Me and My Pain
The challenges of living with chronic pain
Abbey Strauss MSW MD
Smashwords Edition
Copyright © 2010 Abbey Strauss
All rights reserved
Smashwords Edition, License Notes:
This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each person. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you.
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Dedications and Acknowledgements
To all those many people, who through their pain and suffering, trusted me enough to enter their worlds, and in doing so, taught me about the reality of their lives.
And in particular, a special thanks to my wife, whose experience was the ultimate foundation of great insight and strength for all of us.
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Table of Contents:
Introduction – Is this book for you?
Chapter 1: A bit of history and an overview
Chapter 2: How the pain started
Chapter 3: A typical case
Chapter 4: Do doctors understand what life is like for the chronic pain patient?
Chapter 5: Well, you’ve got to learn to live with the pain
Chapter 6: Pain and personality changes
Chapter 7: Addiction, iatraddiction and pseudoaddiction
Chapter 8: Punishment for what the doctor can’t fix in patients with unfixable
emotional problems
Chapter 9: Lying
Chapter 10: Sleep
Chapter 11: Relationships
Chapter 12: Why medications work one day and not the next
Chapter 13: The victim becomes the perpetrator
Chapter 14: What is pain? A medical perspective
Chapter 15: I had a friend who got better
Chapter 16: Doctor shopping: it looks like an addict but it’s just looking for help
Chapter 17: Under treatment and mistreatment
Chapter 18: Suffering
Chapter 19: What the psychologists see
Chapter 20: That word ‘addiction’
Chapter 21: Pain in the dying versus pain in the living
Chapter 22: The extended pain patient
Chapter 23: Pain patients have to be perfect people
Chapter 24: Insurance companies
Chapter 25: Epilogue and recommendations
References
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Introduction: Is this book for you?
This book comes from people who personally suffered from some aspect of pain. The pain may have been within their own bodies, or it may have been the emotional suffering that comes from living with someone in pain.
I belong to both these groups. My wife, now a hospice nurse, endured a terrible period of pain that nearly took our lives away. Then I suffered incredible neck pain. Fortunately surgery took away most of our pains, yet the experiences of living with the pain, and of the incredible struggles to get pain relief, indelibly marked our lives.
This book has even another keystone: I am a physician. So I have three platforms from which to speak: as a physician who treated pain, as the husband of a former chronic pain patient, and as a former pain patient myself. This three line saying captures my resume on chronic pain:
I’ve seen the elephant,
and I’ve heard the owl,
and I’ve been to the other side of the mountain (1)
This is not a book on how to treat specific aliments. Indeed, the world of pain treatment is now a welcome and ever-so-rapidly improving part of our technical world. This is good.
This book, however, looks at how to live with the common problems of pain. It examines the issues of suffering when pain is managed, properly and improperly, by both patients and doctors.
The pain treatment world now has a good momentum. Real change is happening. Laws now allow physicians to treat chronic pain patients without as much fear of regulatory persecution. Many doctors know how to properly treat chronic pain. Quality of life issues are becoming more important than mere dosing issues. The terrible attitudes and the wounds that all these older problems once caused are less common.
The Hebrew word ‘tikkun’ best captures what is happening; ‘tikkun’ means to heal, repair and transform. ‘Tikkun’ is our purpose.
But the progress is far from enough. Occasional horror stories still appear about unscrupulous doctors who claim to be treating pain, but are in fact only maintaining addictions. These repugnant events literally hijack the good work of honest pain management practitioners. Insurance company and regulatory hurdles still exist, but bit by bit they are being overcome.
The stories and emotions captured in this book are real. They came from my experiences with countless pain patients and their families. This book, therefore, is a convention of ideas, explanations, and suggestions to help us all grasp the facts of pain and the world into which it puts its victims.
The suffering may be within you, but you may not be the cause of the suffering.
Some sections in the book are scientific and technical, some are expressions of what patients report, there are many stories about people in pain, and some are essays about the roles and history of suffering. The book ends with suggestions of what can be done to energize and support efforts to hopefully make things better.
