A Funeral for My Health

By Crystal Lindell, Columnist

I want to have a funeral for my health. I want to go abroad and throw its ashes into the sea while wearing a beautiful black dress and Jackie O sunglasses to hide my tear-stained eyes.

I want to take a week off work and forget to shower while everyone brings me casseroles. And I want all of my friends and family to acknowledge what I’ve lost with slideshows and poorly written eulogies that succeed in making everyone cry.

I want to drink too much wine in a vain attempt to numb the pain, and maybe even take up smoking and a few bad men.

I want to sit around with lipstick stained coffee cups late at night telling stories about how amazing it was — my health.

How it let me lead so many youths on mission trips to far-off places. How it let me fall in love so many times. How it let me shower without pain, lured me into believing I would be immortal, and how it allowed me to travel the world.

I want to take all the time I need to figure out how the hell I’m going to live the rest of my life without it. How I will find love, be independent, and survive all of my physical limitations.

And I want the planet to just stop turning for one second while I catch my breath and adjust to the fact that world is a different place than it was.

The obituary would read as follows:

Crystal Sue Lindell’s health died after a 5-year long battle with her body. Her health was 34.

News about the loss came via email from her doctor when he confirmed her worst fears: She likely had hypermobile Ehlers Danlos syndrome (EDS) -- a diagnosis that meant that she would not only never get better, she would likely continue to get worse.

Her health is survived by her body, which will, unfortunately, carry on, in immense pain, despite the loss.

There is no cure for EDS, and as such, her health is completely dead.

She looks forward to seeing her beautiful health again one day in the afterlife, where she hopes it will be waiting for her among the stars.

In lieu of flowers, Crystal asks that donations be made to EDS Awareness, a non-profit online resource for the EDS community.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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.

Are You ‘Paingry’ About Your Pain?

By Ann Marie Gaudon, Columnist

I’ve learned the hard way how you can stress anyone at all. Put these three factors in their life: Uncertainty, lack of information, and loss of control. Chronic pain patients are slammed with all three.

The stress can manifest itself in a variety of ways -- including anger -- and pain patients have a lot to be angry about. I’ve heard it called “paingry” -- which might even be cute if pain didn’t have the capacity to obliterate lives. People in pain typically experience greater anger than others because they carry the burden of many frustrations related to work, finances, relationships, health care systems, limitations, losses, etc.

We all tend to resort to anger to protect ourselves because someone or something has done us wrong. We protect ourselves from feeling what is “underneath the anger” which is emotional pain and feelings of vulnerability. Pain patients often have these feelings in spades. Anger is a natural, adaptive, emotional response when we feel threatened. It is the “fight” in the fight-flight-freeze response.

It’s no surprise that for chronic pain patients, anger arousal is associated with greater pain intensity, muscle tension, and interference with function and relationships.

So is anger regulation, whether it’s expressed in an outburst of anger (blowing up) or inhibited as anger (stuffing it down).  Blowing up won’t help you, but it will make you untouchable. You don’t want to be touched and nobody wants to touch you either.

Stuffing it down merely buries problems, which won’t go away and can lead to seething anger. These things are bad for everyone’s health and worse if you have chronic pain.

If you’ve got chronic pain, you’re going to be frustrated a lot of the time and acceptance of your condition becomes important. However, even learning acceptance can spark anger. You may think, “Why should I have to accept this? What have I done to deserve it?”

Understand Your Anger

Ironically, getting angry is not the problem. The real problem is a lack of awareness that anger is building into destructive ways of expressing that anger, and poor resolutions when we blow up in anger.

Here’s my message to all chronic pain patients: Don’t waste your anger, put it to work for you.

Understanding your anger is important. It is not caused by anything outside of you but is a response – sometimes not even conscious – that you make based on your interpretation of events. Feeling betrayed by your body? Doctors underestimating your pain? Suspected of malingering at work? Hard up for finances? Relationships breaking down? Denied or restricted medications? Stigmatized and discriminated against because you need opioid pain medication?

I don’t know about you, but I’ve come to loathe the phrase “drug seeking behavior” in reference to a legitimate pain patient because it’s so misguided. “Pain relief seeking behavior”? Now you’re talking.

Anger is an assertion of your most basic rights as an individual. Angry feelings need to be validated or acknowledged by yourself and others in order to move on to problem solving. You’re going to need a commitment to optimal pain management and to process your anger in a healthy way. The question then becomes, “How am I going to live with this in the best way possible?”

What Is Anger Telling You?

Anger and other raw emotions can be considered warning signs to things that we care about. Feeling enraged about your life with chronic pain can be a signpost that you value health, a productive life, want to be cared about authentically, and that you are not being treated fairly. If we didn’t experience anger, we wouldn’t have the message. It is a very healthy and necessary emotion to help us protect ourselves.

What is your anger telling you? If you misunderstand the message or do not act on it, your body will react and your pain will be escalated. Know that. It’s also crucial that you look for primary emotions. Those will be the underlying the hurt, vulnerability, and feelings of unfair treatment. They can be quite uncomfortable for a lot of folks.

Think of an iceberg. The much smaller top portion that you can see is the anger. What is not so obvious is the much larger mass underneath the water. That is your emotional pain and what you need to process and feel for all its worth. You need to acknowledge the entire iceberg; really get to the bottom of it. Secondary emotions like anger are often not helpful, especially if it leads to rage. Use your anger as a tip off that you need to look deeper to alleviate your distress.

Plenty of chronic pain patients need help with anger because they have so much to be angry about. See a therapist. There are many questions you will need to address. “Is there any unfair treatment in my life? Am I being honest and authentic about how I really feel? Are my needs being met? What is my message and what needs to be changed?”

You can get help becoming aware of your emotions on your way to accepting them. You can learn to take actions guided by these emotions – and put them to work for you.

If you’re a pain patient with no history of mental illness, yet you find yourself damned angry, breathe easier. You couldn’t be more normal. Pathologizing you with a mental health disorder and treating it with medication will not help you with your anger. Get help to listen to your inner dialogue.  See anger as a useful emotion. It’s telling you something that needs tending to.

I have a simple but effective strategy. It doesn’t involve diagnoses, medication, or creating spaces between myself and another person. Rather, I lean in and rely on empathy, respect and compassion for a fellow human being who is clearly overwhelmed with torment. Quietly and gently I ask, “Is it okay if we talk about your suffering?” The floodgates open. Know that is normal too.

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.

