Taking Control of My Disability Case

By Mia Maysack, PNN Columnist

This stack of papers may not look like much, but it is my medically documented life beginning in the year 2002.

I personally highlighted them, so I can confidently report that the words “headache” and “migraine” are mentioned hundreds of times throughout.

I've been in the process of pursuing Social Security disability for about three years, which is not uncommon. Many have abused the system and there's also a high volume of claims being submitted and reviewed every day.

It took me a long time to even get to the point of filing for disability.

What does filing say about me as a person? Will I be judged? They probably won't even believe it. There are so many out there that need and deserve this more than me.

I still have those thoughts from time-to-time, even though my chronic migraines and cluster headaches have impacted every aspect of my life in a negative way – including employment.

I do not take the collection of denial letters I have received personally, as they've got to do what they can to weed out whoever isn't entirely legitimate. I know that I am, so I'll keep fighting.   

In recent months, another denial letter came. They acknowledged I am unwell but still deem me “well enough.” I decide to appeal immediately, as they only give you 60 days to do so. I also hired legal representation to help me through the process.

When I called them to check on the progress of my case, their tone felt dismissive. I would get put on hold before finishing a sentence or receive roundabout answers to basic questions. I’d also be reminded -- as if I wasn't already aware -- that disability court dates are scheduling 23 months from now.

I don't mind waiting, considering the fact I have no choice.  But it seemed as though I was being slow walked on a hamster wheel and not moving forward at all. This week I chose to contact Social Security directly and they informed me that, according to their records, there is no appeal on file for me at this time.

What does this mean, exactly?  In short, my legal representatives have not been covering their responsibilities to me as their client. I've been scraping by with 26 cents to my name while relying on their word, which I've now been convinced means next to nothing. 

I asked a Social Security representative what my next steps should be to take control and clean up this mess. He instructed me to visit their website and file an online appeal, which has since been done. Since I can’t account for where exactly all the paperwork I've been sending to my "help" has been going, I plan to stop in my local Social Security office to hand my stack of medical records directly to them.

We are our own best advocates, but how do I advocate for myself?  This is one way. I am the one who knows and understands the extent of how this debilitation has derailed just about every goal or dream I've set my sights on. But I won’t let that define me. I am more than my illness and won't allow my case to be dismissed.

I'm aware that representing myself may very well set this process back even further, but I've come to the realization that if we want something done right, we've got to make it happen ourselves.

At first, I felt disheartened because this seems like a full-time job in itself. But when others do not hold up their end, I now see this as an opportunity to raise awareness, address policy, educate and ultimately claim ownership of my own life. Now and in the future.

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

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.

Is My Life Worth Anything to Doctors and Politicians?

By Beth Sweet, Guest Columnist

I keep a journal and usually write about my symptoms and medical appointments. But today I vented and afterwards realized this might be something I should share.

I'm doing really bad with writing lately. It's just so hard to find the motivation to do anything. Between pain, exhaustion, migraines and IBS every day, I feel like crap! I'm so sick of feeling like this. I just want to feel like a normal human being again and not wake up every day realizing that isn't going to happen.

Lately I've been wondering if I even have fibromyalgia or if I was misdiagnosed. We have tried so many treatments for it and none of them work. I feel like a guinea pig half the time. Do doctors even know what they are doing?

I've tried over 19 medications and treatments. So far, the only thing that helps is what all the doctors say isn't recommended for fibro and that's oxycodone. I'm in my own body, know what I feel, and what works. But I'm too afraid to ask my doctor for a therapeutic dose instead of a bare minimum dose that only gets me a few hours of relief a day.

All because of this damned opioid epidemic!

They freak out about addicts overdosing on opioid medication, but addicts will find a fix even without prescriptions. What about chronic pain patients who are killing themselves because they can't get treatment for their pain?

I wish the politicians and lawmakers could suffer from chronic pain for a while and get treated like we are. I bet then the laws would change! I don't think they could survive it.

BETH SWEET

I'M SICK OF PAIN! Sick of crushing, aching, searing, cramping, stabbing, stiff, radiating, grinding, burning, tingling, constant pain. When I sit, stand, walk or lay in one position for too long. Headaches and migraines over half the month. PAIN ALL THE TIME!

But I can't ask a doctor for what I know works because everyone is in a panic about opioids. I am on the lowest possible dose. I get just enough for 4-6 hours of relief a day! God forbid I have a flare that makes it nearly impossible to move and lasts for days. It's not fair!

I want to go to church.

I want to go to my kids’ events

I want to be able to earn an income and be a functioning member of society

I want to not have my kids feel like they must take care of me. It's supposed to be the other way around!

I want to get well, but that's never going to happen. I must live with the fact that I am going to feel like crap on varying levels for the rest of my life.

Think about that. If someone told you that from this moment until the day you die you are going to be in pain, exhausted and unable to lead a normal life. That we don't know how to cure you or even if there is a cure. We aren't even sure what's wrong with you. We've tried everything and none of it has worked. Maybe it's all in your head.

How would that make you feel? Frustrated? Hopeless? Pissed? Sad?

And what if those same people who told you they don't fully understand your illness will not give you the one drug that gives you relief because "it's not an approved treatment for your diagnosis." They’ve already admitted knowing very little about it anyway!

What if they treated you like a drug addict because you asked for a medication that finally gives you some pain relief?  I have no problem getting medication for my thyroid, insulin resistance, anemia, IBS or any of my other health issues. But God forbid I ask for treatment for chronic pain.

I don't take those meds to get high. I don't even understand how people do, they don't affect me that way. I take them to get some of my life back. Is my life worth anything to these doctors and politicians?  I'm 38 and a hermit because of my pain and health issues. I've been sick for years and getting worse.  

I want to make something clear. I'm not going to kill myself. I have my family to live for. Even when my life feels worthless, I think of them. But not every chronic pain paint has that because this illness causes isolation and hopelessness. And no, we aren't in pain because we are depressed. We are depressed because we are in pain. There is a difference, so please stop giving us antidepressants to use as pain meds!

