Dr. House’s writers betray pain patients

As a chronic pain patient who took methadone for years, and experienced a lot of misunderstanding from medical professionals and laypersons about addiction, I greeted the House series with hope when I first saw it. It’s smart and interesting as tv goes, and Hugh Laurie is a fine actor who has done well with the unusual role. But beyond that, I thought having a chronic pain sufferer as a main character presented a great opportunity to break the stereotype that “taking pain meds longterm = addiction”. Dr. Gregory House is certainly well-informed about medical science as opposed to drug war hysteria, and no one can deny that he’s assertive!

Dr-gregory-house.jpg

Source unknown, appears only on generic odd picture sites. Found with Google image search.
House’s halo may fade as you read on.

However, the writers and producers are promoting the familiar hackneyed clichés about addiction–––worse, these clichés are false and are no longer accepted in current medical thought. And House, of all people, is represented as knowing no better, and accepting the label of “addict”.

Two of the doctors House works with (his boss Cuddy and his friend Wilson) say frequently that House’s professional and personal abilities are being damaged by his “addiction” (his everyday use of vicodin for constant severe pain in his leg), and this conflict has played out in many episodes in the first three years. [We never seem to watch the Fox channel, so we see House in reruns on other channels; if there has been a drastic change in the last season I wouldn’t know about it. But I doubt there’s been a change in a theme which has been used so often.]

I was moved to write this by seeing again the old episode titled “Detox” (episode 11, season 1, 2005). Cuddy challenges him to go a week without vicodin to “prove he’s not an addict”. House accepts the challenge, his prize being a month of no clinic duty, and he also accepts the premises: that if he shows signs of physical withdrawal it means he is addicted. He does show these signs, though he tries to hide or deny them, and he also suffers greatly increased pain. Feeling nauseated, he’s told that it’s withdrawal, and replies “No, I’m in pain. Pain causes nausea.” Maybe so, but withdrawal from opioids does too. Finally the pain and withdrawal symptoms make it impossible for him to function as his usual professional self: hyper-smart and intuitive diagnostician. A patient is depending on him, and so are his diagnosticians-in-training, and one of the latter gives him some vicodin and tells him to take it because he’s not able to do what needs to be done.

At the end, asked what he has learned, House says (close paraphrase): I’m an addict….But I’m not going to quit…I pay my bills, I work, I function.

His friend Wilson says, You’ve changed, you’re miserable and you’re afraid to face yourself…Everything’s the leg, nothing’s the pills?

House: They let me do my job, and they take away my pain.

So, House won’t abandon the vicodin because he cannot function without pain relief, but he caves to the notion that he is an addict.

There are so many things wrong with this, and the writers of a medical show ought to know better.

Addiction Versus Dependence

The refusal to distinguish between these two terms has cursed our management of pain for fifty years or more. But in the last couple of decades medicine has, at last, officially separated the two. Here is a discussion of the terminology from an authoritative source, a Consensus Document issued jointly by The American Academy of Pain Medicine, The American Pain Society and the American Society of Addiction Medicine, called Definitions Related to the
Use of Opioids for the Treatment of Pain
. [I quote at length, so it will be clear that this represents exactly and completely the sense of this document. Emphasis is added.]

BACKGROUND

Clear terminology is necessary for effective communication regarding medical issues. Scientists, clinicians, regulators and the lay public use disparate definitions of terms related to addiction. These disparities contribute to a misunderstanding of the nature of addiction and the risk of addiction, especially in situations in which opioids are used, or are being considered for use, to manage pain. Confusion regarding the treatment of pain results in unnecessary suffering, economic burdens to society, and inappropriate adverse actions against patients and professionals.

Many medications, including opioids, play important roles in the treatment of pain. Opioids, however, often have their utilization limited by concerns regarding misuse, addiction and possible diversion for non-medical uses.

Many medications used in medical practice produce dependence, and some may lead to addiction in vulnerable individuals. The latter medications appear to stimulate brain reward mechanisms; these include opioids, sedatives, stimulants, anxiolytics, some muscle relaxants, and cannabinoids.

Physical dependence, tolerance and addiction are discrete and different phenomena that are often confused. Since their clinical implications and management differ markedly, it is important that uniform definitions, based on current scientific and clinical understanding, be established in order to promote better care of patients with pain and other conditions where the use of dependence-producing drugs is appropriate, and to encourage appropriate regulatory policies and enforcement strategies.