The Search for a Chronic Pain Gene

By Roger Chriss, Columnist

The book “Chasing Men on Fire: The Story of the Search for a Pain Gene” by Yale University neuroscientist Stephen Waxman, MD, describes the hunt to understand and treat a rare neuropathic disorder called erythromelalgia – also known as burning man syndrome.

Inherited erythromelalgia is a rare painful neuropathy that causes severe burning pain and skin redness. Attacks are periodic and commonly triggered by heat, pressure, mild activity, exertion, insomnia or stress. The burning pain occurs in small fiber sensory nerves.

The book includes 13 research papers by Waxman and his team that illustrate the the process of discovering that the gene SCN9A is responsible for erythromelalgia, as well as idiopathic small fiber neuropathy. Waxman shows considerable understanding of the plight of people with these disorders.

“Since their neurological examinations were often normal, the complaints of patients with small fiber neuropathy -- which occurred without physical signs of disease of the nervous system that can be seen by the physician -- were, in the past, often dismissed as being of little consequence, or as having a psychological origin,” he wrote.

But the disorders are genetic. And understanding them has wide-ranging potential value. These mutations, once identified in families with rare inherited diseases, can teach us important lessons about other medical conditions.

Waxman cites the famous example of familial hypercholesterolemia, a rare metabolic dysfunction whose understanding led to the development of statin drugs.

Waxman’s work suggests that similar advances may be possible for other neuropathic pain disorders. Waxman and his research team found that “neuropathic pain reflects dysfunction of the nervous system and can occur when DRG [dorsal root ganglion] neurons take on a life of their own and generate pain signals even in the absence of a noxious stimulus or inflammation.”

Eventually, Waxman was able to show that one change in the genetic code for this gene was responsible. In other words, erythromelalgia and inherited small fiber neuropathy are the result of genetic mutations – debunking the theory that patients with these disorders have psychological issues.

“Surprisingly, despite their history of chronic pain, on psychological testing we found that only two subjects displayed signs of moderate anxiety and depression,” Waxman explains.

Rigorous clinical testing confirmed these ideas. Waxman and his team began by doing human studies on erythromelalgia, then moved on to small fiber neuropathy in 2010. They found evidence that genetic mutations may contribute to disorders of pain signaling. Understanding the exact pathophysiology of these painful neuropathies opens the door to new and more effective treatments.

“Identification of specific molecules that play key roles in axonal injury might provide a basis for therapies that would prevent, or slow, the degeneration of axons, thus halting or slowing the progression of peripheral neuropathy,” Waxman wrote.

The first drug tried was the sodium channel blocker carbamazepine. Pre-clinical studies in people confirmed that it does have a protective effect. Additional work using a research drug nicknamed “771” shows similar promise.

Research into leveraging this hard-won knowledge is ongoing. This work could ultimately lead to new treatments for a wide range of neuropathic disorders, including trigeminal neuralgia, diabetic neuropathy, and phantom limb pain.

The book “Chasing Men on Fire” amply illustrates the challenges of medical research and the importance of even seemingly small genetic variations in chronic neuropathic disorders. And it reminds us that rare disorders often provide invaluable insight into human disease and dysfunction that can benefit us all.

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.

Be the Best You

By Barby Ingle, Columnist

Recently Melania Trump unveiled her "Be Best” campaign, which focuses on the well-being of children, their use of social media, and preventing opioid abuse and bullying. The First Lady wants to promote healthy living, kindness and respect so that children are better prepared physically and emotionally to face the challenges of tomorrow.

“It remains our generation’s moral imperative to take responsibility and help our children manage the many issues they are facing today, including encouraging positive social, emotional, and physical habits,” she said.

Those are admirable goals. But I strongly believe that we need to make tomorrow the best it can be for everyone – including the pain community. The same challenges the First Lady sees for children are faced by everyone who is living in pain, disabled or is a caregiver for someone in pain.

Since 2012, I have been losing too many friends to suicide who are not being adequately treated or who don’t have access to proper and timely care. Instead of society stepping up and helping, I have seen the bullies (in our community and in the general public) berate and beat down people in pain who want to live, thrive and succeed despite the challenges they face. Pain patients are committing or attempting suicide at an alarming rate.

We can make a difference if we use our voices to encourage positive social, emotional and physical well-being. By living with purpose and exuding positive attitudes, pain patients will be better equipped to deal with the physical and emotional challenges we face.

In recent years, I have been happy to see many pain patients and caregivers use their voices to speak out and work to create the change we need. We have begun to see our stories and efforts get some attention in the local and national media.

Although we are just scratching the surface, we are making change happen. We have to continue creating that change with hope, resilience and strength more than ever.

I get many calls and emails from patients who have been poorly treated in their search for pain care, threatened on social media, and criticized for trying to show the plight of pain sufferers and their lack of access to effective treatment.

I have seen firsthand how this lack of compassion has affected both pain patients and addicts, who together make up more than a third of our society. Some addicts are stepping up and saying what is happening to pain patients because of sweeping measures to prevent opioid abuse is not right, compassionate or ethical. 

I hope that the efforts of both the pain and addiction communities will show the administration and Congress that we need to work on both the pain epidemic and the lack of access to proper and timely pain care.  I hope you will join in these efforts in your own way. It shouldn’t matter where we live, how rich or poor we are, or what our health is like. We should have less stigma and more compassion for the suffering. 

Ordinary people can do extraordinary things. Let’s make it our mission to have our own “Be Best” campaign. This doesn’t mean being perfect or making change in one day. It means recognizing areas where change is needed and coming up with solutions. A place to start is understanding and sharing core beliefs that we can agree on. There are four beliefs as a pain patient that I subscribe to:

1. Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions. 
2. Effective pain care requires access to a range of treatment options, many of which are currently being denied. 
3. Chronic pain is an unrecognized public health crisis with devastating personal and economic impact.
4. Allowing people to suffer with unmanaged pain is immoral and unethical. 

These goals were agreed on two years ago by over 70 healthcare and advocacy organizations in a letter to Congress urging it to implement the National Pain Strategy. Isn’t it time we started acting on that?

I believe that we can agree on actionable solutions that promote better well-being for all. I look forward to hearing your thoughts on tools and skills that will improve the social, emotional and physical health of pain patients. We need more than pain organizations to make these changes. We need patients, families, caregivers, providers and the public to help us solve the challenges we face as a pain community.

We have a purpose to be your best you. What is it that you can do to be your best?  

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.