Stop ignoring chronic pain patients. Some are at the point where they can't take the pain anymore and the doctors that could save their lives are too concerned with the opioid epidemic to help!

I hope to find a doctor someday that thinks my life is worth living.

Beth Sweet lives in Michigan.

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.

Scoring Goals With Your Goals

By Barby Ingle, PNN Columnist

When it comes to living with chronic pain and illness, the way we motivate ourselves and achieve goals can change. I know it did for me.

There are two types of goals: mastery and performance. Before I had a chronic illness, I was performance oriented. I was wrapped up in demonstrating my competence and abilities, especially when it came to my job. Suddenly that was not possible anymore. I had to adapt, change and learn how to master by goals if I was going to manage the chronic pain portion of my life. That’s where I am now.

Knowing someone’s goals helps us understand what motivates them and predict if there is a likelihood of achieving and sustaining their goals. It can also help us decide if we have a similar goal that can be worked on together, if we should partner with them or if we should move on to someone else.

In a doctor-patient relationship, if a doctor can’t help you achieve your goals with the tools and resources they have to offer, then it’s probably time to find a new doctor.

Performance oriented goals (also known as ego goals) are characterized by the belief that success is the result of superior ability. Performance oriented individuals seek to outperform others and demonstrate their ability.

When patients are working to complete this type of goal, they’re often concerned about how they will be judged relative to others. An example of this would be a patient who wants their doctor to love them the most and call them their “best” patient. They are competing against other patients in a game with only one winner.

I believe mastery goals will prove to be more effective in the long run. Mastery goals are also known as learning goals. They are goals where the person is focused on learning, mastering tasks, self-improvement and developing new skills. An example of a master-oriented goal would be organizing your medical records.

When a chronic pain patient masters a skill at their own pace and level – not competing with others --- it increases their resilience, quest for knowledge and enjoyment of life. One of my favorite quotes is “Winners don’t always win, but they never give up.” When we become mastery goal setters, we can accomplish more without societal pressures and take our time knowing that we will make mistakes and its okay.

Setting a mastery goal starts with taking a moment to think about what you want to accomplish over the next few weeks or months. Is there something you have been wanting to try? Something that will take you longer than others who are healthier? Are you up for that challenge?

Ask yourself what you want to learn. Then make it a learning goal. You do this by being specific. Don’t just say, “I want to organize my medical records.” Do you want your records in notebooks, on a computer, a USB, or in your patient portals? Do you want to update or correct your records” and send copies to your doctors? Do you want to start from today and only do new records or go back and organize everything?

Remember, your goal should be achievable in a few weeks or months. Otherwise you are setting yourself up for failure. Decide on a goal that is attainable. What past skills do you have that can help you out? Think through your goal to make sure it is realistic. Are you able to work on multiple goals at the same time or do you need to break this one down further to make it doable? Think about your current abilities and how they will help you achieve your goal.

How will you measure your success? Decide at the start how you will measure your progress. Try to organize five pages of medical records a day or do whatever you can. On some days you’ll accomplish more than others.

Ready to “goal” for it? Share in the comment section below what your goal will be in 2019. Sharing your goal can help you stay motivated. I wish each of you well on your goals and success in accomplishing the activities you set out to accomplish!  

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.

Ignoring the Evidence in Canada

By Marvin Ross, Guest Columnist

For those of us north of the border who are defending against the assault on pain patients, it was very gratifying to see the American Medical Association come out against the “inappropriate use” of the CDC guideline on opioid prescribing.

Sadly, we cannot hope that the Canadian Medical Association (CMA) will do the same. The CMA embraced the Canadian guideline – which is modeled after the CDC’s -- and argued for better evidence on the safety and efficacy of prescription opioids.

Sadly, how Canadian officials evaluate evidence is suspect. Jason Busse, the chiropractor who chaired the Canadian guideline, contends that no randomized controlled trials (RCTs) have been done on opioids that follow patients for longer than six months. He tweeted that to me after I challenged him on the results of an analysis that concluded that “to dismiss trials as ‘inadequate’ if their observation period is a year or less is inconsistent with current regulatory standards.”

I pointed out that multiple published studies and over 1.6 million patients maintained on doses over 200mg MME (morphine milligram equivalent) disprove his claim opioids don’t work long term.

Busse’s reply was, “Yes - the CDC guideline excluded all trials of less than 1 year duration. The Canadian guideline did not. Nonetheless, there are no RCTs of opioids that follow pts. For more than 6 months.”

He did not reply to my comment that Prozac was approved for use based on trails of only 12 weeks duration and that many patients take anti-depressants for years. It has always seemed strange to me that McMaster University, which led the development of the Canadian guideline, is the home to evidence based medicine. One of the co-ordinators of the guideline is Dr. Gordon Guyatt, who is credited as the one who brought evidence based studies to the world.

The most flagrant avoidance of evidence is by Health Canada, which continues to insist that high rates of opioid prescribing is one of the main causes of the opioid crisis. Ann Marie Gaudon, a columnist for PNN, has been attempting to find out what evidence Health Canada has to make that claim.

Not only have they not responded to her query, but her call to their office at the end of October resulted in one of the most bizarre phone calls ever heard. Syndicated radio show host Roy Green devoted two episodes to what can only be described as a “Who's on First” discussion with a government official.

Health Canada now mandates that every prescription issued for an opioid carry a sticker and a leaflet warning of addiction risks. A total wasted effort. The evidence that prescriptions opioids are a significant part of the problem is lacking.

The Ontario Drug Policy Research Network just released a database that disproves claims that prescriptions are a major cause of opioid overdoses. It shows that opioid prescriptions in Ontario have been declining for years, as they have in the United States.  About two-thirds of the opioid prescriptions written in 2015 were for patients over the age of 45 and less than 2 percent were for fentanyl.

