A Pained Life: Hold On Hope

By Carol Levy, PNN Columnist

If I didn’t know better, I would think the lyrics from Peter Allen’s 1976 song “Taught by Experts” were specifically for the chronic pain community:

I've been taught by experts in the art of cruelty
Now I'm giving lessons free
All it takes is three
I'll teach you to make friends with pain
Lesson number one
No it's not much fun
Never was much fun

That song feels like the story of my life, at least my life since the pain started.

After my last surgery, the doctor took photos of my shaved head and of the scars remaining from the 12 other neurosurgeries I’ve had for trigeminal neuralgia. Every one of them left visible scars, at least until my hair grew back.

Surgeries also leave invisible scars in our minds and souls. I would venture to say that, in one way or another, many of us have some level of post-traumatic stress disorder that will continue for as long as we have pain.

Recently I finished reading a book on chronic pain. The author gave many exercises and suggestions for ways to deal with pain. The exercises were geared towards ways to change how we think.  Many of the suggestions seemed to be variants of “Don't worry. Be happy.”

There must be a middle ground between “My life is cruel because of pain and I am consumed by it.” -- a thought that is hurtful and soul crushing -- and “I'll pretend it isn’t there and smile.” -- a falsehood that is equally destructive.

What is it that tethers us?

I think it is hope. Hope that the pain will get better, hope that a better, newer, easier treatment will be found. Or better yet, a cure.

And hope that in the interim we will still have access to the treatments and providers that helped us. 

Maybe these lyrics from “Hold on Hope” by Guided by Voices expresses it better than I can.

Every street is dark and folding out mysteriously
Well that’s the chance we take
To be always working, reaching out

For a hand that we can't see
Everybody's got to hold on hope
It's the last thing that's holding me

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.

Positivity Is My Survival Technique

By Mia Maysack, Guest Columnist

As a young girl, swimming and diving were my main passions in life. I spent every day at our neighborhood pool, from the moment they opened it until the second they closed -- even on rainy days.  I figured I was already wet and there was a great group of lifeguards. I didn't have a care in the world.

All of that changed at the age of 10 when I developed “swimmer’s ear” -- an infection of the ear canal that is often brought on by water that remains in the ear after swimming.  The water creates a moist environment that aids bacterial growth.  

After a routine visit for ear drops at a local clinic, I returned home to rest. Within a couple hours, I awoke from a nap feeling stiff from my neck on down. It was as if I were suddenly paralyzed. I was terrified. The next few moments felt like an eternity. If my mother had not come in to check on me, I could have died right there in my childhood bed.  

My mom knew something was wrong with her young and healthy daughter, and it wasn't much longer before we were on our way to the hospital. During the ride, I remember feeling the head pain for the very first time.

I also recall feeling upset with my father, because on the way he had all the windows down and I felt so cold.  He also had his rock music blasting, which angered me considering how much head pain I was feeling. I did not realize it then, but he was only doing his best to keep me awake - as I was slipping into a coma. 

After arriving at the hospital in a wheelchair, I threw up all over my poor dad. After profusely apologizing, I fell into a deep sleep. Days passed without anyone having any idea what was going on. When my desperate mother inquired, she was told, "Every moment Mia survives is a miracle."

Eventually it was discovered my body was fighting a grave infection and emergency surgery was required. The bacteria was harbored within the mastoid bone of my left ear. It should have been a relatively quick fix, but during the procedure the surgeons found the bone so infected that it crumbled into tiny pieces. It required hours of focused and careful work. 

After sewing my head shut, I was left to rest in the intensive care unit. It was then that left side of my face began oddly twitching. My family had been through the ringer at this point, but my mother did not leave my side. She noticed this change and called for immediate attention, fearing I was having a stroke or seizure.

MIA MAYSACK

It turned out there had been bacteria left behind and it was now attacking my facial nerves, which demanded a second emergency surgery. 

This rare experience left me with deafness in my left ear, partial facial paralysis that has turned into permanent facial synkinesis, as well as chronic migraines and daily cluster headaches. Considering the odds I was up against, I often refer to myself as walking miracle. Bacterial meningitis is swift, sometimes deadly and often results in limb removal. So although my entire life had been turned upside down, I knew I was lucky to be alive. 