Is this the book for you?
Yes, if you, or someone close or important to you, suffers from chronic pain and one or more of these applies.
Do you feel?
• That the medical community is misunderstanding you.
• That you are basically a psychologically normal person without any emotional, social, or monetary benefit from the pain.
• That you are waiting to be seen by a specialist or are being unsatisfactorily treated for your pain, or that you have been told by doctors and clinics that your pain is untreatable even after aggressive trials of the most current treatments have been made, and you feel hopeless and endlessly suffering.
• That you have been told that your primary problem is a psychiatric problem or an addiction, and the pain is not real or as bad as claimed.
• That you have to work too hard to get access to adequate pain relief.
• That you have given much thought and struggled to find some reason for, and make a place for, the pain in your life.
• That at times life is too hard to live because of the pain and what it has done to you and your family.
Say yes to any of these and this book should offer you some emotional and intellectual relief as well as assistance.
This book is about the daily reminder of what it is like to live with pain. It is about that uniquely personal relationship between “Me and My Pain.”
CHAPTER ONE: A bit of history and an overview.
This book writing project began 1996. Then it slept for over a decade because many things seemed to begin to change for the better. But too many problems in the management of pain still exist, so it was time to re-start the project. One major on-going problem is the under-treatment of suffering.
Impressive technical improvements have nourished important clinical and ‘way-of-thinking’ shifts. Now there is a deeper and wider-spread recognition that pain is often under-treated, and that treating with opiates is safer than once thought. Wonderfully rigorous scientific research is underway. The professional literature has even advanced to the degree that it speaks of such intriguing differences in such areas as how genetically based stress point patterns could affect how sensitive or resistant a person is to pain. (2) Pain is not always just in one’s head.
New non-opiate treatments now exist such as ziconotide (Prialt®), pregabalin (Lyrica®), milnacipran (Savella®) tapentadol (Nucynta®, which acts as an opioid and non-opioid), and duloxetine (Cymbalta®). Anticonvulsant use for pain control has become quite common. Surgeons and anesthesiologists also have better interventions, devices and corrective techniques. Transcranial magnetic stimulation (TMS) is approved for the treatment of depression; the technique uses electromagnetic pulses to alter brain activity, and while still experimental, work thus far shows it may be helpful with chronic headaches, shingles, fibromyalgia, and peripheral neuropathy.
Neuroimaging can now show blood flow changes in response to pain. We are beginning to use our distinctive genetic patterns to individualize and improve treatment success. This is known as pharmacogenetics. (4) A newly discovered protein, known as p11, may be pivotal in treating both depression and pain. (5) The roles in pain played by glial cells and neuronal growth factors, such as BDNF (brain derived neurotrophic factor) in the central nervous system are now being aggressively studied. More doctors now use the term “treat to effect”, which means treating until there is a good response. And very importantly, but certainly far from the bottom of the list of changes, are the fantastic, robust and vigorous patient fueled advocacy groups that force the world into more realistic attitudes towards pain. These are all very good developments.
Pain affects about 20% of the population. It burdens all life’s realms. As a result, the business aspect of pain treatment has become a popular, in-vogue business. Sadly, too much pain treatment comes out of questionable clinics that seem all too ready to treat people with questionable medical needs.
Another distributing trend is that physicians are moving too much of the pain experience into medical models and away from the psychological models. The call to treat the suffering aspect of pain is still too restrained. Many will disagree with me on this point, yet the mental health aspects of living in pain are too quickly given off to other professionals. In doing so, the primary physicians fail to realize that many of the mental health issues of being in pain are caused by, and therefore might be lessened, by the nature and style of a physician’s choice of pain treatment actions. For example, many patients frequently report that many pain management doctors self-infuse themselves with a hero quality. Many doctors rebut that they have to protect themselves from unsavory patients, and so somewhat of a police-like, authoritarian quality exists in many of their practices. A patient said that a “cop on patrol flavor” moved into many pain management offices. It is troubling that the world of ‘pain management’ expects to have unsavory patients knock on their doors. This lowers the bar down into a cynical and odd ecosystem. These are a serious topics that later will be extensively and bluntly discussed.