Contrast those stats to information put out by this same agency on opioid deaths. Accidental overdoses among those 15 to 44 accounted for nearly 60% of opioid deaths. And the most common opioid involved in overdoses was fentanyl – most of it illicit and obtained on the black market.

It would be very refreshing if governments and regulators in Canada actually looked at their own data before cracking down on prescriptions for legitimate pain sufferers. That may be too much to expect, but one can always hope.

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.

Lessons from 'American Overdose' on the Opioid Crisis

By Roger Chriss, PNN Columnist

The book “American Overdose: The Opioid Tragedy in Three Acts” by Chris McGreal takes a hard look at the opioid crisis. The book focuses on the legal and political side of the crisis, along with a history of Purdue Pharma and OxyContin, and a detailed description of pill mills and rogue pharmacies in Appalachia.

“It is a tragedy forged by the capture of medical policy by corporations and the failure of institutions in their duty to protect Americans,” is how McGreal describes the genesis and evolution of the crisis.

The book highlights the massive collusion and corruption in communities in West Virginia and Kentucky, leading to the Williamson Wellness Center and other pill mills that were protected by law enforcement, ignored by state and federal regulators, and encouraged or exploited by drug manufacturers and distributors.

McGreal also traces the history of Purdue and the Sackler family, and how their efforts to improve pain management led to the creation of the blockbuster drug OxyContin. He explains how Purdue’s marketing claims “proved to be demonstrably false, including an assertion that addiction is rare when opioids are taken under a doctor’s care.”

However, McGreal does not depict Purdue as a lone bad actor. Instead, federal and state dysfunction and disinterest contributed to the crisis. “The FDA wasn’t the only one to drop the ball. A clutch of federal agencies with long names have responsibility for combating drug addiction and overdose,” he wrote. And they all failed.

The failure was both systemic and systematic. As the crisis unfolded, local law enforcement had to contend with “indifference and what they regarded as the political cowardice of the system.” Perhaps more important than the cowardice and corruption was greed, not just corporate greed but also local greed for the money brought in by pill mills: “The businesses did good. You had pharmacies that were doing really good.”

The problem soon extended far beyond Appalachia. Among the earliest and biggest pill mills was American Pain, set up in 2007 near Fort Lauderdale, Florida by twin brothers Chris and Jeff George – neither of whom had medical training.

Opioid addiction also rose across the nation because of cultural factors, writes McGreal. In Utah, “the dominance of the conservative Church of Latter-day Saints appeared to be a cause of addiction, not a deterrent” because of the church’s “toxic perfectionism.”

Government agencies and officials were encouraged to ignore it all. Florida Sen. Marco Rubio’s office wasn’t interested in pursuing pill mills and the “political leadership within Florida wasn’t much better.”

Rudy Giuliani, Eric Holder, and James Comey all helped Purdue, according to McGreal, by delaying investigations of the company as addiction and overdose rates rose rapidly in the 2000’s.

The CDC’s involvement is described as delayed and dysfunctional. "Until 1998 the United States used a classification system lumping heroin, morphine, and prescription opiate deaths together," McGreal points out. Even when CDC researcher Len Paulozzi documented rising trends in overdose deaths, no one paid serious attention until Thomas Frieden, MD, became director. Even then, serious flaws remain in how the CDC reports on overdose deaths.  

Anti-opioid activists Andrew Kolodny, MD, founder of Physicians for Responsible Opioid Prescribing (PROP), and PROP President Jane Ballantyne, MD, sounded warnings about opioids, but offered little in the way of solutions outside of cutting off prescriptions. Many of their warnings proved to be unfounded, in particular with the opioid analgesic Zohydro. The drug was approved by the FDA amid dire warnings of a major spike in addiction and overdoses, but “there was no great surge of overdoses because of Zohydro.”

“FDA officials don’t like Kolodny. They characterize him as unreasonable and difficult. One described him as a ‘complex character’,” McGreal writes.

Similarly, the 2016 CDC opioid prescribing guideline is described as too late to be useful. McGreal looks closely at the debate about the CDC guideline and recommendations from the 2017 opioid commission set up by President Trump. But despite these much-touted steps, “little changed on the ground for states desperate for treatment facilities and help with the social costs of the tragedy.”

The book concludes on a pessimistic note, captured in a comment from Nathaniel Katz, MD, about opioid addiction and overdose: "I don’t really see any prospect for intelligent policy in this area in the United States.”

McGreal summarizes his ideas with an indictment of American culture.

"In large parts of the United States, opioids were popular because they were a fix. A fix for emotional pain. A fix for failing bodies. A fix for struggling to make it in a society that promises so much, and judges by what is achieved, but turns it back on so many of those who fail to live up to that promise," he writes.

If “American Overdose” offers lessons, it is that the opioid crisis is a result not only corporate greed but also American culture; in particular politicians, regulators and a broader medical industry with agendas contrary to the public good. The book is an origin tale of the opioid crisis that offers little hope for the future.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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

Opioid Hysteria and the Demonizing of Dsuvia

By John Burke, Guest Columnist

Recently the FDA approved a new sublingual formulation of sufentanil -- called Dsuvia -- for the management of moderate to severe acute pain in hospital-like settings. This would include surgical centers and emergency departments.

When the FDA announced this approval, several so-called experts claimed that Dsuvia – which is a potent opioid – would worsen the already out of control opioid problem. They said it would quickly find its way to the streets of America and kill even more of our citizens addicted to opioids. They can’t imagine why the FDA would approve such a killer drug!

Dsuvia was originally developed by AcelRx Pharmaceuticals, in cooperation with the U.S. Department of Defense, to treat battlefield wounds. The single dose formulation is designed to enter your body and provide pain relief faster than the traditional intramuscular injections that are now standard in treating traumatic injuries.

I can only imagine the horrendous wounds that are present on the battlefield. Offering faster pain relief seems like a great option, to say the least!  