RECOMMENDATIONS

The American Society of Addiction Medicine (ASAM), the American Academy of Pain Medicine (AAPM), and the American Pain Society (APS) recognize the following definitions and recommend their use:

ADDICTION

Addiction is a primary, chronic, neurobiologicneurobiological disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and craving.

PHYSICAL DEPENDENCE

Physical dependence is a state of adaptation that often includes tolerance and is manifested by a drug class specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist…

TOLERANCE

Tolerance is a state of adaptation in which exposure to a drug induces changes that result in a diminution of one or more of the drug’s effects over time.


DISCUSSION

Most specialists in pain medicine and addiction medicine agree that patients treated with prolonged opioid therapy usually do develop physical dependence and sometimes develop tolerance, but do not usually develop addictive disorders. However, the actual risk is not known and probably varies with genetic predisposition, among other factors. Addiction, unlike tolerance and physical dependence, is not a predictable drug effect, but represents an idiosyncratic adverse reaction in biologically and psychosocially vulnerable individuals. Most exposures to drugs that can stimulate the brain’s reward center do not produce addiction. Addiction is a primary chronic disease and exposure to drugs is only one of the etiologic factors in its development.

Addiction in the course of opioid therapy of pain can best be assessed after the pain has been brought under adequate control, though this is not always possible. Addiction is recognized by the observation of one or more of its characteristic features: impaired control, craving and compulsive use, and continued use despite negative physical, mental and/or social consequences. An individual’s behaviors that may suggest addiction sometimes are simply a reflection of unrelieved pain or other problems unrelated to addiction. Therefore, good clinical judgment must be used in determining whether the pattern of behaviors signals the presence of addiction or reflects a different issue.

Behaviors suggestive of addiction may include: inability to take medications according to an agreed upon schedule, taking multiple doses together, frequent reports of lost or stolen prescriptions, doctor shopping, isolation from family and friends and/or use of non-prescribed psychoactive drugs in addition to prescribed medications. Other behaviors which may raise concern are the use of analgesic medications for other than analgesic effects, such as sedation, an increase in energy, a decrease in anxiety, or intoxication; non-compliance with recommended non-opioid treatments or evaluations; insistence on rapid-onset formulations/routes of administration; or reports of no relief whatsoever by any non-opioid treatments.

Adverse consequences of addictive use of medications may include persistent sedation or intoxication due to overuse; increasing functional impairment and other medical complications; psychological manifestations such as irritability, apathy, anxiety or depression; or adverse legal, economic or social consequences. Common and expected side effects of the medications, such as constipation or sedation due to use of prescribed doses, are not viewed as adverse consequences in this context. It should be emphasized that no single event is diagnostic of addictive disorder. Rather, the diagnosis is made in response to a pattern of behavior that usually becomes obvious over time.

Pseudoaddiction is a term which has been used to describe patient behaviors that may occur when pain is undertreated. Patients with unrelieved pain may become focused on obtaining medications, may “clock watch,” and may otherwise seem inappropriately “drug seeking.” Even such behaviors as illicit drug use and deception can occur in the patient’s efforts to obtain relief. Pseudoaddiction can be distinguished from true addiction in that the behaviors resolve when pain is effectively treated.

Physical dependence on and tolerance to prescribed drugs do not constitute sufficient evidence of psychoactive substance use disorder or addiction. They are normal responses that often occur with the persistent use of certain medications. Physical dependence may develop with chronic use of many classes of medications. These include beta blockers, alpha-2 adrenergic agents, corticosteroids, antidepressants and other medications that are not associated with addictive disorders.

How important are definitions?

Few things are more important. We interact with the world through language. Words cause emotional reactions, compose our thoughts, represent us to others. Would you want to be introduced to a group of strangers as an “addict” or as a “pain patient”?

Let’s look at the decision to replace “addiction” with “dependence” in the fourth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV). This thick volume is the official dictionary and guide for defining mental disorders, including addictive behaviors. (Change in the DSM can contribute to profound social and legal change––as when, after a series of redefinitions, homosexuality was finally removed from the list of disorders in 1987.) An editorial in the American Journal of Psychiatry (2006) discusses this decision to use “dependence” not only to describe physical dependence, but also for addiction, as differentiated in the document quoted above.

All of the authors of this editorial are involved in the next revision of the DSM (DSM-V), and one has been part of the revisions since the 1980’s. They favor changing back to a distinction between “addiction” and “dependence,” and describe how the decision was made to merge both into “dependence”:

Those who favored the term “dependence” felt that this was a more neutral term that could easily apply to all drugs, including alcohol and nicotine. The committee members argued that the word “addiction” was a pejorative term that would add to the stigmatization of people with substance use disorders. A vote was taken at one of the last meetings of the committee, and the word “dependence” won over “addiction” by a single vote.