Although I go through life with a positive and gratitude attitude, my head has been hurting every single day since this happened. We had no way of knowing back then that I would live with the consequences of that experience forever. I am thankful to have learned the concept of mortality at a very young age, as that helped to cultivate core values, morals and choices for myself  -- which kept me out of a lot of unnecessary trouble other kids my age were getting into. 

Upon returning to school, none of my friends wanted anything to do with me. Instead of checking in and asking what happened to me, untrue stories circulated and the teasing began. Children can be downright cruel in middle school and high school, and because I now looked different than everyone else, I was an easy target. I would spend my recess inside the nurse’s office, working with her on facial retraining exercises. I used to glue or tape my eye closed at night, otherwise it would have essentially dried out and I may have suffered vision loss or lost the eye altogether. 

Accepting My Differences

I have come a long way since then with overall acceptance and I embrace my differences because they represent my fight for life, health and well-being. 

Over all these years, I have tried just about every treatment for my pain that anyone could think of. Medications further complicated things, while neglecting to help with the underlying issues.  Diet changes made no difference.  Nor did biofeedback, acupuncture, Botox, dry needling, trigger point injections, herbal remedies, massage, and chiropractic. The list goes on and on. 

I feel a deeply rooted disappointment with our current healthcare system. We have made many powerful discoveries and improvements in medicine, and the breakthroughs are tremendous for many.  I have come across some great personnel within the medical community, however they are few and far between. 

Due to my illness being invisible, I am often either treated as though I am overreacting, flat out lying, drug seeking or being dramatic. At one point I was banned from a pain clinic for missing a few appointments  because I did not feel safe enough to drive myself.

There is a common attitude toward chronically ill patients, that we are not fully taking responsibility for ourselves or our ailments, and a general opinion within society that we should pop an aspirin and shut up already. If only it were that easy or simple. I wouldn't be here writing this if it was. 

Living each day with head pain, among other discomforts, gets in the way of me being able to think straight and living the life I used to envision for myself.  Often overlooked or flat out disregarded is the constant losses the chronically ill are forced to navigate through.

For example, I worked very hard to earn a job at the very same hospital that saved my life, but ultimately had to step down because they were unwilling to accommodate my need to work fewer hours. I've also had to drop out of college multiple times because they are not set up to cater to the needs of those who suffer from debilitating pain. 

Within the past year and a half, my daily pain scale number of 5/6 has escalated to a 7/8, which has been devastating. Due to high demand, getting in to be seen at a pain clinic (if you are fortunate enough to have one in your area) can take months. When you've been stuck in a cluster headache for 90+ days, it's only natural to feel isolated and alone. There are times I have asked myself how or if I am able to go on like this. 

Our health is one of the most important things in life. That truth is what led me to pursue patient advocacy so passionately. I began witnessing other people getting treated the same way that I was, and it sparked a fire to advocate for the sake of them as well. 

I am living proof that we are far more than any diagnosis. Positivity has become a survival technique as well as a coping mechanism for me. It has led me down a path of holistic wellness through mindfulness and the humble reminder that -- although things could definitely be better -- they could have been much worse.  

Mia Maysack lives in Wisconsin. Mia is a proud supporter of the Alliance for Headache Disorders Advocacy and was recently honored by the U.S. Pain Foundation as its “Pain Warrior of the Month.”

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.

An Open Letter to Attorney General Jeff Sessions

By Fred Brown, Guest Columnist

Dear Honorable Attorney General Jeff Sessions,

Why are there are so many federal agencies, like the CDC, DEA and Justice Department, that want to take away my opioid medication?  I have a right to be treated humanely, don’t I?

I am an American citizen who has dealt with some serious and painful medical issues. Over 20 years ago, I was referred to a board-certified pain management physician.  This was due to two failed cervical surgeries that left me with chronic back pain. I had two additional surgeries to fuse my spine after the first two operations, which only made my pain even more severe. The pain physician recommended I should begin a treatment regimen that included low doses of opioid medication.  

These medications helped me to continue working and have a certain quality of life.  I knew from discussions with my physician that, over time, I would need to increase the dose as my body would become dependent on opioids. This has been necessary and over many years these medications helped me live my life.