ACELRX PHARMACEUTICALS

Dsuvia will also be used in our nation’s emergency departments and other healthcare facilities to offer faster pain relief to patients who suffer traumatic injuries. The drug will not be available in retail pharmacies or for most prescribers to order up for a patient. Doctor shoppers, script scammers and others that prey on retail pharmacies will have no access to this pain reliever. Those involved in armed robberies or burglaries of retail pharmacies will also have zero access.

Who will have access to Dsuvia are healthcare employees -- nurses, doctors and other medical professionals who already have access to a whole host of opioid drugs. There is no question that Dsuvia could potentially be a target of a small group of professionals who suffer from addiction problems. However, the illegal diversion and sale of this specific medication seems less likely in healthcare facilities.

Dsuvia will be more easily identified when it is diverted due to its limited availability and usage. Addicted healthcare employees will likely opt for more commonly used opioids like morphine and hydromorphone rather than a rarely used medication that will be easily missed when diverted.

The other part of this equation, that was either not considered by critics or didn’t suit their narrative, is that diversion inside healthcare facilities virtually always involves self-addiction. This means that even if an opioid is stolen by an employee inside one of these facilities, it will rarely make it to the street and cause more deaths.  

AcelRx has already developed a Risk Evaluation and Mitigation Strategy (REMS) involving RADARS, a nationwide drug abuse surveillance system, to monitor any diversion of Dsuvia and provide quarterly reports to law enforcement. In the interest of full disclosure, I am on the Scientific Advisory Board of RADARS.

Dsuvia has great potential to provide quick relief to trauma patients in a focused setting. Its diversion potential, especially to the public, is almost nil. Demonizing a drug without any real knowledge of its legal distribution and potential for diversion is irresponsible to say the least.

The drug problem in America primarily involves street drugs such as heroin, illicit fentanyl, and more recently crystal methamphetamine and cocaine. Even as the prescribing of opioids has dropped over 30% in recent years, drug deaths continued to rise. The reason is the increased supply of street drugs supplied by cartels that continue to profit from our nation’s addiction.

Put the blame where it belongs, and don’t ostracize a legitimate new pain drug that any of us might need in an emergency.

John Burke spent nearly 50 years in drug and law enforcement in southwestern Ohio. John is a former president of the National Association of Drug Diversion Investigators and is the president and founder of the International Health Facility Diversion Association, a non-profit devoted to the issues surrounding the diversion of controlled substances from healthcare facilities.

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.

Is Palliative Care an Option for Chronic Pain Patients?

By Rochelle Odell, PNN Columnist

Most of us have heard about 2016 CDC Opioid Guideline, which is supposed to be a voluntary guideline for primary care physicians treating non-cancer pain.

What has happened? In the span of two years the guideline has seemingly become law. Countless pain patients have made the trek to their doctor dreading the thought that their lifeline -- opioid pain medication – will be reduced or even discontinued.

Pain patients are often forced into surgical procedures such as epidural steroid injections or implants of spinal cord stimulators and other medical devices. The implants and injections all too often create more problems than they help. I know because I have had three different stimulators implanted and removed, as well as two pain pumps. The devices ultimately damaged my spine, compounding my Complex Regional Pain Syndrome (CRPS). 

Many of us are told if we do not undergo these invasive procedures our opioid medication will be stopped.  We are then forced to find a new physician for pain medication, a search that is often futile.

What happened to “patient driven healthcare” and freedom of choice in the so-called opioid epidemic? Is there anything patients can do?

Yes, we can request our physician determine if we meet the requirements for palliative care, which is specifically exempt from the CDC guideline.

Palliative care is often confused with end-of-life or hospice care, but imminent death is not a requirement for palliative care. The CDC defines palliative care in a way that many chronic and intractable pain patients would qualify for:

“Palliative care is defined… as care that provides relief from pain and other symptoms, supports quality of life, and is focused on patients with serious advanced illness. Palliative care can begin early in the course of treatment for any serious illness that requires excellent management of pain or other distressing symptoms for cancer.”

The World Health Organization (WHO) takes a similar broad view of palliative care:

“Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

According to WHO, palliative care should include “a support system to help patients live as actively as possible” and “enhances quality of life.”

If these palliative care conditions are met, does it mean we are safe from having our opioid medication cutoff? Not necessarily. but it’s an option we should ask our doctors about.

Therein lies a possible roadblock. Too many physicians, nurses and healthcare organizations still associate palliative care with cancer and other diseases where the only outcome is death. 

The Alliance for the Treatment of Intractable Pain (ATIP) is working to enhance and clarify the definition of palliative care to include those suffering from chronic, intractable pain that may not be terminal. Cancer pain isn't necessarily different or anymore painful than the pain suffered by CRPS patients. Our pain is often worse, as there is no end in sight. The pain lasts a whole lifetime and we do not get better.

A case in point regarding the confusion over palliative care. A friend of mine was told that she qualified for palliative care. Great, one might think.  Her pain medication is still being prescribed, but her physician is afraid of losing his license and will not continue to prescribe her current dose or increase it. She will have to find a new pain management physician, assuming she can find one. 

I have been requesting for over two months that I be evaluated for palliative care, but my own pain management group "does not do palliative care." My case manager told me palliative care is only meant to keep the patient out the hospital.

My primary care physician's office has been working on my request and recently a doctor from Home Health Care came to my home to evaluate me. Not for palliative care, but for Transitional Care Management (TCM), a term I had not heard of. 

TCM is very much like palliative care in that the patient receives care from any needed medical specialty. A support system is put in place and whatever specialist I need to see will be covered.  The physician who did the evaluation based it not only on my medical records but by interviewing me and going over all my physical and mental health requirements. He noted I had been on high dose opioids and anti-anxiety medication and functioned with both them. He also recommended that my opioid medications be increased.