It was a victory for Political Correctness!

The authors criticize the widening of the term because of the negative effect on pain patients:

This [redefinition] has resulted in confusion among clinicians regarding the difference between “dependence” in a DSM sense, which is really “addiction,” and “dependence” as a normal physiological adaptation to repeated dosing of a medication. The result is that clinicians who see evidence of tolerance and withdrawal symptoms assume that this means addiction, and patients requiring additional pain medication are made to suffer. Similarly, pain patients in need of opiate medications may forgo proper treatment because of the fear of dependence, which is self-limiting by equating it with addiction.

A Canadian article (2006) describes the reluctance of many physicians to prescribe opioids for pain, and why they are reluctant:

In a recent national survey, 35% of Canadian family physicians reported that they would never prescribe opioids for moderate-to-severe chronic pain, and 37% identified addiction as a major barrier to prescribing opioids. This attitude leads to undertreatment and unnecessary suffering.

This is over one-third of Canada’s doctors who will never “prescribe opioids for moderate-to-severe chronic pain” no matter what. We cannot know how many would do the ethical thing and refer such patients to someone more experienced in treating pain, and how many just leave the patients to their own devices. If 35% would never prescribe opioids, some additional percentage would fall into the “rarely” category, which also results in undertreatment of pain.

Why does medical opinion on a fictional TV show matter?

Current medical “best practices” and principles regarding the differentiation of addiction from dependence have been slow to reach doctors and other medical professionals, let alone the public. Of course doctors should not be getting their medical information and attitudes from television, but television has a strong influence on viewers who know little about the topic presented–that’s all of us who are not medically trained. A person who believes that taking opioids results in addiction is far less likely to push for adequate pain treatment for him/herself, or family, and may even reject it if offered. If friends, relatives, and employers of pain patients share the confusion about addiction, they will exercise social pressure or threaten loss of employment. So the attitudes promoted by a popular TV show––in the US, House was the most-watched scripted program on TV during the 2007–08 television season––can have profound effects on the health care people receive.

When House stops taking the vicodin, he suffers headaches, sleeplessness, nausea, inability to concentrate, and irritability. All are symptoms of physical dependence, as in the definition paper cited above. That these same symptoms are felt by addicts is beside the point: addicts and chronic pain patients both are physically dependent, and both will suffer similar withdrawal symptoms as a result. For the pain sufferer, the symptoms of increased pain are added.

As a pain patient, I have experienced withdrawal from methadone. It is hell. It gave me much more compassion for addicts. Yet, in trying to get off methadone “cold turkey” when my doctors claimed they could not assist me, I went through seven days and nights of absolutely no sleep, intense physical and mental suffering from the withdrawal, and increased pain. There’s the pain you were medicating, and in addition the cessation of methadone makes all your bones ache, worse than any flu. And all this time the methadone was on the shelf. Untouched. Not typical addict behavior. On the eighth day with no sleep I realized that there had been no lessening of my symptoms, and that I could not endure it another 24 hours, so with distaste and reluctance I began taking the methadone again. I resolved then that I needed to find different doctors, who would help me through this, and subsequently did so with complete success. (I wrote about this in an earlier post.)

In my case the pain being treated had changed (improved, by a nerve block) during my time on opioids; the increased pain I had during withdrawal was nothing like that which House suffered from his leg. He showed great fortitude and self-control, but while dramatic it was medically pointless. The man has pain so bad he cannot function if it is not controlled; if nothing else works other than opioids, then that’s what he needs to use. Current medical thought recognizes this; the writers of the show do not.

Some of the behaviors relative to pain medication shown by House are reprehensible, such as stealing medication and forging prescriptions. This seems like classic drug addict behavior. But see the paragraph above on Pseudoaddiction, including the statement “Even such behaviors as illicit drug use and deception can occur in the patient’s efforts to obtain relief. Pseudoaddiction can be distinguished from true addiction in that the behaviors resolve when pain is effectively treated.” In fact, much of House’s often-criticized behavior has to be considered in light of the fact that even the vicodin never adequately relieves his leg pain. Irritability, mental and physical restlessness, combativeness, and harsh remarks can be the signs of unrelieved physical pain.

pain behavior chart.jpg

Chart from “Pain Assessment in Older Adults” (2006). The source references mentioned at the bottom of the chart are : 8. The management of persistent pain in older persons. American Geriatric Society (AGS) panel on persistent pain in older persons. J Am Geriatr Soc. 2002;50:S205-S224; and 9. Ferrell BA, Chodosh J. Pain management. In: Hazzard WR, Blass JP, Halter JB, et al. Principles of Geriatric Medicine and Gerontology. 5th ed. New York: McGraw-Hill Inc; 2003:303-321.