I have tried other medical modalities such as physical and occupational therapy, biofeedback, acupuncture, counseling, and other alternative treatments.  Further, before starting on opioids, I tried various non-narcotic medicines which did not work.    

Mr. Attorney General, earlier this year, you gave a talk in Tampa and said, “People need to take some aspirin sometimes and tough it out.” 

Perhaps if someone was experiencing mild discomfort, aspirin will work.  However, when one is living with severe chronic pain, 24-hours a day, seven days a week, they very likely need strong opioids prescribed by their physician.

Opiates help patients like me get relief from severe pain. They do not take away the pain, but they help reduce it and enable us to have some quality of life.  

ATTORNEY GENERAL JEFF SESSIONS

The “pill mills” have hurt many people, and most certainly the DEA should do everything it can to close them down.  But at the same time, certain patients must have high dosages of these medications. Each of us have a different metabolism and what may work for one person at one dose level may not work at all with another patient.  

When a government agency such as the DEA goes after physicians who are trying to help legitimate patients, without any idea of the patients’ history is and why they are on high doses, that is entirely wrong and inhumane!

Why are so many agencies, along with Congress, trying to keep these medications at lower dosages that will cause me to live with increased pain?  Does our nation intend to condemn citizens who have painful and excruciating disabilities to a life of agony?

I am aware the CDC made some serious mistakes when it released the 2016 Opioid Prescribing Guideline.  Some physicians believe the guideline is law and began to lower the doses of patients or even discharge them from their practice. It took CDC researchers years to admit they significantly inflated deaths from opioid prescriptions because they misreported deaths due to illegal fentanyl. 

Opioid prescriptions have been declining since 2011, while overdose deaths and suicides are at an all-time high!  This is not accidental.  CDC, FDA and DEA are chasing the wrong opioid epidemic and needlessly ruining lives of people in pain.

Mr. Attorney General, was our nation founded on the premise that our fellow citizens should live in chronic severe pain? I do not believe our Founding Fathers would want this. 

Fred Brown lives in central Florida. Fred is disabled because of spinal fusion with laminectomy syndrome, cervical radiculitis.  He also has severe arthritis in bilateral knees with a failed knee replacement.  In addition to pain management, Fred uses "diversion of the mind" as a way of dealing with much discomfort. 

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 New Face of the Opioid Crisis

By Pat Anson, Editor

Caylee Cresta doesn’t have any illusions about being the next Internet star or YouTube sensation. But the 23-minute video she posted on what it’s like to be a chronic pain patient during an age of opioid hysteria has become a hit in the pain community.

“This video should be made to go viral,” one fan said.

“Caylee you did an amazing, persuasive presentation. Maybe you should be a lobbyist!” another one wrote.

“Single best piece of chronic pain patient advocacy I have ever seen. Absolutely brilliant!” wrote Chuck Malinowski.

Caylee’s video is not addressed to the pain community, but to the public at large. The 26-year old Massachusetts woman with fiery red hair looks directly into the camera and earnestly asks people to set aside their misconceptions about pain, addiction and the opioid crisis.

“I do not suffer from addiction and yet stigma will tell you that I do.  And that is a myth that we are going to change,” she says. “Don’t ever brush off the plight of the chronically ill because your lives can change in an instant, just as ours have.

“The fight against opiates is an uneducated one. This is a movement that lacks understanding in its most basic form. Every lawmaker is taking on this fight without ever consulting even a single chronically ill person. What does that mean? That means that the people who depend on these medications aren’t even being considered when taking them away.”

In her video, Caylee spends little time discussing her own experience as a pain patient. While still in high school, Caylee developed a rare and incurable neurological disorder called Stiff-person syndrome, which is characterized by strong muscle spasms and stiffness. The spams are so severe her lungs have collapsed twice.

“I’ll get such strong spasms in my throat and chest cavity that they create so much air that can’t escape (my lungs) that it just made them literally pop,” she told PNN. “My muscle spasms can break my bones, they’ll get that strong.”

Caylee’s symptoms were usually dismissed by doctors and it took years for her to get a proper diagnosis. Last year, a doctor at a pain clinic dropped her as a patient after getting a warning letter from Medicare that she was prescribing too many opioids. Caylee went without opioids for months, which is when her lungs burst.