Our Government Is Murdering Its Own Citizens

By Lee Horton, Guest Columnist

I am about to start raising holy hell because I now have nothing to lose. The doctor that has been taking care of me the last 5 years is suddenly scared to death and cutting my pain meds, while my insurance is cutting my benefits and raising my deductible and co-pays.

I live on Social Security disability and a meager pension that leaves me with little extra cash at the end of each month. I can no longer afford to fight both disease, injury and now my government. All of these have become the enemy of good health.

I am no longer "entitled" to my life I guess. Since I'm not a taxpayer thru payroll any longer, they do not see me as having any value to this nation. I have accepted that my only future is to have no future at all.  That's what they have left me with. I'm not good enough, wealthy enough or important enough to save and treat humanely or morally.

I'm being discarded like the trash that my government thinks I am because I have a need for medicines that they are uneducated about and don't understand. 

The whole "Opioid Crisis" is just a massive coverup for our government's inability to stop the flow of illegal drugs that are entering this country by the truckload every stinking day. They are the ones that have failed. They are the people that have gotten us all in trouble. They are the ones that created a "drug problem" in this country.

LEE HORTON

Why is it that almost every other nation on the planet with more liberal drug policies has less of a drug dependence problem?  The answer is quite simple. It is because this country views every problem with a punitive solution. The perspective of our leadership is skewed to make everything appear to be criminal when it’s done by the public, but legitimate when done by the federal government.

We might even be seeing a foreign policy tactic by allowing China to export their drugs for sale in this country. Who the hell knows? Remember the “Fast and Furious” gun scandal, Iran-Contra, Noriega, Afghanistan and the Mujahedin? Point being, this government has done it before.

What I do know is that I'm done. I'll no longer be quiet, and I won't let them get away with murder. That's exactly what they are doing, our government is murdering its own citizens by putting us in the position of either suffering every day of our lives or ending our lives.

And we send these callous, heartless and unimaginative politicians to Washington DC so they can lie and hide the truth from their constituents. If any of those people in DC truly believed that the source of the opiate epidemic was the pharmacy, they would be educating themselves on these drugs and how they also benefit more people than they harm.

But we don't see anyone doing that, do we? We see politicians, department managers, and the heads of the FDA, DEA and other agencies all looking for someone to catch and blame so they can score some points with Congress and get a bigger budget next year.

A good general or military planner always looks for the potential "collateral damage" when putting together a battle plan. The FDA, DEA and Congress have not done that, or they would not have been painting with such a broad brush.

Patients Need to ‘Rise Up’

I'm done with all that BS. I probably only have a few years left, so if I am to have any chance at making any difference and helping anyone that suffers in chronic pain, I must start now.

I have spoken to my doctor about this and he agrees that the patients need to "rise up" and start making noise, and the public needs to be educated and told the truth about the overdose stats the government and media keep listing. The vast majority of opiate-related deaths and overdoses come from heroin, illicit fentanyl, and other illegal street drugs, not the prescription pain meds that they are using as a scapegoat.

This is as good a place as any to start my war on stupidity and ignorance.  I want others to hear why I need these medications that the public is being taught to blame the ills of society on. I have yet to steal a car stereo or rob a liquor store to support my “habit.”  THAT is what the government and the media want the public to imagine when they hear of someone taking opioids.

This is about the health and well being of American citizens that they are placing at risk. It's easy for them to live with collateral damage when it's in Syria or Afghanistan, when they don't have to see the faces and know who and how many they hurt. Let's see if they are still so eager to cause suffering when it's their own people.

All the work and risk by colonists to discover America and build a nation, free from persecution and suppression by a corrupt government -- out the window.  We’re right back where they started. Literally out of the 16th century frying pan and into the 21st century fire.

Is this proof that liberty, freedom and independence are not yet possible for the human race? Are humans insufficiently evolved? When I see deliberate, intentional cruelty and the persecution of anyone, it makes me stop and wonder.

Lee Horton lives in Texas. He has osteoarthritis, neuropathy, stenosis, Ankylosing Spondylitis, fibromyalgia and numerous broken bones due to workplace injuries and accidents. Before he was disabled, Lee worked for 40 years as an operating engineer in heavy construction.

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: The Shared Experience

By Carol Levy, Columnist

I'm watching TV. An ad for an eczema drug comes on.

“Sorry, I can’t make it,” a woman says to the person on the other end of a phone call. “It’s just my eczema again. But its fine.”

Later a co-worker asks, “Are you okay?”

As she scratches at her arm, she replies “Eczema. Its fine.”

The commercial is on a lot. Every single time I hear it, I get annoyed and then angry. You're itchy and have a patch or two of dry skin?  So what? It’s not the pain of CRPS or trigeminal neuralgia or another horribly painful condition. Big deal.

Then I catch myself.

I have a small area on my back, about the size of a quarter, right in the unreachable spot. It itches horribly. Sometimes it lasts for a short while, sometimes for days or even weeks. The doc has a name for it, notalgia paresthesia, but naming it is of no help.

There is not much to be done for it. I rub against the door jam, brush it hard with a hairbrush, put on all kinds of salves and ointments. Even the numbing meds don't help.

What if I had this itch in a lot of places on my body? What if I couldn't control not just one area on my back but a bunch of them? It would be unendurable.

I think of all the times I ask myself, the many times so many of us ask: “Why do other people have such a hard time understanding and accepting my pain? What if they could feel it, even if only for a minute?”

It's a good question. It begs an answer. But let's face it. It is unanswerable. Even the cliché “If you could walk in my shoes” never gets us anywhere.

Maybe there is another way. Not the theoretical, but the experiential.

What if we said: “Remember the pain when you broke your arm (or were injured or ill and in pain), how horrible that was? Imagine that pain being with you all the time. Imagine instead of a cast and some pills, there is no way to tame it, no way to know if the pain will ever go away or at least get better?”

Everyone at one time or another has been in our shoes, even if only for a snapshot in time. The shared experience is the cement for so much of life. A reminder of their time in pain time might be the foundation on which acceptance can be built.

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.

Dear AARP: Stop Picking on Pain Patients

(Editor’s Note: Last year PNN columnist Rochelle Odell wrote an article critical of the American Association of Retired Persons (AARP) for publishing a special report entitled “The Opioid Menace.” The report claimed that many older Americans had become “new opioid dealers” who were fueling the opioid crisis by “selling their prescription painkillers to drug pushers.”

AARP recently published a new bulletin, which focuses on how scammers are bilking Medicare for $60 billion annually. Once again, AARP claims that Medicare fraud "puts deadly pills on the street" and helps fuel the opioid crisis. In response, Rochelle wrote this open letter to AARP’s editors.)