We have been told that even before his leg injury, House wasn’t a sunny sociable person. But he’s gotten worse since then, and in the show the doctors around House nearly always blame his pills––his addiction–not his pain.

Addicts and pain patients, differences and similarities

I intended to include some data here about the low actual rate of addiction (not dependency) in pain patients as a result of taking pain meds. I remember reading figures that ranged from 5% to 10%. When I did a quick search for substantiation I found that many of the research articles online are only available for a fee. The rates I did see varied so much, I must assume that the studies are not all using the same standards. Different researchers have different definitions of addiction vs. dependence; there is also an overlap of characteristics or symptoms between addicts and those who are physically dependent. If I had had no legal access to relief when I was in extremis after seven days of no methadone, I probably would have lied or stolen, if necessary to end the withdrawal. Nothing violent; I would have gotten myself somehow to the emergency room instead. But if turned away there, who knows?

This is the sort of mental and physical suffering that confronts the organism with a stark choice: solve this, or die. (If you are too debilitated to protect yourself or find food, you will die, as far as the primitive part of our brain is concerned.) Once physical dependency has been established, both addicts and pain patients are motivated to get their drugs, driven more powerfully than anyone can imagine who has not experienced it. The distinctions between addict and dependent patient must be made on criteria other than the evidence of physical dependence, since this is the same for both.

The chart below presents some criteria that seem to square with my experience and reading, although the source does not give scholarly or research citations for it.

Chart,addict-patient.jpg

[The last item under Addicts should read “The life of an addict is a continuous downward spiral.”]

Individual responses to potentially addictive drugs vary. Not everyone who tries heroin becomes addicted. Different responses are based on biological and psychological factors we are only beginning to glimpse: everything’s neurological in the end, I suppose, but increasingly it appears that experience (from conditions in utero to nutrition, upbringing, and exercise) can cause physical changes in the brain and nervous system, and therefore in thinking, emotion, and behavior [see note 1]. Even the physical brain, where our sense of “I” resides, is changeable throughout our lives: adapting, adding complexity, growing (or shrinking) based on what happens to us. The activity of our genes themselves can be enhanced, reduced, suppressed entirely, depending on outside conditions from before birth to the day we die.

How should society regard people with chronic pain?

When a starving person steals bread, we do not say that he should have simply endured his hunger, or that he is “addicted” to food. Believe me, the situation of a person in great pain, or even moderate chronic pain, is also desperate and unbearable, and the organism will get relief.

The compassionate and socially responsible action is to meet these needs in an appropriate way. Can we assist this starving person in earning money so as to feed himself or herself? If not, most of us agree that the helpless, the elderly, the people so injured by life as to be unemployable, should receive aid rather than be allowed to starve or freeze to death. The pain patient deserves the same action: the question to be asked is: How can the pain best be alleviated? There may be surgical options, transfer to a different job, physical therapy, use of TENS units and the like, as appropriate. Meditation, mild exercise, and cognitive training may offer some relief too. But the response to pain must not be limited to only non-drug approaches.

The patient is the final judge of what works, and how much pain is too much, and the patient should not be silenced with threats and accusations of addiction.

A question that needs to be asked about drug addiction is Why? Why do so many of our fellow citizens seek out heroin, cocaine, methamphetamine, illegal prescription drugs, too much alcohol? What is their pain? Not physical, perhaps, but certainly psychological or spiritual: despair, lack of meaning in life, lack of true positive connexion to other human beings and to the natural world. Until we approach drug addiction in this way we will never understand how to reduce its occurrence. Neither after-the-fact tactics (punishment, ostracism, rehab), nor prevention (education and interdiction) have worked very well. But asking Why? about addiction would reveal aspects of our society that are senseless and cruel to many, but pleasant and profitable for a few. Danger, ssssshh!

We have been so cowed and brainwashed by the continually failing War on Drugs and our native streak of puritanism that we even permit medical professionals to deny adequate pain relief to terminal cancer patients. Is it really because they “might get addicted” in the weeks before they die? Or is it the imposition of society’s fears and prejudices upon the most helpless among us? Clearly, we have made little progress in reducing the numbers of illegal drug users over the past forty years––but law-abiding people who go to doctors, they can be denied and controlled.