Another problem is that many patients feel doctors are too quick to make negative psychiatric judgments when problems exist with them. Even psychiatrists have been known to mislabel pain patients.
A 52 year old suffered a TMJ injury. Over many years, she had over a dozen surgical attempts to try to fix the problem. One psychiatric evaluator, hired by her insurance company, and who saw her only one time, said she suffered from Munchausen’s disorder (a psychiatric condition in which there is no bona fide medical illness). He clearly did not care to listen to the details of her story. In a score of years, I spent over 1000 hours with her. She hated her pain, and she always fought additional surgery as much as possible. The insurance doctor was very wrong.
Another insurance psychiatrist pejoratively claimed that her great concern with her facial appearance stemmed from vanity issues. The truth is that she was bothered for years as she watched her chin disappear. The same examining doctor discounted the effects of her exposure to a FDA recalled TMJ implant known to cause deformities, and that she was quite comfortable with her appearance before the injury and implant. So he labeled as vanity what she saw as frightening changes in the shape of her face. Though this doctor was wrong, his opinion worked its way into her file as if it was a basic psychological truth about her. This type of problem will be discussed in much detail later.
A nursing journal report in June 2008 said that one of the most common nursing frustrations was when physicians prescribed either too little or the wrong pain medication. (6)
Then this appeared in the New York Times in 2008: (7) “There is an undeniable fact about chronic pain: More often than not, pain is not treated or undertreated. A survey done last year by the American Pain Society found that only 55 percent of all patients with non-cancer related pain, and fewer than 40 percent of those with severe pain, said their pain was under control. But it does not have to be this way. There are myriad treatments – drugs, devices and alternative techniques – that can greatly ease chronic pain, if not eliminate it. Chronic pain is second only to respiratory infections as a reason that patients seek medical care. Yet because physicians often do not take a patient’s pain seriously or treat it inadequately, nearly half of chronic pain patients have changed doctors at least once, and more than a quarter have changed doctors at least three times.”
Other writers and patients equally lament about the pain treatment problems. (8) Patients often tell me what they feel about many of the pain management practices they’ve used. One patient re-named his new pain management doctor as “the-guy-who-is-trying-to-manage- my-whole-life-cause-he-doesn’t-trust-me-doctor.” I repeatedly learn that patients hesitate, or even fear, talking to their doctors about their real dosing needs, or that they underplay their needs so not to offend the doctor. They dread being absolutely honest about their medication needs for fear the doctor will drop them as a patient. One very astute patient observed that “the lab tests I have to take aren’t being used to make sure I have a good enough blood level of meds to control my pain. No, those lab tests are there to see if I am telling the truth about what I swallow. What an atmosphere!”
“I’ve come to realize that prepositions are all about tones. I wish I could talk ‘with’ my doctor. Instead we talk ‘to’ each other.”
Problems tend to emerge from what can be labeled as the behind the gas station or strip mall pain clinics. These dispensaries time after time pop up and are frightfully widespread. Just look at the ads in the newspapers usually available for free outside of take-out restaurants. One has to wonder if or how they service legitimate patients.
These questionable clinics seed our uncertainties that these are no more than walk-in medication mills, like easy take-out pharmacies for those with for less than genuine pain needs. Horror stories from these clinically indifferent pain clinics chill the entire profession and galvanize the regulators into panic. Some who claim to be hierophants (that is, someone who is supposed to help humanity; physicians are supposed to be hierophants) are actually just ethically detached cash businesses. Florida Statewide Prosecutor William Shepherd labeled these doctors as “signologists” – corrupt physicians who provide no treatment and merely sign-off on prescriptions. In 2007, “110 people in Florida died from heroin, while more than 2,100 died from prescription opioids.” (9) This same article reports other cases of doctors who never saw patients yet prescribed medications for them. A key quality is that within the signology clinics, the patient’s connection to the medication is usually stronger than is the relationship with the physician. They should be at least equal.