Living in Fear

Although Massachusetts has a reputation as having some of the best healthcare in the world, Caylee now drives 3 hours one-way to see a neurologist in Connecticut.

“Any other doctor that I’ve seen over the years has literally looked at me and in one way or another and said, ‘Your prognosis is so dim. It’s so rare.’ They’re not even willing to take me on as a patient. My doctor has stuck by me and tried everything there is to try,” she says. 

Caylee has tried stem cells, chemotherapy and many other treatments. The only thing that works is opioid medication. Although she is once again able to get prescriptions for opioids, she often has trouble getting them filled. She and her husband went to 20 pharmacies one day before finding a pharmacist willing to fill her script.

“You live every single day in fear.  Every time you fill your prescription you go, okay, I’m going to have a life for another month. But you live that whole month with such anxiety and wondering what’s going to happen next,” she said. 

Caylee hopes her YouTube video will help educate the public about the daily challenges of being in pain and give some hope to pain sufferers.

“I want to fight for people going through this. I truly want to fight for them. I just want to let people know that they’re not alone. I want them to know that we’re all in this together,” says Caylee.

“What is probably the most humbling is when I get messages like ‘I would do anything for the world to be able to see this’ or ‘I would do anything for this to go viral and for people to understand what we go through.’ When I get messages like that, that let me know that these people feel like somebody is speaking for them, that touches me in a way that I can’t even explain.”

Wallowing in Pain

By David Hanscom, MD, PNN Columnist

One of the most powerful ways to bond with others is by sharing emotional or physically painful experiences.  It is common for people suffering from chronic pain to discuss it with their family, friends and colleagues.

Between searching for a cure and talking about it, a fair amount of their consciousness is focused on pain. But the unconscious brain, which pain is a part of, is much more powerful than the conscious brain. You can’t consciously fix or control it. But you can direct it. Your brain changes every second and will develop wherever you place your attention. The more you focus on your pain, the more you will reinforce it.

Many of us in the medical profession were trained to have our pain patients keep a diary of the pain. But it has now been shown in some studies (here and here) that a pain diary is often associated with a delay in recovery. Focusing on the pain and documenting it may only reinforce pain circuits.

One of the most powerful strategies we have seen in treating pain is when we don’t allow patients to discuss their pain with anyone – expect with medical providers. People can become so wrapped up in their pain that they lose themselves in it. They become their pain.

I had no idea how much time patients spent discussing their pain until I asked them not to. For some, it felt like I had just dumped a bucket of ice water over their head.

They’ll say, “I feel shallow and phony by not sharing what is really going on with me.” That is a sure sign that he or she has become their pain.

We have witnessed several things occur when people successfully stop discussing their pain. The pain may not immediately abate, but they feel lighter.

For starters, do you really think your pain is that interesting to those who aren’t in pain? There is nothing that they can do about it and although they may sympathize, it is incredibly frustrating to repeatedly hear the same story.  Often my patients don’t appreciate the effect their story has on others. People that they enjoyed in the past drift away, furthering their social isolation.

And what about your poor family? They can’t escape as easily. Instead of you being a source of inspiration, peace, love and joy, you bring the whole house down. It isn’t a psychological issue. The effect occurs through mirror neurons, where you are stimulating the negative parts of the brains of those close to you.

Bonding with Pain

Another harmful aspect of repeatedly discussing your pain is that you will bond with those who are also focused on their pain. The bonds are deep and real and stronger than many human connections.

One extreme example of the strength of the need for social interaction involved a patient who we discovered was being violently abused by her boyfriend. We had to call the authorities. But she kept going back to him. One of my staff finally asked her why she put up with being beat up so badly. Her reply was, “It’s the only time that I have his full attention.”

You’ll be almost guaranteed to remain in pain if you are also contributing to another person’s suffering. One of the most basic parts of being human is giving back and that energy is almost impossible to connect to while you are in the abyss of pain. You are taking from those around you and not giving back.

Even deeper though is that the bond forged by pain is so strong that many don’t want to give up their pain. It’s the one greatest obstacle to healing. Being in a victim mode, in any realm, is so powerful that no one willingly wants to let it go. I run across this resistance multiple times per week. It took me many years before I realized that some patients had become addicted to being in pain and were resistant to change. If a patient doesn’t want to even learn the basic concepts behind solving chronic pain, there is nothing that I can do for them.

