set in motion a vast effort to control the flow of opioids. Doctors are leery to prescribe pain medication, pharmacists don't want to fill the scripts and they all look at patients with a glare of mistrust.

I'd give ANYTHING to give real, severe and unrelenting pain to some of these CDC bureaucrats and see how they tolerate it like I do every day. They should walk a mile in my shoes first.

Craig Bowden lives in Florida with his family.

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 4 A’s That Can Help Relieve Chronic Pain

By Barby Ingle, Columnist  

I often hear from pain patients who say that they have tried everything to help lower or relieve their pain levels. Many times what they mean is that their healthcare provider did all they could, and they got minimal or no relief and gave up.

We must realize that providers don’t have all the answers, insurance doesn’t cover all the options that may help, and there are new treatments and therapies that may lower your pain. Many of these treatment modalities are not covered by insurance – so providers may not even offer them. Access to them is limited unless you know your options and create a plan to get them.

Many of these treatment modalities are not covered by insurance – so providers may not even offer them. Access to them is limited unless you know your options and create a plan to get them.

In my next few columns I’m going to focus on some of these treatments, starting with the 4 A’s: acupressure, acupuncture, aromatherapy and art therapy.  

Acupressure

When it comes to acupressure, you can go to a practitioner or you can learn to do the techniques on yourself at home for free. The practitioner works with your pressure points, which are known as meridians. Putting pressure on these meridian points can reduce muscle tension, improve circulation and stimulate the release of endorphins, which are natural pain relievers. All can help lower pain levels.

They are also said to work on your body’s energy field, mind, emotions and spirit. A session with a practitioner lasts about an hour, but you can learn the techniques and do them on your own or with a caregiver.

During the session, you’ll usually lay on a flat comfortable massage table or bed. Some of the pressure points in your hands can be treated while sitting and watching a movie or TV show.

The pressure point that works best for me to calm my mind, improve memory, relieve stress, lower fatigue, and reduce my migraines and insomnia is known as the Third Eye Acupressure point.

Acupuncture

Acupuncture is a little more invasive than acupressure. Due to having a small nerve fiber disease, it is not the best option for me, but I know others who love it.

Acupuncture practitioners insert very small needles through your skin at acupuncture/meridian points. Some potential side effects can be temporary soreness, minor bleeding or bruising at the needle sites. If the needle is pushed in too deeply, it can damage muscles and organs. These are rare complication, but make sure you use an experienced practitioner.

Lower back pain is the number one reason people seek this form of treatment, and there are hundreds of clinical studies that show acupuncture can be beneficial for musculoskeletal issues like back and neck pain.

It can also help with nausea, migraines, depression, anxiety and insomnia, all challenges we can face as pain patients. There is promising evidence acupuncture helps with arthritis, spinal stenosis and inflammation.

Although relief is typically short-term for acupuncture and many other treatments, it can still give the patient back some quality of life.

Aromatherapy

Have you ever smelled something that took you back to a time and place when good things happened in your life? Like apple pie reminding you of July 4th celebrations as a child? Or pumpkin pie bringing back memories of Thanksgiving dinner? Or good times raking up the leaves in the yard?

Aromatherapy can help you get in a good mood for meditation. I use it for migraines and taking the edge off my pain levels. You can use essential oils that help with specific challenges you are facing. You just massage them into your skin or put a dab on your temples. I also use a scented light in my house to keep positive vibes flowing.

This type of therapy has been around for many years, but started to become popular in the 1980’s. Lotions, candles, oils and teas can fill your house with good smells and memories to take the edge off your pain levels. Some promote physical healing, emotional healing, relaxation, and calming properties.

When using a practitioner who combines massage with aromatherapy, the session lasts about an hour and usually involves essential oils. This way your skin absorbs the oils and you also breathe their aroma at the same time. Plus, you experience the physical therapy of the massage itself.

Evidence as to how aromatherapy works is not entirely clear. But it provides relief for many different conditions, including psoriasis, rheumatoid arthritis, cancer pain, headaches, itching, insomnia, constipation, anxiety, and agitation. Studies have shown that chronic pain patients require fewer pain medications when they use aromatherapy.

Aromatherapy products can be inexpensive and are more attainable for low income and underinsured patients.

Art Therapy

There are many forms of art therapy, from music, dancing and writing to painting, sculpting and even just watching someone else perform. One of my favorites for dystonia is working on impossible puzzles.

Art therapy can enhance one’s mood, improve emotions, and reduce stress and depression. If we can get these challenges under control, then the stress hormones and chemicals they produce in our body that aggravate pain can be lessened.