The husband of a pain patient said: “My opinion of some of those pain clinics – they plunder the weak and take advantage of their illnesses just like someone whose interest in their own profit is so rationalized that it removes any sense of moral responsibility. It is the criminal, and too often the corporate mindset, to sell a product, usurp their customer’s fragilities, and earn money regardlessly. There is none of the traditional, sacred quality that saw medicine as a non-brutal profession. Shame on them.”
But honesty requires that we see the another side to some of these clinics: Many of these clinics serve the uninsured, or those whose emotional needs are so intense that a ‘real’ clinic or average practice would not give out medications with the ease and ‘turning away of the other cheek’ as they get in these cash and carry clinics. And should one of these clinics take insurance, then the effect further reduces the burden on other community medical resources. Many of these pain clinics appear seedy because they appear to be servicing a ‘seedier’, more troubled group or just a poorer crowd. A troubled person in real physical pain is in as much pain as a non-troubled person in pain, though the later is more likely to have corollary support mechanisms, such as money, family, or better insurance. I’ve heard people say some that of these pain clinics are but a notch away from the methadone clinics in that they are in reality treating addictions. This is a good point. The methadone clinic is more upfront because their clients admit to problems with narcotics. Indeed, the methadone clinic may offer more of a respectful and therapeutic flavor than do the pain management clinics. The essential question is why one would choose a pain clinic versus a methadone clinic for an opioid supply? I suspect it is that the methadone clinic is more highly structured and demands a more rigorous level of patient responsibility than do the walk-in pain clinics. I would also suggest that the users of the pain clinics do not seek to control their addictions in the same manner as do those who go to the methadone clinics.
There is an agonizing and dreadful disappointment when doctors exploit the business opportunity granted to them by their medical licenses. In 2007, the US FBI specifically mentioned ‘pain management and associated drug diversion’ on their monitoring list for Medicare and Medicaid fraud. (10) These are the awful pain management stories that get into the media. The truth is that these are not real pain management stories; rather they lean towards criminal stories about criminals who use pain management tools to perform their crimes. The reaction to these tales makes for a backwash that too often lives in the idea that taking away the tools will prevent the crime. That, of course, is wrong. Preventing any crime is done by removing the motivations or needs for the crime. There are so many points of intervention. Start by getting rid of the bad doctors. Then force the drug seeking patients into good rehabilitation. The interventions list is long.
Another spillover is the pollution that these stories release into the community’s thinking. It is as if some understated, but real danger and impropriety exists when treating pain patients.
This is an enormously complex issue. In 2007 the New York Times Magazine further explored the problem. (11) Among the many poignant statements in the article are two compelling comments about the doctor-patient relationship. The first comment chills. The second comment warms.
1. “In addition to medical considerations, real or imagined, there is another deterrent to opioid use in the doctors’ mind: fear.”
2. “The basis of the physician-patient relationship is trust. Trust is especially valued by pain patients, who often have long experiences of being treated like criminals or hysterics.”
We will return many times to the doctor-patient relationship issues.
Other developments are enthusiastically welcomed. Attention is now being given to children with pain. (12, 13), to teachers who have to manage chronic pain students in their classrooms, (14), and to adequate pain control in the elderly. (15, 16). It’s sad because these areas should not have needed special attention. What logic lead to such long held thinking that children ought not to be given pain medications? Giving proper pain control to everyone ought not to have ever been an issue. Many of these valuable changes grew out of the hard work done by the pain advocacy groups.