Will they be increased? I don't know yet, but a Home Health Care nurse will now be coming to my home on a regular basis. Unless I am unconscious and basically on death's door, I will not go to an emergency room for treatment. I refuse to wait hours on end only to be treated like a drug seeker. The nurse will come to my home and give me opioid medication if I need it. That is a definite plus and something I will not abuse.

These two avenues of palliative care and transitional care management appear to be a chronic pain patient's only options. Many doctors may not initiate either one. It is often the patient or patient's family who must push for care. Being alone and with no help means I will have to do more research and seek care even if it means contacting my physician's office multiple times. It’s the only option I have.

Rochelle Odell resides 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.

Learning to Cope With Loss

By Mia Maysack, PNN Columnist

There has never been an employment situation that has not been impacted by my chronic migraines, fibromyalgia and other health conditions. I'm a worker bee but pushing myself too hard for too long while trying to keep up has resulted in my inability to pursue aspirations that are not physically feasible.

The realization of not being able to live up to who you feel like you are is a tough one. A person cannot refrain from asking: What is wrong with me?

All the while, outsiders ask the same question, most with a hinge of disbelief pertaining to "invisible illness."

She looks and seems fine. Is anything really wrong with her?

In that regard, I've chosen to no longer stress over occasionally needing to wear my sunglasses indoors.

At least people can see those!

It can be a difficult concept to understand, how someone can seem fine one day, then be bedridden for the duration of any given week. Things we may have been able to do, even just the day before, vary moment by moment.

I’ve sensed an undertone of judgement regarding what taking proper care of myself looks like. A few examples of what I mean: 

“Must be nice to lie around in bed all day!”

“You’re still sick?”

“I have headaches too, but still manage to….”

In an effort to alleviate the pressure of these expectations, I've gotten to the point that I do my absolute best to avoid making commitments or plans. I only make them with those who understand my need for sudden disappearances, last minute cancellations, awkward positioning and random yoga stretches.

One of the greatest gifts I've ever given myself is taking good care of and putting myself first. Despite what seems to be a popular belief, that doesn’t mean trips to a day spa or an exotic beachfront. Pursuing self-care for me is the difference between being somewhat functional or a dungeon dweller.

Every time my health interferes with whatever I had my sights on, it’s like ripping gauze off a wound that’s not yet healed. It reopens its own spectrum of painful emotions, often leading to guilt over missing out and all those our absence is impacting. It’s a double-edged sword in a battle I seemingly cannot win.

It can be frustrating, but inward compassion is imperative. Think of it this way: When we know someone we care about is feeling unwell, what do we do? We offer support, advise them to rest, take the time they need, and do whatever is necessary for the sake of their health and healing.

We as chronic pain warriors deserve the same compassion, empathy, respect and self-care. I've learned over the years that forgiveness, patience and grace for ourselves is just as important as having that capacity for others.  

My experience has mostly been a lonesome one. Never once have I had a medical professional ask me how I am coping with these heavy burdens that are anticipated to be lifelong. I have still not been able to fully comprehend the gravity of what that diagnosis means.

It has been an excruciating process to get to where I am now. There's no guide book for this stuff, we gotta just keep trying until we find a way to make all of this serve us -- as opposed to the other way around.

I prefer now to find the positive in changes as they come, not worry about them until they do, and neglect the urge to over-analyze them long after they've arrived.  For me, it’s all about finding the joy, beauty and blessings in the given. There is always something to be appreciated and admired.

We must remain true to ourselves, even through and despite the turmoil of chronic pain. It may not reflect the vision we once had, but there’s no need to look back.  We are not headed in that direction anymore.  

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

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.

Lightening the Load Over the Holidays

By Carol Levy, PNN Columnist

There was a train full of sewage traveling through Alabama. One town found the smell so horrid, likening the stench to “rancid meat” or worse, that they refused permission for the train to enter the town or even stop to transfer loads.

Another town welcomed the train. “Let it come. The smell can't be as bad as they say. They're exaggerating,” they said.

But then the train arrived. The second town found the stench to be as utterly revolting and repulsive as the first town had said. The second town had to experience it firsthand before they would believe a train could emit such noxious smells.

Sound familiar? I’ve always felt that those of us with chronic pain are singled out in a similar way, when we are disbelieved and told the pain "is all in your head.”

But if it can happen when people have a freight train full of sewage in their backyard, and even they are not believed, it gives me hope. Maybe we are not so different after all.

What does this have to do with the holidays, you ask?

When I heard about the train and the reaction to it, it started me thinking. The holidays are fast approaching and so are all the dinners and social gatherings that come with them.

I see the worries starting as I read posts on Facebook and elsewhere. Will I be able to do whatever they ask me to do? Will I have the energy to stay and make small talk and play with the kids? Will my family and friends accept me as I am, respecting my limitations and boundaries?

We can only answer those questions in the theoretical. We don’t know what the reality will be, how we will be, and how others will be when the holidays arrive.

Maybe now is the time to prepare ourselves. To realize some people will be respectful, helpful, compassionate and empathetic; while others will turn their backs on our needs and us. We often already know who will do what. We know who thinks, “It's not so bad. You're exaggerating.”

And like the first town with the sewage train, the residents' lives brightened and the stench dissipated when they got rid of the train. That is the thing about visiting. You know you can leave.

As the holidays approach, it is important that we allow ourselves the freedom to accept the caring folk, as well as the uncaring; the kind as well as the nasty; and the helpful as well as the hurtful.

And, most important of all, we must accept ourselves and all that we are.

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.

Living with Chronic Pain: Acceptance or Denial?

By Ann Marie Gaudon, PNN Columnist

It’s commonly understood that chronic pain not only negatively influences our physical health, but also leads to changes in our sense of self, as well as how we experience the world around us.

An interesting Swedish study set out to explore these factors. Twenty people with long-standing musculoskeletal pain were involved. Each participant completed 20 “qualitative” interviews -- which means the questions were designed to lead to descriptive answers, not hard data such as numbers or graphs on a chart.