Art therapy can also help heal emotional injuries. Think of it as a form of mindfulness where we develop our capacity for self-reflection, which can alter behavior and negative thinking patterns. These forms of expression can be done at home, while on a car ride, in a quiet place during a trip or even at a rock concert as you dance and sway to the beat of the music.

Like aromatherapy, music can help bring back positive memories and get our minds off pain. I believe music is the most accessible and productive art therapy for lowering pain levels.

These techniques may be strange to you, but remember to keep an open mind and realize that there is more you can do in between doctors’ appointments to make your days better and more purposeful.

Whether you choose any of these four treatment modalities or find another that is right for you, keep looking for those things in your life that you have control over and have access to. Find ways to make the most out of life despite the physical and mental pain you may be experiencing.

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.

An Epidemic of Undertreated Chronic Pain

By Roger Chriss, Columnist

The undertreatment of chronic pain is fast becoming another “epidemic” in America.  As the CDC guidelines, state laws and regulations, and federal agencies like the DEA push to reduce opioid prescribing, chronic pain patients are being forced to reduce dosages, change medications or make do without pain medication at all.

It may be difficult to believe that chronic pain is undertreated. After all, media reports on the so-called opioid epidemic make it seem like opioids are everywhere.

“Before launching into hysteria that the recent, small drops in opioid prescribing reflect a ‘war on pain patients,’ we should recognize that U.S. consumption dwarfs that of other developed countries,” Keith Humphreys, PhD, a professor of psychiatry at Stanford University, wrote in The Washington Post.

But the focus should not be on overall consumption. It should be on whether opioid medications for chronic pain actually work.  And they do, for many patients.

“Many patients currently receiving long-term opioids were started when opioids were still considered a viable treatment option and if satisfied with their pain control and using their medications appropriately should not be unilaterally compelled to wean off opioids,” Kurt Kroenke, MD, and co-author Andrea Cheville, MD, recently wrote in JAMA

But tragically, this is already happening. Painful conditions are increasingly undertreated.

Nursing 2017 notes that “many patients with sickle cell disease are undertreated and labeled as drug seekers due to their chronic pain.”

A 2016 article in Pain Research and Management found that “painful diabetic neuropathy is poorly assessed for and treated in primary care.”

Reuters Health recently reported that in a large study of 1.4 million nursing home residents, roughly two out of five had intermittent or chronic pain. “Among the residents with persistent pain, about 6 percent received no medication at all and another 32 percent didn’t get enough drugs to properly address their symptoms,” Reuters said.

Fox News reported on a nationwide survey that found 34 percent of physicians believe restricting opioid prescribing may actually be hurting people with chronic pain.

"If you open the discussion publicly, you see the carnage that is happening to people in pain because of these rules,” David Nagel, MD, a pain management specialist in New Hampshire told WMUR-TV.

Moreover, a recent survey of over 3,000 pain patients by PNN and iPain found that 23% reported they were no longer receiving opioid prescriptions and 47% were on a lower dose. Most significantly, 84% reported having more pain and a reduced quality of life.

Demonizing opioids can endanger lives. A Utah woman said her husband suffered from severe cancer pain, but was reluctant to take opioids because he didn’t want doctors “prescribing heroin” to him. He finally relented and started taking opioids when his pain became unbearable.

“My husband would have died from pain without opioids. The same doses that would kill a healthy person were life-saving for him,” Julieann Selden wrote in an op-ed in the Salt Lake Tribune. "The increasingly prevalent anti-opioid rhetoric in Utah, while helpful to some, damages others. The addiction concerns are justified but should be balanced with an emphasis on individualized medical care."

“Our state and federal representatives must consider the needs of the people who use opiates as prescribed when enacting laws or rules for doctors to follow,” Dennis Conklin wrote in a letter to the Chicago Tribune. “People who suffer from severe chronic pain must be allowed access to opiates in order to continue to maintain a reasonable quality of life.”

But this lifeline is under attack. Unnecessarily and inappropriately. Chronic pain patients have a low risk of developing a substance use disorder, yet federal and state opioid guidelines, along with close scrutiny of doctors by the DEA, are having a chilling effect. Widespread fear and confusion about the overdose epidemic and opioid medications are causing chronic pain conditions to be poorly treated.

Chronic pain patients rely on opioid medications to maintain a reasonable quality of life in the same way that people with epilepsy rely on anti-seizure medication or people with low thyroid function rely on thyroid replacement pills. So if they seem defensive about their medication — the “hysteria” that Dr. Humphries is so quick to dismiss — it’s only because they do not want to lose their last line of defense against pain.

The current backlash against opioids for pain management must end before we have another epidemic on our hands.

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.