Dear AARP Editors,

I received the AARP Bulletin and at first found your cover story on Medicare fraud interesting. Fraud is a major problem that will need patients, physicians and law enforcement to resolve. It causes healthcare costs to rise, which many of us on Social Security and fixed incomes can’t afford to pay.

As I got towards the end of the bulletin, my anger began to rise as I read "The Opioid-Medicare Connection." You claim that “shady doctors are writing bogus prescriptions for opioid painkillers” using stolen Medicare ID numbers and that “the pills are then sold on the street for huge profits.”

“The practice is shockingly common, and the impact is severe. For Medicare, it means covering the cost of countless millions of high-priced pills that never should have been prescribed. At the same time, prescription opioids are responsible for an estimated 95 overdose deaths a day in the United States,” the article claims, without ever citing a source for that information. 

It brought me back to last summer when AARP published "The Opioid Menace." Why is AARP constantly attacking opioid pain medication? Why do you continually write misleading information about opioids? Could it be dollar motivated? 

Then I read about AARP's survey on medical marijuana, which found that a majority of older Americans “think marijuana is effective for pain relief and should be available to patients with a doctor’s recommendation.”  I have to disagree with the survey findings. There are many of us who have tried medical cannabis and received zero benefit. It did nothing for my pain. 

Then it dawned on me, of course insurance providers such as AARP would like more patients to use cannabis. As it becomes harder for us to get prescription opioids, many pain patients are turning to cannabis, a treatment that AARP and other insurers don't have to pay for. How much will that fatten your bottom line?

I find it hard to believe stolen Medicare ID numbers play that big of a role in the opioid crisis. Prescriptions for opioid medication are tracked more than ever, with doctors, pharmacists and insurers having instant access to databases to see just how many prescriptions a patient is getting.

I have been on Medicare since 1997 due to becoming disabled by Complex Regional Pain Syndrome (CRPS). There has never been a time that I did not have to present a picture ID when picking up an opioid prescription. And if I was unable to pick them up myself, a friend or relative had to present my ID confirming it was indeed for me, along with my current address.

Please explain how the "shady doctors" you referred to in your article are able to pull off this "shockingly common" fraud and make “huge profits.” As in last year's Opioid Menace article, AARP uses minimal references to support these claims. It was interesting you referenced only one physician who did this, only one. 

Medicare just published a new rule starting in 2019, which impose new limits on high dose opioids and requires “high risk” patients to see a specific physician and use a specific pharmacy. Think of the money you can save now. More patients paying out of pocket for medical cannabis and prescription opioids being reduced or stopped. 

Whatever happened to AARP being there for us older Americans?

Rochelle Odell lives in California. She’s lived for nearly 25 years with Complex Regional Pain Syndrome (CRPS/RSD).

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.

Should You Record Your Medical Appointments?

By Barby Ingle, Columnist

My memory troubles started soon after developing Reflex Sympathetic Dystrophy in 2002. “Brain fog” or “pain brain” is a common symptom of RSD, fibromyalgia and other chronic pain conditions. Our brains have trouble focusing on short term memories and storing them for easy recall.

Even now, in a semi-state of remission, I have trouble saying the right words at the right time or remembering if I have seen a movie before. To help my memory and keep appointments, I started keeping a “to do” list and using a color-coded calendar and a medication dispensing system. I also made a habit of recording phone calls and conversations with my healthcare providers.

I’m not alone. According to a recent JAMA article, about 15% of patients in the UK secretly record their medical visits, often using their smartphones. I have been recording since 2003, after I realized that my memory was weak and that I needed assistance to better comply with my care between appointments.

How many times have you hung up the phone and your spouse asked, “Who was that? What did they need?” Or they came home from work and asked, “What did the doctor say?” or “What did you do today?”

And you can’t answer.

Before you think, “Oh, Barby must have been high on her pain medication,” that for me is a big fat NOPE. It happened to me when I was not on any medications. It is a symptom of my medical condition, not a symptom of the medications I take. For some patients on other medications that may be a problem, but it only adds to the already challenged mind of someone with chronic pain or traumatic brain injuries. The worse the pain gets, the worse their memory gets.

While you're talking, you think, “Oh, this is important, I will remember this.” Yet, you don’t. You can’t recall what you had for breakfast or when you last took your medication, let alone the intricacies of a doctor appointment.

Studies show that recording medical appointments reduces malpractice claims and leads to better understanding from patients on what their care is and why. This leads to better patient compliance and engagement in their own health outcomes.

The University of Texas Medical Branch is promoting patient recording of their visits. They tell patients it is an open policy that is there to protect them and their providers. Check out the video they created: 

Is It Legal?

I live in a state where recording a conversation only has to be known by one party. But if you are in New York or California, you have to inform and get permission from all those who may be recorded in advance.

Sometimes I record in secrecy, but most times I have my husband or sister record the appointment -- and it is quite clear what they are doing. In 15 years of doing this, I have only had one doctor ever ask me to erase the recording. That was because he had other providers in the room examining me and he talked about proprietary information that didn’t have to do with my medical condition.

I know that when I am under stress or have high pain levels, I need to record or have someone take notes at the appointment or both. It’s hard to remember if you’re supposed to take a new medication twice a day before meals, on an empty stomach, or once in the morning and once at night. Appointment times are also getting shorter and more filled with new medical terms and information that is important for us to remember.

In general, a healthy person only remembers about 25% of a conversation as soon as it is over. If you have a stressful chronic condition, even remembering that much is almost impossible. So why not record for your own safety? With most smartphones, all you have to do is press record at the start of the appointment and then hit stop at the end.

You’ll be better engaged, have an accurate account of the appointment, and be able to refer back to it when you get home and someone asks, "What did the doctor say?"

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.

How CDC's Opioid Guidelines Killed My Mother

Sheila Ramsey, Guest Columnist

For the past year, I have been reading the heartbreaking stories being posted about the degrading and inhumane treatment of the elderly, critically ill and disabled persons by our government, healthcare institutions and physicians.

And all I can do is sit here and cry, thinking about the struggles that my mother went through for the last 25 years of her life. She was a diabetic for 40 years, had rheumatoid arthritis, osteoarthritis, degenerative disc disease, high blood pressure, depression and cystic lung fibrosis. These conditions caused her much pain every day.

She was placed on a low dose of hydrocodone 20 years ago. It did not completely erase her pain, but made it manageable to where she wasn’t completely bedridden.