The Mayo Clinic in Minnesota ran a pediatric pain rehabilitation program for adolescents with chronic pain. It was a three week hospital based program. They report that 15% to 20% of children and adolescents have chronic pain, with 5% of all children being so handicapped by the pain that they cannot function. “Life with a child who is experiencing chronic pain often spirals into serious family stress.” Many of the children needed less medication by the end of the program. The children are in the program 5 full days a week for 3 weeks. Their parents are in classes about 20 hours a week. (17)
By the same token, a tragic story from Seattle reported that a 15 year old autistic child died after the dentist gave him inappropriate pain medications following dental work. The case caught the attention of the Health section of the American Bar Association’s Journal. (18) The case speaks to the issue that too much pain management is done by those who do not understand the process of proper management. In the Seattle case, the hospital changed its policy such that now pain management specialists must approve such prescriptions.
The Veterans Administration, in a policy known as the 5th vital sign, now requires VA medical personnel to ask about pain. (19) Once again, it boggles the mind to think that medical personnel had to be mandated to ask about pain in their patients. State governments have also recognized that appropriate pain treatment is a patient’s right. In 2001, the California courts forced doctors to seriously examine how they treat pain patients. Indeed, in 1994, the Medical Board of California sent pain treatment guidelines to all physicians in the state, and in 1997, California passed the Pain Patient’s Bill of Rights. California also began to require pain management training as part of physicians’ on-going education. (20)
Much of this work was spearheaded by the quiet Sacramento based Harvey Rose, an internist who served as a mentor to me and others in pain management. His work was a central impetus for the California Intractable Pain Act. He died recently. (21) All in pain should know about, and offer their thanks, to Harvey.
In 1999, the Health Care Financing Administration (this was the Federal agency that ran Medicare. It is now known as CMS, or the Center for Medicare and Medicaid Services) ruled that patients must be informed of any rights they have under state law to make decisions concerning pain treatment. In essence the Federal government was taking an interest in how pain was treated. (22)
Finally, doctors were considered negligent if they failed to treat pain. (23, 24) In 2001, the Joint Commission on Accreditation of Healthcare Organizations (commonly known as JCAHO) adopted a set of pain assessment and treatment standards that required agencies to monitor their pain management operations. (25, 26) In 2008, Medicare ruled that hospice patients must “have greater rights to effective pain management.” (27)
In 1989, an article appeared on how pain management could be an alternative to euthanasia. (28) The article remarked that “the fear of addiction in terminally ill patients would be laughable if it had not caused so many patients to endure needless pain.” How true, how sad, and how embarrassing that it took almost 20 years before Medicare and other agencies changed their rules and attitudes about this.
“I kept asking my doctor if any of the agency heads or Congress people would stop being so afraid of pain management if one of their family was in as much pain as was my aunt before she died.”
Yet even with these wonderful moves, so many problems in pain management still exist. Look around. Why do the major media still need to write about inadequate pain treatment? Why did a 2007 article in Oncology Nursing (29) report that in 2002 “approximately 28% of Hispanic patients received analgesics that were insufficient in strength to manage their pain and that physicians under estimated pain severity in 64% of Hispanic patients.” Why in 2004 were 50% of Hispanic and African American patients still under treated for their pain?
The Hispanic group revealed four problematic themes: a lack of communication about under medication, that patients presented with the qualities of macho and adnegada (Spanish for being unselfish), that family is more important than cancer pain, and that their illness or their medications made them feel like prisoners.
Too many of the old problems and attitudes still breath and are still active.
Many patients continue to report that they need more medication than their doctor is comfortable prescribing. This is a tricky situation. The discrepancy may stem from the doctor’s own philosophy and policy towards pain relief and prescribing, or perhaps it reflects the doctor’s own discomfort with unusual situations, such as might exist in a particular case. Sometimes the problem is due to trepidation that the doctor may cause harm, or feed into, a psychiatric problem. Doctors often fear being cleverly duped by the patient.
A central diagnostic impediment in pain management is that pain is just as subjective to those who report it as it is to those who measure it.