The opening question was asked like this: “Please describe your problems. I’m thinking of the problems that made you contact a physiotherapist?”

All of the questions were focused on the participant’s perception of his or her body and were open-ended enough to encourage them to provide a narrative of their lives. After the answers were collected and analyzed, four distinct typologies emerged.

Typology A: Surrendering to one’s fate

In this typology, subjects do not oppose their pained body. They accept that their pain cannot be eliminated, so why battle against it? They are aware of their limitations and adapted accordingly.

When you accept pain, you can still engage in more important (non-pain) aspects of life. The pained body becomes more integrated with life when the person trusts their ability to cope with the unpredictability of it. Listening to signals and adapting becomes the norm. One participant described it this way:

“No, I don’t rely on my body, because I never know when the pain will come… I always have to consider how to carry things through, what I am doing, why I do it… to prevent pain afterwards. It (the body) is with me and I am the one who decides”

Typology B: Accepting by an active process of change

In contrast to Typology A, in this typology people accept pain through deliberate and active coping strategies. Attitude is adapted in the face of the new reality of living with pain, and it becomes possible to undergo positive change and go on to a richer life.

The precondition for this change is believing that the body and soul are closely linked. Participants describe a previous total lack of body awareness that changes to a life where the body becomes a wise teacher. They look to the future with optimism, while realizing it will take great effort.

The integration of the aching body into life requires a trusting and hopeful cooperation between self and body; there is trust that the body will help even when in pain. The pain puts the body in the foreground. When pain is not being fought against, it enhances both body awareness and self-awareness. One description read like this:

“…growing consciousness is the only, the only way to take control of the pain.”

Typology C: Balancing between hope and resignation

Here researchers found that major changes in life brought on by constant pain put the subject into a state of ambivalence. There is a pendulum swing back and forth between accepting and rejecting the aching body. Hope sees a way forward, but time after time despair sets in.

Integrating the aching body into life becomes problematic and the relationship with the body seems unclear at best. The subject swings from listening to the body to avoiding it.

Accepting this burdened body is necessary to move forward, yet that change is not fully realized. Pain results in feelings of fear or worry. The cause of the pain is considered complex and the subject has a tendency to ignore warning signals.  An example of this:

“My pain started because I am too slender for cleaning work, I believe. This, I think, is how my pain all began but you go on and on and don’t listen to our body until it is too late.”

Typology D: Rejecting the body

In this typology, integrating the aching body into life is impossible and rejected. The word acceptance is considered an insult or a threat. The pain is impossible to accept. The aching body is an enemy, life is unfair and unsafe, and something worse may happen. The subject has no trust in the body and nothing helps.

Living in denial like this may be beneficial for overcoming a short-term crisis, yet the costs in the long run lead to an inability to cope. A quote from one participant:

“No, no, no, I won’t do it. No, I don’t know how my body will react in different situations… it is against me”

Clinical Implications

The results from this study indicate that chronic pain patients can be found along a broad spectrum from accepting to rejecting their aching bodies. Both body awareness and body reliance seemed to be important for acceptance to take place and for life to be manageable.

Reinforcing body awareness and reliance may be a possible way forward. Your body and life may not have played out how you had anticipated, but you can still adjust to life and living with a pained body.

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 War on Drugs Is a War Against People in Pain

By Liz Ott, Guest Columnist

First, I want to say that I absolutely love my pain management doctor. He's an extremely well trained and respected doctor who really cares about his patients. I can always tell when it's not good news for me when he walks into the exam room, because it visibly hurts him to be unable to help his patients. 

I have fibromyalgia, arthritis everywhere, torn and bulging cervical vertebrae, and had a total replacement of my left knee. I haven't done the right knee yet, which I'm afraid to even think about.

Earlier this year my doctor explained that he was required to reduce my pain medications. I was shocked. He explained that new opioid prescribing guidelines were requiring patients to be reduced across the board, regardless of their condition. My pain medication was cut by a third and I wasn't happy about it at all. Especially when I've signed a pain contract, never went to any other doctors seeking meds, followed their procedures, taken drug tests, etc.

Since the weather was warm, I figured I had time to adjust to the lower dose before it started getting colder. Little did I know, this was only the beginning. 

A few months later, the doctor had the same face and the same news. I had to be reduced again. Now I'm only getting about half the Percocet and morphine I was getting before. I could barely manage my pain in cold rainy weather even with the old doses.

I've gone from being a mostly well-managed pain patient to a woman living with the very real fear of one day going in and being told that I am not going to get any pain meds. Just take some aspirin and deal with it.

In addition to the two opiates, I also take gabapentin, a muscle relaxer and Celebrex to offset the reduction in opioids. They don’t work!

LIZ OTT

I have done nothing wrong, yet I'm being treated as an addict or criminal. I’ve been seeing the same pain management specialist since 2011. They know me. I don't abuse my meds, I take them as instructed and never had anything wrong with my drug screens. And yet I'm still being punished.

I've been out of work since 2017 and just got my medical retirement approved. I wasn't able to work even at my old dose. There have been emotional issues to contend with as well, like the sudden death of my husband.

Why are politicians making healthcare decisions for patients? Don't they know that this is going to cause the exact problem that they're trying to avoid? People who have been at the same doses for years who are suddenly not getting what they need will be desperate. They're going to resort to dangerous street drugs mixed with who knows what. Or risk breaking the law and use cannabis. They have no choice.

Yes, there is an opiate epidemic. I don't disagree with that. But chronic pain patients are being treated as addicts. They're being mandated into forced reduction by politicians, not doctors.

This must be dealt with another way or the statisticians will have another number to deal with: Suicides by pain patients who are unable to get relief. We would never limit insulin to a diabetic or heart medications to someone with heart disease. But it’s okay to keep cutting pain medications because they’re dangerous?

The black market street drugs have not been reduced at all. Just the legally prescribed pain meds. The war on drugs isn't against the illegal side. The real war is against people in pain.