Then in 2016, when the CDC came out with their opioid "guidelines," her doctor reduced her dosage three times. I watched her suffer immensely and she pleaded with him to raise it several times. He would not.

Her life became more miserable than before and her depression worsened. She even had to stop driving, relying on me and a few friends to take her to appointments and grocery shopping once a week. Which were the only times she got out of her small one-bedroom apartment.

In May 2017, her lung disease got worse and it was hard for her to breath due to panic attacks several times a day. Her pulmonary doctor placed her on a low dose of Ativan to reduce her anxiety.

JANET DIXON

As soon as her primary care doctor found out about that, he immediately gave her a choice of which illness she was willing to suffer from: panic attacks or chronic pain due to her many incurable illnesses. She chose the Ativan and he immediately stopped her pain meds. She then had to start using a walker instead of her cane.

In June 2017, she had a friend drop her off to see her lung doctor. While waiting for the elevator, she tripped over her walker, fell and broke her hip. She went into the hospital for surgery, caught pneumonia and had to be placed in a medically induced coma. She also had congestive heart and kidney failure. She was waiting on a lung transplant but did not make it. We had to take her off life support on October 25, 2017.

This was all due to complications from being in the hospital for a hip surgery that never would have been needed if she did not have to use a walker and had not been taken off pain medication! If her pain had been controlled, my mother might still be alive.

That’s why it angers me that our government is denying medication to patients that benefit from them. How in America can our lawmakers let this happen? I’ve written so many letters. I don’t know who else to contact or what else I can do to help all the people who have been brutally denied pain relief and subjected to humiliating and degrading treatment. Please if there is anything I can do to help stop this neglect, I’m all in.

I just want to let everyone who reads this to know that I feel for each and every one of you who is suffering, and I hope this ends soon. God bless you all.

Sheila Ramsey lives in Ohio. Her mother, Janet Dixon, died last year at the age of 69.

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 All the Doctors Who Missed My EDS

By Crystal Lindell, Columnist

I hate you. I actually hate you.

Well, maybe not all of you.

But most of you, yes I hate. Actually, hate is too nice word. I detest you. I loathe you. I have venom in my heart for you. I hope your favorite show gets cancelled after a cliff hanger. I hope your air conditioner breaks in your car in July. I hope your crush never likes any of your Instagram photos. I hope every single time you go through the Taco Bell drive thru, they mess up your order. And I hope your phone screen cracks, your laptop crashes and you lose everything you ever saved.

I was recently diagnosed with Hypermobile Ehlers Danlos syndrome (hEDS), a connective tissue disorder that not only explains why my ribs always feel broken, but also why I’m always covered in unexplained bruises, why I sprain my ankles too often, why my vision changed for no reason, why my skin is baby soft, and why I crave salt.

And so many doctors missed it. And I can’t get it out of my head.

Like the doctor at Loyola who told me to stop coming to see him because there was nothing else he could do about my pain.

And the other doctor at Loyola who looked right at me while I was sitting on the exam table in just a paper-thin gown and said, “Well there are two options. You either woke up with a completely unexplainable pain, or you’re a great actress.”

I was so caught off guard that I didn’t even realize he was accusing me of trying to get drugs for like a full 30 seconds.

I also hate literally every single doctor at the Mayo Clinic that missed this crap. You know how easy it is to do an initial test for hEDS?

Doctor: "Can you bend your thumb to your wrist?"

Patient: "Yes."

Doctor: "Yeah, you probably have it. Let’s do a full evaluation."

IT’S THAT EASY!!!

The Mayo Clinic missed it because they were obsessed with me going to their rehab clinic and getting off opioids, despite the fact that it wasn’t covered by my insurance and that they required a $35,000 upfront payment.

So yes, I hate all of you.

I also hate every single chiropractor I ever saw. Seriously, all you guys do is see people in pain, and it never crosses your mind to evaluate for EDS? Why are you not asking every single patient who walks through your doors if they can touch their thumb to their wrist? What is wrong with you?

Not to mention the fact that chiropractors have to be super careful with EDS patients, if they treat them at all, because things can dislocate and all that. It’s irresponsible of you not to be evaluating every single patient for EDS.

I also hate the pain specialist who berated me for not wanting a spinal cord stimulator. If he had evaluated me for EDS, he would have known that a spinal cord stimulator would have probably been a horrible idea for me. Like chiropractors, all pain specialists do is see people in pain. They should be evaluating every single patient they see for EDS too! 

The whole thing is so infuriating and frustrating. I sincerely wish I could go back to every single doctor I have seen over the last five years and personally tell all of them how much I hate them. And then I wish I could tell all of them to freaking check people for EDS. But I can’t do that. All I can do is write this letter and then try to move forward with my new life and my new diagnosis.

But if you’re a pain patient and you can touch your thumb to your wrist, get checked for EDS. Seriously.

And if you’re a doctor, do better.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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.

Living in Denial About the Overdose Crisis

By Ann Marie Gaudon, Columnist

Most of us know that denial of reality exists, but why is this so? How can humans with the ability to consider, evaluate, analyze and resolve complex problems ignore the facts? Even when ignoring the truth might lead to disastrous results?

Conceived by Sigmund Freud as a defense mechanism (to “defend” us against that which we do not want to feel), denial has been a concept for many decades. To over-simplify the premise, it’s a belief that something is either true or false when the facts say otherwise. Why would we do this? It’s because people experience a broad range of powerful emotions and intentions, such as greed, pride, revenge, fear, desire and a need for status – just to name a few. The have a strong influence over our ability to interpret facts.

When the Canadian government introduced the 2017 Canadian Guideline for Opioid Therapy, the creators were in denial. They ignored medical facts about chronic pain and turned pain sufferers into sacrificial lambs for people abusing illicit opioids. Patients and doctors tried to tell the truth but were not allowed a seat at the table with the so-called “experts.”

Chronic pain patients have never, ever, had their pain needs met and now they fare much worse. They are in more pain and experience more death and disability due to forced tapering and suicide.

Deniers yell loud and long that opioid pain medications are not effective, dangerous, addictive and will kill you in the end. Except that the evidence does not support that. Those with the worst pain have necessarily taken opioid medications to cope. It was their strongest weapon and were usually taken without danger, addiction or death. Opioids gave them effective pain relief that helped them regain function in everyday life.  Deniers will neither believe nor admit to this.