Our team has attempted to work with several online pain groups, where a lot of energy is spent on complaining about pain, circumstances and medical care. The complaints are generally legitimate, but little time is spent on discussing real alternatives. When we have suggested that there is a viable solution, we are quickly and consistently blocked.

We’ve also asked our patients to never complain or engage in pain behavior, such as groaning, grabbing their back, etc. If you are having a bad day at work or dealing with an unpleasant aspect of your pain, why bring it home? It is supposed to be your haven of safety and relaxation.

Don’t Share Your Pain

We have been surprised how difficult it’s been for some people to quit complaining.  It’s also been surprising how effective this simple strategy has been in moving people forward on their healing journey. At a minimum, their family is happier and everyone’s mood improves. It’s a great start.

Last week I had five different patients become free of pain. All of them had been suffering badly for many years and the change occurred within a couple of months. One person dramatically improved within a couple of weeks. All were beside themselves trying to express how excited and happy they were to be free of pain. Not discussing their pain was a significant step for each of them.

If you are one who feels like that you have to share your pain, then be honest with yourself about not wanting to give it up. It will save you and everyone else a lot of time and money not making the effort to help you heal when you actually don’t want to. Not sharing your pain is a simple beginning and will give you insight on where you are at with regards to healing.

Many people are incensed at the idea that they don’t want to give up their pain. The response is often that the medical profession just isn’t doing its job and fixing them. Whether that is true or not isn’t the point. The key is that you aren’t willing to learn the most recent concepts about overcoming pain. There isn’t any risk and you are already spending a good deal of time searching for an answer.

If you really think you aren’t attached to your suffering, then try this simple test:  Don’t talk about your pain.

Dr. David Hanscom is a spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery. In his book Back in Control, Hanscom shares the latest developments in neuroscience research and his own personal history with pain.

More information can be found on his 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.

When Will They Start Listening to Pain Patients?

By Ann Marie Gaudon, PNN Columnist

It’s often suggested that pain patients and their advocates write or call elected officials, government regulators and physicians’ organizations to protest the sorry state of pain care in the U.S. and Canada. Many of us do just that and wind up feeling ignored or dismissed.

I have now corresponded with two different physicians at the College of Physicians and Surgeons of Ontario (CPSO), only to be passed onto their “Director of Strategy” (a fancy pants title no less).

The CPSO is the body which governs physicians in Ontario and it has rigidly enforced Canada’s 2017 guideline for opioids. They have monitored patient files, hauled over 80 doctors in to investigate “overprescribing” and basically terrorized doctors for prescribing opioids.

The doctors in turn deny and restrict opioid medications to their patients out of fear for losing their licenses.

I have asked the CPSO these questions:

• What evidence do you have to indicate the long-term use of opioids increases pain?
• Why is the chronic pain population being penalized for overdose deaths due to illicit street drugs?
• Why are you not listening to chronic pain researchers, physicians and patients?
• Does a decrease in opioid prescriptions and an increase in overdose deaths suggest a statistically significant relationship?
• How is it ever acceptable for pain patients to be dictated to by non-pain specialists?

I have provided no less than 27 references to show that there was never a connection between chronic pain patients and those dying from overdoses. However, no one has provided me with answers to my questions -- not even fancy pants.  In fact, the CPSO continues to disseminate disingenuous information about pain management, opioids, addiction and overdoses.

And remember folks, these are the people who took an oath to care for the suffering. That would include all of us pain patients -- or one would think. To put out genuine effort and have nothing but deaf ears returned is sickening -- pun intended.

Health Canada also hasn’t answered my questions and continues to make baseless claims such as "high rates of opioid prescriptions are a contributing factor to Canada's opioid crisis." Predictably, when the media hears that, they rush to publish the news that Health Canada plans to “severely restrict marketing of opioids” -- as if that will have any effect on those dying from overdoses. It will not. The non-pained public laps it up.

I also wrote to my representatives in Parliament. MPP Michael Harris did not respond in any way. MP Marwan Tabbara responded with a boilerplate letter about the opioid crisis, yet when I asked for a purposeful response, none was forthcoming.