“I know it seems odd to compare pain to love, but they are feelings, and each of us knows it differently within our souls and so each of us lives with it differently. You can’t quantify my measures of love. Even my actions may belie my level of love. The same goes for pain. I can love or be in pain and still function. My functioning reflects my other needs and my ability to deal with adversity. It has nothing to do with my pain or love. I just want to love more and be in pain less.”
Psychiatric patients who also suffer from chronic pain can be complicated. They may live under layers and layers of different operating variables. But by the same token, having a psychiatric problem does not automatically complicate their pain management needs. If the emotional and pain treatment needs do complicate each other, then the doctor may have to work out of the box if the patient’s clinical needs don’t fit inside the standard treatment box.
Many doctors are not comfortable in this clinical corner. Many non-psychiatric professionals talk of and speak to the psychosocial aspects of a patient’s life, but this is often just veilleity. (Velleity is a stated intent to do something, but the inclination to do that ‘something’ is in point of fact weak, rudimentary, or non-existent.)
“My doctor spoke of my life issues, but it was just talk. He never went past mentioning it, like that was somehow enough. I got the feeling he didn’t want to touch it.”
Later in this book we look at how a doctor’s own style and personal comfort with complex cases can impact someone’s pain.
I know a psychiatrist who admits he is afraid to prescribe medications outside of FDA accepted doses. He is not known for treating complex cases. I know another psychiatrist who has a boutique practice. She shows no shame announcing that she refers out all the really complicated cases. I had the fortune of treating one of her failures; the patient only needed higher doses of medication along with a higher dose of psychotherapy. This paradigm applies to complex pain patients as well. Clinical success is, time and again, often just a matter of giving the patient what they ‘truly’ need.
Too many pain patients have doctors who are unlikely to adjust a dose to match the patient’s real needs. This may come from opioidphobia, which is the aversion to the use of opioids. It is particularly evident if an unusually high opiate dose is needed. This phobia is often based more on a personal philosophy than science. Many patients do quite well with high doses: this too will be discussed later in the book.
Patients don’t know what a new doctor’s dosing philosophy is until after they’ve entered treatment. Should the doctor be the only one on their insurance list, then the patient might be stuck in a bad situation.
It’s hard to imagine that debates even occurred with regard to the safety and appropriateness of treating cancer pain. (30) This has changed. For a long time, many people believed that it was even inappropriate to give high doses of narcotics to the dying. Doctors who treated the dying were thought to be inappropriately practicing medicine, and for a while, it rose up to the level that some form of criminal activity might be placed against a doctor who aggressively treated the dying with narcotics. This is from Ann Alpers in 1998: “How is the growing awareness of dying patient’s pain and the willingness of prosecutors to charge physicians with crimes connected? Pain at the end of life is frequently treated with narcotics, prescription drugs that are closely regulated by state and federal law. That complex web of laws and a growing fear of legal sanctions deterred physicians from prescribing controlled substances.” She addressed the “actions brought against physicians for care, particularly pain control, at the end of life.” (31)
Fortunately the debate on how to treat end of life pain is finally much less of an issue. Now the passionate focus has moved to how to treat the pain coming from non-terminal conditions. The hospice movement is credited for many of the improved pain control strategies for people who suffer pain while dying; we need a similar movement to focus on the pain for the non-dying patients. One impressive project involved with the hospice and palliative care movement is known as EPEC: Education in Palliative and End of Life Care. (32)
“My wife had tumors all over her body. I found a doc who treated her quite well as an outpatient, but when the infection hit, and she needed hospitalization, the hospital doctor cut her pain meds way back. I went crazy! I fired so many doctors over that, and in the hall I told one of them that I’d be just fine if we detox her in the grave, but until then, give her the meds. He didn’t, and she died real fast. I think she died from the pain as much as the disease. She gave up. We never had a chance to get to hospice.”