And so, apparently, can Dr. Gregory House, who is pitched to us as the independent thinker extraordinaire, smart and brave, ready to track truth to its lair and drag it out into the daylight. I wish his writers would let him do exactly that on the issue of pain and addiction.

1. Further reading on the “plasticity” of the brain (an unsystematic quick gathering)

  • Scientists map maturation of the human brain (2003), a short overview
  • Brain changes significantly after age 18 (2006), “The brain of an 18-year-old college freshman is still far from resembling the brain of someone in their mid-twenties. When do we reach adulthood? It might be much later than we traditionally think.”
  • Research finding persistent physical and functional changes in human brains caused by smoking, chemotherapy,
  • Empirical research on structural brain changes affecting social cognitive development after childhood (2007);
  • Various environmental factors can cause “epigenetic changes…reversible heritable changes in the functioning of a gene can occur without any alterations to the DNA sequence. These changes may be induced spontaneously, in response to environmental factors…” and be associated with development of schizophrenia and other psychiatric disorders or the quality of an individual’s performance as a parent
  • Childhood lead exposure can predict criminality(2008), even after controlling for factors such as socioeconomic status of the family; “Lead can interfere with the brain by impairing synapse formation and disrupting neurotransmitters, such as dopamine and serotonin. It also appears to permanently alter brain structure.”





Methadone and chronic pain: a personal account

NOTE: Four years after this post first appeared, it is still drawing comments from people searching for answers about chronic pain relief. I’ve learned a good deal from some of these comments, and in particular I want to remind readers that my experience with methadone is not typical in one respect: by the time I switched from other opioids to methadone, my most severe pain had been dealt with. My pain from fibromyalgia is chronic but not really bad if I manage my activities. A reader posting as Fireside Academy reminded me that we have to evaluate methadone (and other pain meds)  “relative to the pain experience without it”: if my pain had stayed at the severe level it was at when I started with opioids, then methadone might have been a positive thing for me. 

Almost all medication for chronic conditions is two-edged, so that we have to choose—are the benefits worth the negatives. All opioids present problems, yet other alternatives may be nonexistent. Go in with your eyes open, remember you need to retain control over the medication rather than letting it control you, and be sure you can rely on your pain prescriber to help you through the hard parts. I recommend scrolling down to Fireside Academy’s post (Feb. 19, 2012) to hear from someone for whom methadone is being beneficial.

I’m going to write the article I wish I’d been able to find when I was taking methadone for chronic pain. The degree of detail will probably make it of little interest except to those using methadone or considering it. (This is not a discussion of pain that results from a terminal disease, or from a disease that is temporary but severe, like pancreatitis. In such cases, opioids may be the best or only choice, and you are entitled to relief.)

I began taking morphine, and then methadone, for pain in 1997 because of crippling muscle-spasm-like pain, every day, from a long-untreated back injury. The injury had occurred in 1981; the orthopedists couldn’t see anything on x-rays, intimated that I was a malingerer, and wrote me off. Constant pain and disturbed sleep probably triggered the fibromyalgia that began to develop after a few years; by 1996 I was unable to work even part-time because of the deep fatigue of the fibromyalgia, its all-over body pain, and the back pain. At that point something had to change.

After finding no medical help in my area I found a pain doctor in another state and went to see him. He could see disc damage on an x-ray, and showed it to me. This is not particularly definitive: pain often exists without visible disk or vertebral damage, and visible damage often occurs in people who report no pain. But this doctor could see my pain in my face and how I moved, and that seemed to be the clincher for him regardless of how the x-ray turned out.

He put me on morphine and made an appointment for me to come back for a lumbar nerve block. This would only last 3-6 months but during that time the muscles that had been clenched with pain for 16 years could gradually unclench and be exercised. The nerve block worked exactly as planned, and I exercised consistently and was able to be more active. As far as back pain goes, I haven’t had a day since which was as bad as any hour in the previous years.

But the fibromyalgia pain remained. It’s felt all through the body: the pain threshold is reduced so much that light pressure feels like pain, a pat can be like a slap, and it hurts to lie in bed, sit, walk, lean against a wall. Extra pain is felt for days or weeks in muscles that get used even a little. As a result I wanted to stay on the morphine pills, thinking that it probably helped.

I couldn’t afford to keep traveling to see the out-of-state doctor so I looked around for a local pain doc and this time I found one. He switched me to methadone when the morphine became less effective. The methadone’s effect, too, became less over time.