Let’s take a look at some of the strong influences which spur deniers to ignore the facts. We can see through many interviews and articles that McMaster University’s chosen group for creating the Canadian guideline enjoyed inflated reputations as “progressive thought leaders” who were “experts in pain management.” Add in the prestige and desire for status that comes from speaking engagements, media interviews, and more committees to participate in. Imagine the pride and prestige from conducting more studies (despite knowing little about the study area), and let’s not forget the enormous sums of monies paid to them by our government.

Greed, desire and a need for status can easily veto reality. So can feelings of morality and “doing the right thing” for people, while living under the fictitious perception that they are making positive inroads into addiction and overdose deaths while saving chronic pain patients from themselves.

In the real world, what has been the impact of the guideline on addiction? Nothing.

What has been the impact on pain patients? Devastation.

Most people can’t seem to figure out why the very same dreadful outcomes keep happening until they are knee-deep in it. Health Canada said this week that over 4,000 Canadians died from drug overdoses in 2017, the most ever. Most of those deaths – 72 percent – were caused by illicit fentanyl, not prescription pain medication.

Jordan Westfall, President of the Canadian Association of People Who Use Drugs, was bang on when he wrote in the Huffington Post that “it should shame this country to no end that our federal government is still afraid to see this epidemic for what it is in reality… What’s killing people is drug overdose and an apathetic government.”

May I add that what has never been killing people are chronic pain patients and their medications. Remorse and shame are powerful motivators for living in denial. Deniers continue to believe that punishing patients will somehow decrease the alarming rate of overdose deaths.

Chronic pain patients have always known the emperor has no clothes. It is a fact that all over North America prescriptions for opioids continue to go down, while overdose deaths continue to go up.  Does this suggest a statistically significant relationship between prescription analgesics and overdose deaths?  Yet the deniers continue with the same old agenda, despite the disastrous situation they have created.

There is an annoying little fact about denial. It doesn’t work in the long-term. Reality always wins out and when that happens, the next step for the deniers will be to place misdirected blame onto someone else. Count on it. It’s already happening. Doctors put the blame on the guideline’s creators and the creators reply, “No, no, no…it’s the doctors who have misunderstood the guideline.”

Here’s a message to the Canadian government and to the plethora of advisory groups, committees, response teams, et cetera and ad nauseam that are funded with taxpayers’ money to deny the facts:

When you are consistently creating the same disastrous outcome over and over again, you are in denial. And if this shameful situation continues, it will only lead to more suffering and deaths.

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.

4 Alternative Therapies That Help Lower Pain Levels

By Barby Ingle, Columnist

This is the 11th month of my series on alternative therapies for chronic pain management. As I have stressed month after month, each of us is different, even if we are living with the same diseases. No one treatment works for everyone. We must find creative and effective ways to get our pain levels lower.

This month I am shining a spotlight on four treatments that may help you or your loved one in chronic pain: Quell, radiofrequency ablations, reflexology and sonopuncture, also known as sound therapy. I have tried all four of these treatments with varying degrees of success.

Quell

Quell is a wearable medical device that uses electric nerve stimulation to deliver relief from chronic pain. I have tried this device and passed it on to some of my friends with back, arthritis, nerve, leg and foot pain. For me, the relief was not as significant as I had hoped, but I have a friend who has used it daily for a year and swears that it helps her leg pain.

NeuroMetrix, the maker of Quell, designed the device to be worn on the upper calf muscle. It was small enough to wear under my sweatpants and not too big or bulky to get in the way. The device sends neural pulses through the central nervous system to the brain to trigger the body’s own pain blockers. It has a variety of stimulation patterns and sleep modes, and the intensity of therapy can be adjusted through an app.

If you have tried a TENS unit or Calmare and gotten some relief, this might be a successful tool to help you manage your pain. A Quell starter kit costs $249. Each unit comes with the device, leg band, two electrodes and charging cords. You have to replace the electrodes about every two weeks with normal use, but the battery is rechargeable.

I believe Quell is an option that is worth looking into and they have a 60-day moneyback guarantee if it doesn’t help you.

image courtesy neurometrix

Radiofrequency Ablation

Radiofrequency ablation (RFA) uses heat to stop the transmission of pain. Radiofrequency waves “ablate” or burn the nerve that is causing the pain. The nerve stops sending pain signals until it regrows and heals from the ablation. RFA is most commonly used to treat chronic pain caused by arthritis and peripheral nerve pain.

I had RFA procedures 36 times from 2005 to 2008. It never took my pain away but did lower my pain levels and helped take the edge off. The doctor performed them on the ganglion nerve bundle in my neck. My insurance covered the procedures and it was helpful in keeping the need for high dose pain medications down.

RFA procedures are typically done in an outpatient setting under local anesthetics or conscious sedation anesthesia. The procedure is done under guidance imaging, like a CT scan or by ultrasound machine, by an interventional pain specialist.

RFA is said to help in treating the desired nerve without causing significant collateral damage to the tissue around where the ablation is performed. Still, a patient should take precautions and understand that the ablation can cause trauma or injury to the body, and conditions such as CRPS or arachnoiditis can be exacerbated long-term with this treatment.

When I was having RFA, it was one of the only options I had access to. Once less invasive options became available to me, I opted to stop these and nerve blocks all together.

Reflexology

Reflexology involves the application of pressure to the feet and hands with thumb, finger, and hand techniques. Reflexology is very relaxing and calming for me but there is no consensus among reflexologists about how it works, and some technicians are better at it than others.

Practitioners believe that there are specific areas in the hands and feet that correspond with organs in the “zones” of the body. There are five zones on each half of the body that reflexologists work on. In theory, they help stimulate blood flow and better blood flow leads to better working organs and muscles

The research on reflexology is skimpy and it has not been proven as an effective treatment for any medical condition.  It’s more of an approach to health lifestyle living, which can be of benefit to pain patients. This can help lower blood pressure and relax a pained body by taking the edge off.

I can say reflexology did seem to help with my constipation issues, but I was doing it while taking OTC and prescription strength medications, as well as stretching and stomach massages.

Sonopuncture

Sonopuncture is also known as vibrational or sound therapy. The idea behind it is similar to that of acupuncture, although instead of needles they use sound waves. Sonopuncture practitioners believe that sound waves stimulate the body into healing.

Sonopuncture was recently highlighted on an episode of “Keeping Up with the Kardashians” when Kendall Jenner was going through some anxiety challenges. I have used sound therapy myself to help with the stress of living with chronic pain and find it relaxing and mentally therapeutic.

Typically, the patient lays down in a comfortable position on the floor or a massage table. The practitioner will used tools like a tuning fork, glass bowls, chimes, metal or electronic devices that emit harmonic sounds or vibrations on acupressure points for about a minute each.