Dr. Helena Jaczek, Ontario’s Minister of Health, did not address my concerns either. A representative of Health Quality Ontario did respond to me quickly, yet when I replied with additional concerns, I had no further correspondence.

I’m aware that our friends in the U.S. are certainly not being heard either. Scores of you sent letters and emails commenting on the open letter that desperate pain sufferer Charles Malinowski sent to California Sen. Kamala Harris, who replied with a boilerplate letter filled with hype and hysteria about opioids and how more funding was needed to treat addiction.

Another example is when over 100 comments were submitted to the DEA asking it not to cut the supply of opioid medication because it could lead to shortages and worsen the quality of pain care. The DEA’s response? The agency said the comments dealt with medical issues that were “outside of the scope” of its order. Then it cut the supply anyway.

A genuine letter is sent and verbal diarrhea is returned. I can assure you that this phenomenon is not just “Made in America.” 

If you’ve written or tried to be heard and have gotten nowhere, that is no reason to stop trying to hold governments and physician groups accountable for their shameful disregard for pain patients. We have just had a shakeup in Ontario’s government, so it's all new players now. Will they help? I intend to find out.

Who is with me? More than ever pain patients and advocates need to stick together, focus and move toward effective change. Don’t make quitting an option. If you live in Canada and are a pain patient having unethical treatment forced upon you, please join us at this Facebook page. 

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.

Now Is the Time to Advocate

By Barby Ingle, PNN Columnist

I have written many articles on patient advocacy and it is still one of the topics I am most asked about. Now through the first week of September is the perfect time to visit with your state legislators and congressional representatives. I have appointments with three coming up in the next few weeks myself.

They need to hear from their constituents. The need to learn about issues facing people who vote in their districts and state. They need to know who makes up the pain community so that they can better represent and REMEMBER us when it is time to vote on legislation that may help or hurt our access to proper and timely pain care.

How do you get an appointment? Look up the website for your legislator or congressman and request a meeting. Sometimes you can make an appointment directly through the website, but I believe the best way is to call and set it up, followed by a written request or confirmation of the appointment.

You may be scheduled with the lawmaker themselves or a staff member who assists them with a particular issue. In our case, it is usually the staffer who handles health or insurance issues.

These appointments can take place in Washington, DC or in your home state. The U.S. House (but not the Senate) is in recess until after Labor Day, so most representatives are in their districts campaigning for the midterm elections. Many are taking meetings and doing town halls.

When you call for a meeting, you may get voicemail. Leave a message! If you don’t get a return call in a few days, call again. If someone answers, call and ask to speak with the scheduler.

It’s impressive to friends, family and other pain community members when you actually follow through with a meeting. It is something that anyone can do, but few actually try. Most rely on others to make it to these meetings.

You need to focus on what you'll talk about before the meeting. If you get an appointment, dig in and study. Do your homework and research legislation so you can explain why you support or oppose it. Share your personal story in a highlight reel fashion. You might have a 20+ year story of living with chronic pain and illness, but you should get it down to no more than 2 minutes. Highlight the challenges you faced and where you are now in the chronic care process.

Make an Ask

The main purpose of your first meeting will be to familiarize yourself with your senator, representative or legislator and make a memorable connection. Stay on topic, stay timely and “make an ask” – ask them to do something specific for you.

These meetings typically last 15 to 20 minutes. Don’t bring a truck load of supporting materials. Discuss no more than 3 topics at the meeting and leave a one-page fact sheet for each topic. You want them to know that they can use you as a resource, so include a calling card with your contact information.

If you are asked about a fact that you don’t know the answer to, just say, “I don’t know.” It is better to be truthful than to make something up and risk losing credibility. You can always follow-up later with the information they seek.

You are there to make an ask, so set a reasonable deadline for them to respond to you with the answer. They may say right away they won’t support or oppose a bill and why. Don’t argue with them if they do. Use it as a teachable moment as to why you hope they will reconsider and how their decision will affect you and others like you in the pain community. If they haven’t taken a position on the issue in the past, it is not likely that they will commit to one in this meeting.