A collective wish lives within pain managers to move away from narcotics. Though opioids control pain, they do not fix the cause. And while safer – in the right context – than many other interventions, opioids are not without side effects. The World Health Organization has a step-wise protocol of pain medication use that begins with the non-narcotics. But sometimes narcotics are simply needed. Using them is not a sign of failure, indulgence, or incompetence.
A lot of good science is being devoted to finding new pain controlling interventions, but we cannot forget that while the research is underway, patients sit in pain. Not controlling the pain means a life is being wasted.
Proper pain management was once a mission. Now it is a lucrative business. In the past there were generally two broad classes of pain management doctors: those who really cared and fought to convert a bad situation into a good one, and those who saw an economic window through which to sell pain medications, with an eye more on their own profit than on real clinical improvement. The horror stories that came out of this second, for-the-profit group, raucously smacked the problems of seedy pain management right into the center of the public media arenas. When responsible media looked at the first group of doctors, the really-caring-ones, they saw how this small group of missionaries was indeed seeking to mend the ailing. But despite the articles and comments on proper pain management, the second group of doctors sold more newspapers.
Many pain patients do get adequate treatment. But too many don’t. The public literature, such as the two New York Times pieces already referred to above, attest to the incredible levels of inadequate pain treatment. An internet search of the responsible media sources will further support this. This problem lies as much within the doctors as it does within the patients.
Furthermore, consider that only as recently as in September 2008 did the U.S. House of Representatives pass the “National Pain Care Policy Act of 2008” (HR 2994). The disquieting twist is that in the year 2008 there still needed to be a bill to improve pain care. Such a bill should not have even been necessary. Why do we, as medical professionals and a society, need an act of Congress to improve pain management?
Here are few words from the bill: “Despite the fact that pain affects more than 76 million Americans – more than diabetes, heart disease and cancer combined – it remains woefully under treated and misunderstood. All too common are stories of patients in the grip of pain, who are left to consult multiple care providers before their pain is properly diagnosed and managed, if it ever is. Not only is unmanaged pain emotionally and physically debilitating for patients, it also places a heavy burden on family and caregivers.”
Managing that burden required the creation of new programs by the FDA and the Centers for Disease Control and Prevention. One program addressed the surge in accidental opioid (and other) overdoses. (33) By January 2009, the FDA reported that unintentional poisoning was the second leading cause of unintentional death, with 23,618 such incidents in 2005. Approximately 95% were due to drug overdoses, and half of those were associated with prescriptions. The new focus became on how doctors could safely prescribe controlled substances for proper pain management. One goal was to develop more objective and reliable methods to assess pain. We agree with that goal. An American Medical News article on this same topic supported the FDA-CDC program. (34)
It’s terribly sad that a medical condition needed a process similar to the civil rights movement to force our community to transform its attitude towards those who suffer from the condition known as pain. Part of the problem was that the medical community did not know how to reliably categorize, interact with, and treat these patients. It was, unfortunately, also a medical arena much too open to abuse and exploitation.
This is a person in pain book that looks at these issues, and in doing so, hopefully it will invigorate, explain, soothe, exonerate, and empower anyone who suffers from pain.
CHAPTER TWO: How the pain started
Several years ago my wife needed surgery.
The type of surgery is not as important as is the fact that it failed. She was left with unbelievable and constant pain that brought all our lives to a complete stand still. What had been an active and vivacious woman become someone unable to live a life of her own choices. Following the surgery she had to always listen to the pain.
The pain controlled her. It kept her from sleeping. She needed large quantities of pain medications to reduce the pain just so she could eat. Her weight dropped. She became prone to infections. She stopped menstruating. And we began to fight.
The children watched their mother slip backwards. Friends and family did not understand such turmoil. People accused her of being an addict and of being irresponsible. She fell into a deep depression and required psychiatric care.
Some people never doubted her pain, but we felt they doubted its intensity. Why, she and I would ask, would good friends be so doubting?
Life was a tortuous merry-go-round. She had the pain in and of itself; she had the fear that she might never get better; and she felt the awful emotional anguish that came when some people began to doubt her.