This is a noninvasive therapy and is suitable for all ages. Since no needles are involved, it could be seen as an alternative to acupuncture. With one in four patients afraid of needles, this could be a great way to calm your nerves and mind to help manage the challenges of living with chronic pain.

If you are considering any of these alternative treatments, I encourage you to first talk with a medical professional who is familiar with your past and present care and can help you discover what would be appropriate for you.

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.

Doctor Shopping Has Always Been Rare

By Roger Chriss, Columnist

A commonly cited factor in the opioid crisis is "doctor shopping" -- the act of seeing multiple physicians in order to get an opioid prescription without medical justification. States like Indiana are passing prescribing laws with the specific goal of preventing doctor shopping in an effort to address the opioid crisis.

However, doctor shopping has not at any time in the past decade been a statistically significant factor in the opioid crisis.  The National Institute of Drug Abuse tells us that only one out of every 143 patients who received a prescription for an opioid painkiller in 2008 obtained prescriptions from multiple physicians "in a pattern that suggests misuse or abuse of the drugs." That’s a rate of about 0.7 percent.

The importance of doctor shopping over the last decade was not because of frequency -- it has more to do with quantity. Research shows that the 0.7% of people who doctor-shopped were buying about 2 percent of the prescriptions for opioid medications, constituting about 4% of the amount dispensed.

Moreover, these doctor-shoppers tended to be young, to pay in cash, and to see five or six prescribers in a short period of time, so they are easily identifiable and can be thwarted with prescription drug monitoring programs (PDMP’s).

Diversion prevention had long been seen as important. Back in 1999, the Drug Enforcement Administration published “Don’t Be Scammed by a Drug Abuser,” which included advice to doctors and pharmacists on how to recognize drug abusers and prevent doctor-shopping. And states like Washington specifically list doctor shopping among the indicators of opioid addiction in prescribing guidelines, making recognition and intervention key goals for prescribers. 

These efforts have paid off. A study in the journal Substance Abuse found that the number of prescriptions diverted fell from approximately 4.30 million (1.75% of all prescriptions) in 2008 to approximately 3.37 million (1.27% of all prescriptions) in 2012. The study concluded that “diversion control efforts have likely been effective.”

Similarly, Pharmacy Times reported a 40% decrease in doctor shopping in West Virginia between 2014 and 2015, thanks in part to efforts by that state’s Board of Pharmacy Controlled Substance Monitoring Program.

The Inspector General of the Department of Health and Human Services found in 2017 that among 43.6 million Medicare beneficiaries, only 22,308 “appeared to be doctor shopping.” That’s a minuscule rate of 0.05 percent.

“You have this narrative that there are these opioid shoppers and rogue prescribers and they’re driving the epidemic, and in fact the data suggests otherwise,” says Dr. Caleb Alexander, who co-authored a 2017 study in the journal Addiction.

"The study found that of those prescribed opioids in 2015, doctor shoppers were exceedingly rare, making up less than one percent of prescription opioid users,” Alexander told Mother Jones.

Doctor shopping is still a problem in other contexts. Opioids are not the only class of medication that people seek to obtain illicitly for a variety of reasons, from hypochondriasis to malingering. PDMPs and other law enforcement efforts have a useful role to play in addressing these issues, and the opioid crisis requires ongoing efforts to prevent drug theft and diversion at all levels of the supply chain.

But claims that doctor shopping is a significant factor in the opioid crisis are mistaken. Doctor shopping was not significant in 2008, and measures to reduce diversion have succeeded, making doctor shopping in 2018 that much rarer.

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.

How I Started Telling People I Have EDS

By Crystal Lindell, Columnist

One of the first people I told about my new Hypermobile Ehlers-Danlos syndrome (hEDS) diagnosis was a local politician.

I was still trying to get a feel for how the letters EDS tasted on my lips. How they felt in my breath. How people would react when I said them. And truth be told, this was when doctors were telling me I probably had it, but before I was officially diagnosed — that came later.

He didn’t know he was among the first people I told — that he was a test case. But there we were, at a local Democrats meeting and he asked me about medical marijuana, and I decided to go for it. 

“I actually have EDS,” I said. “My thumb touches my wrist, want to see? Yes, marijuana should be legalized. No, it won’t help everyone.”

He had the response most people seem to have.

“Maybe it will get better?”

“It won’t get better,” I told him.

“Yeah, but maybe it will! Once, I was sick and then I got better. So maybe you will get better.”

“It won’t.”

I get it. Nobody wants to really understand that being born in the wrong family is enough to sentence you to a lifetime of weak ankles and debilitating pain. It’s hard to understand that. It’s hard to accept that. It’s a lot easier to believe someone might get better.

It’s been hard for me to accept that. And harder still to say it out loud.

I have found though that it feels easier to lay the news on random acquaintances. The Tinder guy I met once. The woman who expertly bleaches my hair at the over-priced salon. The clerk at Walgreen's ringing up my pain medications.

There’s something to be said for telling random strangers something so overwhelming. It greatly reduces the consequences of your words — and of their reaction.

My initial instinct was to tell the people closest to me, my inner circle, first. But that quickly become completely overwhelming. Those people care way too much about me. They take it way too hard. It cuts too deep.

No, strangers are much better. They are morbidly impressed with my thumb to wrist trick. They are able to distance themselves from the depressing, long-term aspects of the diagnosis and ask horrifically, wonderful mundane questions like, “What does EDS stand for?”

And they never stop to think about what it might mean for my future. That’s my favorite part. Because the future looks very scary right now. And I need to do my best to stay in the present.

I have forced myself to pepper in the tougher conversations with the people who care about me. The late-nights over tears with my best friend wondering what this might mean for my future. Asking things like, what if I can never kids? And even if I can, do I want to risk passing it on to them?

Will I need assisted care sooner than most? How will I ever explain my health to future lovers? Why did it take so excessively long to get the diagnosis? How much of my life was wasted waiting for it? What could have been different if only I had known sooner? Will my siblings need to be evaluated? And what happens if they have it too?

All the things that fill me with grief and despair if I let them.

But strangers never ask questions like that. And even if they do, they don’t actually care about the answers that much. And I love that about them.

Eventually, hopefully, it will just become one more things about me. I’m blonde, I don’t like Trump, I love Burn Notice, I eat too much Taco Bell, and I have hEDS. It’s part of who I am, but not the whole part, or even the most important part. Just another casual fact in my Instagram bio next to things like, “I like lipstick.”