Liz Ott lives in Texas.

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

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

Pain Patients and Doctors Have Civil Rights Too

By Richard Dobson, MD, Guest Columnist

In a recent column, I described the diversion of blame for the opioid crisis as an example of “Factitious Disorder Imposed on Another,” a psychiatric condition in which a person imposes an illness on someone who is not really sick.

Recently, the U.S. Department of Justice announced a plea deal in which a former police chief in Florida pleaded guilty to violating the civil rights of innocent people by making false arrests “under color of law.” I think there are some striking parallels between the way these innocent victims were treated and the way that chronic pain patients and their doctors are treated today.

For several years, Chief Raimundo Atesiano and officers in the Biscayne Park police department conspired to arrest innocent people, falsely accusing them of committing burglaries and robberies.  The arrests were based on phony evidence and confessions, all because Atesiano wanted to show he was tough on crime and solving cases.  Several officers plead guilty to the conspiracy and were prepared to testify against Artesiano when he entered his plea.

Let’s examine the logic of this case:

1. “A” is an innocent person who has committed no crime.

2. “B” is a criminal who has burglarized homes and cars.

3. “C” is a person in authority who blames “A” for the crimes committed by “B.”

“C” has not been able to apprehend “B” and does not have any leads on how to catch him.  However, by diverting blame to “A”, “C” can claim that he has a much higher rate of solving crimes. “C” is rewarded for this illegal behavior because the citizens of Biscayne Park believe the police department is doing a much better job than it actually is.

Now change the focus to the scenario of Factitious Disease Imposed on Another to chronic pain patients and their doctors.

Just as the police in Biscayne Park were charged with using factitious evidence to arrest innocent people, regulators and law enforcement agencies like the CDC and DEA are using misleading information and overdose statistics to go after prescription opioids, when the real problem is those who misuse black market drugs.

Doctors who still treat chronic pain are also being targeted to end the legitimate medical distribution of opioid medication to patients. They are sanctioned with loss of license and some are even imprisoned for “overprescribing.”

Meanwhile, the real source of the public health problem – drug dealers, addicts and recreational users -- are largely going unpunished. It is these non-medical users that account for the vast majority of overdoses.

It was a civil rights violation for Atesiano and his officers to falsely blame innocent people while ignoring the real criminals. In similar fashion, equal justice demands that it should be a violation of the civil rights of pain patients and doctors to be factitiously blamed for the crimes of illicit substance use and drug trafficking.

“The right to be free from false arrests is fundamental to our Constitution and system of justice,” Acting Assistant Attorney General John Gore said when announcing the plea deal with Atesiano.

“Law enforcement officers who abuse their authority and deny any individual this right will be held accountable. As the Chief of Police, Defendant Atesiano was trusted by his community to lead their police officers by example; he has failed his community and the officers of Biscayne Park.”

The same standard applied to Atesiano should be applied equally to those who falsely accuse pain patients and doctors whose constitutional rights are being violated today.

Richard Dobson, MD, worked as a physician in the Rochester, New York area for over 30 years, treating and rehabilitating people suffering from chronic pain, mostly as the result of work or motor vehicle accidents.  He is now retired.  

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.

Social Media’s Role in the Opioid Epidemic

By Douglas and Karen Hughes, Guest Columnists

Drug epidemics since 1900 are dynamic and our hyper-information age makes ours even more pronounced. The so-called “opioid epidemic” is contingent upon socioeconomic demand and available drug supply. To fully understand it, we must look beyond opioid medication as the sole contributing factor.

Social media could be one cause that everyone has overlooked.

Overprescribing of opioids was initially the problem and it helped fill numerous medicine cabinets. Coincidentally, this occurred at about the same time as the explosion of cell phones, texting and social media, and the resultant peer-driven social narrative.

Instantaneous information exchange brought teenagers into contact with “high school druggies” — which their pre-cell phone parents knew only as a separate social group. Contact with them was taboo. Today, however, everyone is part of the larger social narrative.

Relating the euphoria of opioid use in open forums caused adolescents, who already feel indestructible, to rebel by trying them. These impressionable youth become attracted to opioids in the same way their parents were attracted to alcohol, tobacco and marijuana. This sent teens scrambling to find a free sample in grandmother’s medicine cabinet.

Many renowned physicians believe addictive personalities are actually formed by a genetic predisposition to addiction. All that is needed is some substance to abuse. Alcohol is usually the gateway drug for adolescents, the “first contact” for many teens. Forgotten opioids in a medicine cabinet only come later. Addicts will often say, “My drug use began with a prescription opioid.” But addiction experts know the battle was already lost if there was no intervention after “first contact” with drugs.

Society has long blamed overprescribing for the opioid epidemic, but the last three years have proven that to be a red herring. The mass closing of pill mills in 2015, the CDC opioid guideline in 2016, and the steep reduction in opioid production that followed in 2017 have only accelerated the epidemic. Forcing disabled intractable pain sufferers to suffer or self-medicate was not the solution.

The Centers for Disease Control and Prevention postulated that overprescribing caused the opioid epidemic because they only had clinical evidence for short term opioid therapy. Instead of opening a wider dialogue and seeking more evidence, the lack of critical long-term studies was used as an excuse to limit prescribing. Statistical manipulation of overdose deaths was used to confirm this errant policy.

This is emblematic of all investigations into our present drug problems. Society ran the fool’s errand that one blanket policy could be found for hundreds of diverse regional and local drug problems.

The opioid epidemic most likely emanated from widely accepted alcohol use and the social lure of opioids by adolescents. It has little to do with patients.

Douglas and Karen Hughes live in West Virginia. Doug is a disabled coal miner and retired environmental permit writer. Karen retired after 35 years as a high school science teacher.

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.