When you get home, always send a short thank you letter to the representative or staffer who was there. Also include any follow-up answers you promised. Remember, if you met with a staffer, they are there to filter out the messaging and bring back the best info they can to the representative.

our 2017 MEETING WITH WITH REP. ANDY BIGGS

If you do get an actual face-to-face chat with your senator or representative, you are lucky. In 2017, we were fortunate to get a meeting with Arizona Rep. Andy Biggs (pictured above).  A personal meeting like that demonstrates to lawmakers there is a constituency for chronic pain and illness that is active in their district and needs to be listened to.

After your first meeting, get ready for the next one. Stay in touch with the staffers and representatives, and when it comes time for them to act or vote, there is a better chance they will remember you and your story and do something that helps the pain community in a positive way.

Hearing directly from patients and caregivers goes a long way in helping us get access to proper and timely pain care. They need to know that we care, so they should care too.

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.

I Thank God for Opioid Medication

By Carmen Littizzio, Guest Columnist

I was born with a rare genetic defect called Arnold Chiari Syndrome, which blocks the flow of cerebral fluid and causes pressure to build in my brain. I had brain surgery to treat it in 1999, when I was 44 years old.  

During this surgery they cut off a portion of the skull in the back of my head to make more space for cerebral fluid to flow. Lack of fluid in the brain and spinal cord causes intense pain for me from the waist down.  At times I’m not able to walk and have painful electrical sensations that are torturous.

Nineteen years after the surgery, I still suffer from high pressure headaches, chronic leg pain, thigh and buttock pain, and other symptoms. The high cerebral pressure has also caused other problems, such as retinal detachment in both eyes, vomiting, vertigo and vision issues. 

In 2008, when I was 53, I developed a crowding in my spinal cord the same as I had in the brain and had to have a spinal cord decompression. They put a titanium plate with four screws into my back to hold it all together.

This operation was so intense that for days after the surgery, I just wanted to die. It was a living hell.

I survived with the help of morphine, but eventually went back to my old pain medication, which consisted of Neurontin, Topamax, Elavil and Diamox -- all in very high doses.

CARMEN LITTIZZIO

In 2009, my body started shutting down because of those meds and I was unable to urinate. I had a permanent catheter put in and all those medications were stopped. I started taking Percocet for pain. After 4 months, I began urinating again and never wanted to go back to those other meds. 

I was told of the dangers of long term opioid use, but decided to risk it for some quality of life. My other choice was to sit in a wheelchair for the rest of my life, be able to do nothing, and still die young because of being so sedentary. 

I am now 63 and next year it will be 20 years since the brain surgery. I take a time released OxyContin in the morning and evening, and oxycodone for breakthrough pain and the headaches. 

I am entering my senior years, but still walking on my own and enjoying my children and 5 grandchildren. I don't know how much longer I will live, but I feel like I’ve won the war. What war? The war for quality of life. I thank God for opioid medication. I have never been high or abused my medications. 

I feel very bad for those that abuse narcotics or overdose.  But why should I pay the price for their inability to use self-control? We don't take alcohol off the market because we have alcoholics and drunk driving.

There are many people like me that have chronic pain and illness, and we are paying the price for those who abuse. It’s not right and not fair that we should be made to stop living because of their issues.  Nobody has the right to choose for me. 

Carmen Littizzio lives in Maine.

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.

Why ‘The Bleeding Edge’ Gave Me a Panic Attack

By Emily Ullrich, Guest Columnist

If you haven't seen it yet, you've likely heard the buzz about The Bleeding Edge on Netflix. This documentary should be seen by every adult in America, not just chronically ill or chronic pain patients.

The Bleeding Edge gives insight and affirmation to those of us who have dealt with the medical system a little too much and demonstrates how important self-advocacy is. If you haven't seen it yet, don't let what I'm about to tell you deter you. I've seen it twice now. The first time I watched it, I had a full-on panic attack because it reminded me of the infuriating ordeal I went through dealing with the American medical system.

I wanted to watch the film again, hoping I would be able to watch it more objectively. I made it through the second time without a panic attack, but I was still yelling at the screen.

The film covers an array of medical device errors and malfunctions. But more importantly, it also delves into the mistakes and oversights that the FDA, CDC, American Medical Association and others have made (and continue to make) at the expense of our health because it's more lucrative to make us sick than it is to ensure our safety.

One of the main topics in The Bleeding Edge is the autoimmune disorders that many women developed after the implantation of the Essure birth control device. I was especially stricken by this story.