And no, I won’t actually ever getter better, but eventually, hopefully, I’ll get better at having hEDS and telling people about it.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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.

A Nightmare Experience With Surgery

By Rochelle Odell, Columnist

I have been warning my “healthy” family and friends that the opioid epidemic and the backlash against prescription opioids would affect them at some point. My recent nightmare of a surgery may prove that the time may now be at hand. 

On February 2, I underwent what normally would be minor surgery to remove a catheter -- called a portacath -- that had become dislodged. For patients with Complex Regional Pain Syndrome (CRPS), there is no such thing as a minor procedure and my experience became a prime example of what could go wrong.

My friend Debbie drove me to the hospital where the surgery was performed. I have undergone over 40 procedures for CRPS and I always become apprehensive, as any patient facing surgery should be. I told Debbie I did not have a warm toasty feeling about the surgery. I was frightened, a feeling I don't usually experience. But this time I did.

Before I was taken back to pre-op, Debbie asked me if I would like to pray. Thankful for the thought, I responded yes. It did not alleviate the feeling of dread nagging at me, but I hoped God would protect me.

Once in pre-op, the nurse went over my extensive allergy list. Believe me, it's long. I am allergic to almost all antibiotics, including penicillin, along with some opioids like Demerol and methadone, as well as aspirin and NSAID's. Betadine causes blisters and a horrible rash. I’m also allergic to most medical tape, including cloth, plastic, silk and paper tapes. The only one I can tolerate is Hypafix. It's a soft adhesive that allows the skin to breathe. I was very vocal about that.

The nurse asked what kind of surgery I was about to undergo and why. I told her it was because I don't have any good veins, never have, and that a catheter was a necessary evil. Without one, if I were to pass out or become very ill, dying could be a real possibility.

I told her she would only got two tries for the IV line I would need for surgery. I am not a pin cushion and multiple needle pricks could cause a major pain flare. She started the IV on the second try.

The surgeon and anesthesiologist then came to see me. I explained how nervous I was and that I honestly was very close to walking out. I should have done that. I could tell the surgeon had no clue what CRPS was or how to treat me post-op. That is not unusual, a lot of doctors have no clue what it is, and that extra steps are needed to keep a major pain flare from happening.

Even the anesthesiologist seemed clueless about CRPS. I thought that odd, since anesthesiologists are often pain management physicians. He kept telling me don't worry, once in the operating room I would be out soon.

Four hours later I was taken to the operating room. I told the anesthesiologist that I forgot to add fentanyl to my allergy list. It gives me a smothering feeling and can't breathe. I also told him I wanted an LMA mask, because being intubated causes my asthma to flare. He told me he would use the mask, but he wanted to use fentanyl and that if I stopped breathing he would intubate me.

What is wrong with this explanation? Use something other than fentanyl and you won't have to intubate me. I also asked the surgeon to place me on IV antibiotics, as I have a long history of staph and MRSA infections.

Upon coming out of anesthesia, my throat was killing me. I knew he must have intubated me and used a drug I didn't want. The pain was excruciating. I was given small doses of Dilaudid and oxycodone, which did absolutely zip for me.

They also gave me IV Tylenol. Really, Tylenol post-op in a CRPS patient? The recovery room nurse was trying to console me as I was in tears.  Any nurse I dealt with said they were trying to make sure I didn't die of an opioid overdose. That took the cake, the minuscule doses I received were obviously not working, so an opioid overdose certainly would not happen.

One nurse told me my pain was emotional pain. I should have screamed at her to get away from me, but I was in so much pain I couldn't think clearly. I was kept for observation overnight, which brought more problems and the realization that the very thing I warned my healthy family and friends about was indeed at hand.

What kind of pain control do patients get now after surgery?  My surgeon was responsible for ordering all my meds, but how is a man who has no clue what CRPS is going to manage my pain? A man I had only seen one time before the surgery.

My RN was very sweet, but she too was stating what I think must be the hospital's policy. They do not want to provide opioid pain management.  Everyone is so convinced the opioid epidemic was and is caused by prescription opioid medication. It dawned on me, ignorance is alive and well and it must be contagious.

My ordeal continued to worsen. I looked at my surgery sites. Not only were my upper chest and right arm covered in the tell-tale orange color from Betadine, but there was medical tape. A big painful and very itchy rash had developed.

My skin was driving me nuts. I asked the nurse to remove the tape and use non-stick pads and Hypafix, but she refused. Didn't anyone read my allergy list? Why ask for one if you are going to ignore it? The surgeon ordered Benadryl cream for my arm. It helped a little and I did get one injection of IV Benadryl, but that was it. I received less medication in the hospital than I was taking at home.

After a long painful night, I told the nurse I would refuse to see the surgeon. Anyone who causes a patient as much pain as he did is one I will not see again. The nurse said he had to see me in order to release me. I told her to tell him to have a different doctor release me, as I did not want to see him. I was livid. The morning I was released I removed the tape, as I could no longer tolerate it. She helped me cover the area with sterile gauze.

As soon as I got home I cleaned the surgery area thoroughly and made an occlusive dressing over the two surgical sites. The next morning my whole upper right chest was covered with tiny blisters and a nasty looking rash. My friend took pictures for me.  The asthma flare I was afraid of was in full swing and I was running a temperature of 102.  I could barely breath and my pain was completely out of control.

I had a temperature for three weeks, and six weeks later I am still coughing up yellow gunk. That could have easily been prevented, but what do I know, I am just the patient.  Because I refused to see the surgeon for a post-op checkup, my primary care provider sent me a letter informing me I was trying to direct my care and was argumentative. He would only treat me for 30 more days and I needed to find a new primary care physician.

In the past I might have been upset with a letter like that, but since this opioid epidemic has affected me so negatively, I simply do not want to be seen by any physician who doesn't try to understand how sick I am. I was in so much pain.  Wouldn't you try to direct your care at that point?

My ordeal has not ended. As of this writing, the whole port area and catheter tubing are swollen and look infected. Have I gotten it checked yet? Nope. I have literally been frozen in place by fear, a fear I have never experienced before. I know this will require more surgery to remove and replace the portacath. Just thinking about it scares me.

All of this could have been avoided if my allergy list had been read, if there had been adequate pain management, and if IV antibiotics had been started. If this is the future of medical care, I may reconsider seeing any doctor. It just isn't worth the stress and pain.

Rochelle Odell lives in California. She’s lived for nearly 25 years with Complex Regional Pain Syndrome (CRPS/RSD).

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.