‘Benzo Crisis’ Keeps Not Happening

By Roger Chriss, PNN Columnist

A new study published in The Journal of Clinical Psychiatry has found that the misuse and abuse of benzodiazepine is relatively rare, even though the drug is sometimes hyped as the next overdose crisis in healthcare.

Benzodiazepines – often called “benzos” -- are a class of sedative that includes Valium and Xanax. The medications are usually prescribed to treat anxiety and insomnia.

Data on over 100,000 adults in the 2015-16 National Surveys on Drug Use and Health was analyzed by researchers, who found that benzodiazepines were used by 12.5% of American adults. Of those, about 17% “misused” the drug at least once, but only 2% had what was diagnosed as a benzodiazepine use disorder.

The study found several risk factors for benzo misuse, including younger age, male gender, lower levels of education, lack of health insurance or employment, and lower income levels — factors often associated with other substance use disorders.

The National Institute on Drug Abuse (NIDA) recently reported that most misusers obtained benzodiazepines from friends or relatives, with only about 20% receiving them from their doctor.

These findings, both the statistics and the specific risks factors and usage patterns, run counter to inflammatory media headlines such as “Xanax, Valium looking like America's next drug crisis” or “Benzodiazepines: our other prescription drug epidemic.”  

Instead, benzodiazepines are better viewed as part of an ongoing problem of drug abuse and addiction that primarily occurs outside of medical care. They are a factor in many drug overdoses, partly because of increasing rates of counterfeit Xanax and Valium being contaminated with illicit fentanyl, and because overdose rates increase when benzodiazepines are combined with opioids or alcohol.

Until recently, benzodiazepines were commonly co-prescribed with opioids to chronic pain patients, a practice that is now strongly discouraged by regulators and insurers.

There are indeed risks with benzodiazepines, including not only sedation and somnolence, but also cognitive effects and worsening of psychiatric symptoms. Moreover, chronic benzodiazepine use can lead to physiologic dependence independent of any abuse or addiction, and this dependence can make tapering off benzodiazepines difficult. Benzodiazepine withdrawal syndrome is sufficiently important to merit extensive treatment in the online guide known as the Ashton Manual.

But there are also benefits in using these drugs, even for long-term therapy. For instance, REM sleep behavior disorder is a sleep disorder in which people act out vivid, unpleasant dreams with violent arm and leg movements, often harming themselves or bed partners in the process. The benzodiazepine clonazepam (Klonopin) is the traditional choice for treatment for that. 

Stiff person syndrome is a rare neurological disorder involving intense muscle spasms in the limbs and trunk. The benzodiazepine diazepam (Valium) helps reduce those muscle spasms and stiffness.

There are also intriguing novel uses for benzodiazepines as well. Some researchers are investigating low-dose benzodiazepine therapy for people with treatment-resistant obsessive-compulsive disorder (OCD). This is not the cuddly version of OCD seen in TV shows like “Monk” but crippling dysfunction that renders a person incapable of leaving their bed for days at a stretch.

Benzodiazepines need careful consideration, but not a hyped crisis. In a reference to the opioid crisis, NIDA director Nora Volkow, MD, told Opioid Watch: “As always, science should be the driver of smart policies designed to reverse the course of this crisis.”

The same wisdom should be applied to all medications.

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.

A Pained Life: Torn Between Hope and Fear

By Carol Levy, PNN Columnist

Tonight, I feel like the character Pushmi-pullyu from Doctor Dolittle. You know, the animal that has a head at both ends; one head pulling to go to the right, the other head raring to go to the left.

I’m also feeling torn between hope and fear.

Although I have trigeminal neuralgia, which is not a headache, I am going to be admitted tomorrow to the headache inpatient unit at one of the city hospitals.

The treatment I will receive is a 24-hour a day IV lidocaine drip, for 4 to 5 days.

Many years ago, I had lidocaine infusions but they were for only 3 to 4 hours each time. I tried it a few times, a few weeks apart, but there was never any benefit. On the upside, there were also no side effects.

“doctor dolittle”

As I read the information online about getting lidocaine for a protracted period, I am getting nervous. Hallucinations? Uh oh. I don't think so. That scares me.

I already know about the potential heart risks. The doctor told me I will have to be tethered to a heart monitor the whole time as a precaution. A sudden drop or increase in blood pressure, unconsciousness and even seizures are possible.

I did not know about the potential for deep vein blood clots until I read the information the clinic sent me. I will have to wear anti-clot stockings the whole time.

There is a list of other “moderate” and “mild” side effects: a metallic taste, tinnitus (ringing in the ears), lightheadedness, agitation, drowsiness, problems focusing, slurred speech, and numbness of the mouth and tongue.

The more serious side effects worry me. Nothing happened when I tried lidocaine the other times, but maybe having it 24 hours a day for a few days in a row vs. 3 to 4 hours every few days makes a difference.

That’s where the Pushmi-pullyu comes from. I do not know if I want to do this.

This will be the first time in the last 13 hospitalizations where I will not be going in for brain surgery to treat my trigeminal neuralgia. I have to admit, there is probably an unconscious aspect of feeling as though I am allowing myself to do one more potentially really dangerous procedure, like another surgery, and I am putting that feeling of danger on the lidocaine.

On the other hand, the reason to go ahead is pure and simple. Bathing the nerves in anesthetic for 72 hours, maybe slightly longer, makes sense to me. The nerves will be numbed or at least calmed down. How can that not work?

My bags are packed. I'm ready to go.  So once again, hope wins out over fear.

Is that a good thing or bad? I won't know for a few days, but I wonder if instead of Pushmi-pullyu for those of us in pain, it should be Fearmi-hopeyu -- with the “hopeyu” being the stronger of the two.

(10/23/18 update: Carol reports the lidocaine infusion did relieve her pain for a while, but by the 3rd day, “I had some bad reactions that altered my reality perception, not what I would think of as hallucinatory but close cousin so we had to stop it.” Carol says she is very disappointed by the outcome, but it was “definitely worth the trying. And thank you to all who asked.”)

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.