My first experience with chronic pain was pelvic pain, due in part to endometriosis. I started having my periods when I was 11 years old, and by age 12 was literally passing out because of the severe pain I had when menstruating. I saw doctor after doctor, and every one of them told me the same three things:

“This is normal.”

“At least part, if not all of this, is psychological.”

“Take ibuprofen and a hot bath, and you'll be fine.”

Of course, they were all wrong.

By age 19, I went to probably my twelfth doctor. She decided, in her infinite and culturally superior attitude, that since I had two sexual partners in my lifetime that I must be promiscuous. And if I continued this reckless behavior, she would not be able treat me and would be forced to tell my parents. When I told her I didn't need to be judged or lectured, she clucked her tongue and shook her head, as though I was a lost cause.

Many years and irresponsible, uncaring and uninformed doctors later, at age 31, I went to a doctor who told me I probably had endometriosis and performed a laparoscopic procedure to confirm this diagnosis. The procedure was also supposed to remove it and I was supposed to feel better. It didn't.

As I aged, it got worse. And as I moved around the country, I had to go through the degrading and exasperating experience of finding a doctor who believed me and believed in endometriosis. Many OB/GYN's and MD's still do not.  Even now, I see doctors on occasion who refer to it as a “garbage pail diagnosis.”

The Mirena IUD

At age 36, I was finally referred to a pelvic pain specialist. He believed in my pain and suffering and wanted to help. I cried because he was so nice.

After a fourth endometrial ablation surgery, he suggested the Mirena IUD as a long-term solution to my problem. He said it would not only prevent pregnancy but would be effective in reducing or eliminating my periods. As I lay back to have the IUD inserted, he assured me that it would not be painful that I would merely feel a “slight pinch.”

I never felt ANYTHING as excruciatingly painful. The doctor mistakenly punctured the fundus of my uterus. So, he casually penetrated me again with the same invasive tools, pulled the IUD out, opened a new one and attempted to place it. My uterus simply spat it back out at him. He said, laughing, “Your body doesn't seem to like this! Wanna try it again?”

I should have listened to my body and said no. But he tried again and finally placed it. For the next nine months. I bled profusely every day and the pain was worse than ever. I called and visited the doctor numerous times throughout these months, and every time he assured me the bleeding would stop and I should be patient.

Finally, I marched into an appointment and demanded he remove it. He did, and although I had pain for the next few days, it finally got a little better.

My point in all of this is that I now have about 15 chronic pain conditions. And with each one, I have a similar horror story. I feel a connection to the women who had the Essure device and who later developed autoimmune illnesses because of it. I will never know if any of my ongoing list of health problems stemmed from the Mirena, but I do know that after my bad experience with it and a few other attempted medical devices, my body doesn't respond well to foreign objects.

We are all different chronic pain snowflakes, if you will, and different treatments work for different people. However, as one goes through the process of repetitive ER visits, hospital admissions and doctor's appointments, we get to know what we can and cannot tolerate pretty well.

The pain patients' mantra of “Be Your Own Best Advocate” could not be hammered home better than it was watching The Bleeding Edge. The film struck a deep chord within me about the irresponsibility of our government, medical companies and doctors, as well as their willingness to suspend disbelief if it is easier and more financially convenient, even if it's at the cost of people's lives.

It is very much like the movement to stop the use of opioids, a proven and mostly safe class of pain medication, while encouraging the use of under-tested drugs with bad side effects that are often prescribed off label to treat conditions they were never intended for. It doesn't matter anymore if the patient has a better life or not. It only matters that the medical system drains our wallets and souls, while selling theirs.

Still, after all of this, we have to fight. We have to because no one else is going to do it for us. We have to do our own research and educate ourselves about medical devices and treatments.

As The Bleeding Edge demonstrates, when you can buy stock in healthcare companies, when government became controlled by corporations, and when doctors get paid for using and recommending their products, we lost the ability to trust them. 

Emily Ullrich lives with Complex Regional Pain Syndrome (CRPS), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis,  Interstitial Cystitis, migraines, fibromyalgia, osteoarthritis, PTSD, insomnia, bursitis, depression, multiple chemical sensitivity, and chronic pancreatitis.

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.

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.