Lesson #1: opioid effectiveness lessens as the body becomes accustomed to it. Opioids are not, therefore, a very good approach to chronic pain.

I think this second doctor was hoping I’d want another lumbar nerve block, a more profitable therapy than simply seeing somebody every couple of months for a prescription renewal. As it became clear that continuing exercise was keeping my back pain under control, he stopped inquiring after it, and began to treat me rather brusquely. I was still under the impression that the methadone might be lessening the fibromyalgia pain so I wanted to continue it, but I was feeling more pain, not less. The doctor raised the dose somewhat; he (rightly) resisted my efforts to raise it more, but never discussed any other pain relief measures with me. Gradually I became aware that while I was physically dependent upon the methadone, enduring the side effects and the 6 doctor visits a year, I was receiving diminished benefits or maybe no benefit at all.

Addiction and chronic pain

Here a word about “addiction’’ and “physical dependence”. During the time I took methadone, I have seen a total change in how the medical establishment thinks about addiction and pain patients (though not all members of it have made this change). In a nutshell, addiction is now the term for someone who is both psychologically and physically dependent on a drug. Pain patients rarely fit this definition: they rarely get any “high” from morphine, methadone, codeine, oxycodone, etc. and they don’t start taking it because of a psychological need to feel “different”. However, the physical dependence will cause the same withdrawal symptoms for the pain patient as for the addict, and constitutes a severe barrier to anyone trying (as I did) to get off of methadone without the support of a knowledgeable doctor.

Doctor or pusher, patient or customer?

Why was I trying this without help from my pain doctor? Because he refused to help, denied that there were any pharmaceutical aids for getting through withdrawal, and ignored my reports of having gone through painful withdrawal five times and failed every time.

One of the realities about being dependent upon a pain medication is that you are then dependent upon your doctor. Don’t like him? Not sure you are getting the best treatment? Better not change or you may be viewed as a “doctor shopper” and drug seeker. Of course you’re seeking drugs––that is what the medical establishment has offered you––but the hysteria from the war on drugs, another one of those “long wars,” has infected the practice of medicine with fear and prejudice. Why fear? The DEA, or state licensing boards, occasionally pounce upon pain doctors for prescribing opioids to too many people, or in cases of accidental overdoses. Doctors can lose their licenses, be pilloried in the media, even be charged with responsibility for someone’s death.

So the situation can easily become much like that of a drug dealer and his customers: the doctor/dealer (skeptical of your professed pain) has contempt for you, or is on guard watching for signs of scamming but is obliged to treat you and perhaps wants your money, while you come to loathe him but tailor your every word and expression to avoid getting cut off. I hope that most doctors do not fit this description. But the patients, who are locked into a relationship with wildly disparate power on the doctor’s side, must inevitably come to an uneasy awareness that their wellbeing depends on a “controlled substance” which is entirely controlled by the doctor, and which carries a public stigma of association with being a junkie, a weakling, a fraud, or all three. This is not like knowing you depend on your physician for your insulin prescription or your heart medication. A diabetic or heart patient is never suspected of getting medication for personal pleasure, or in order to sell it to schoolchildren.

When I first visited the callous pain doctor, who “treated” me for ten years, I was required to sign a form. He described it as a contract but all the obligations were on my side. I had to agree that I was aware of undesirable effects from opioids including dependency, and that if I lost a prescription or a month’s worth of pills I would not expect the doctor to write a replacement prescription. The importance of this latter provision is not one that can be understood by the patient until later. Once you’ve become dependent upon opioids, and experienced even mild withdrawal because you’ve forgotten a pill or been a few hours late, you realize in a different way what it would mean to lose a prescription and be without the drug for a month. Each month’s prescription form had to be picked up by me personally rather than faxed to the pharmacy or renewed by telephone (state law I believe, although the out-of-state doctor’s prescriptions had been mailed or faxed to my home-town pharmacy), meaning that I made about 120 trips of an hour or more each way, not counting stopping and waiting at the pharmacy on the way home. That’s 120 opportunities to have my wallet stolen, or lose it, or to get in a wreck in which the all-important piece of paper might be destroyed. In such a case, maybe my oh-so-compassionate doctor would have believed me and replaced the prescription that was in my stolen wallet, but the withdrawal is so severe that you feel such a risk is unacceptable. And you cannot avoid this consciousness of risk, it’s inherent in the dependency, and so there is constant anxiety, insecurity.

All medical conditions with unknown mechanism of action (such as fibromyalgia), or with no objective tests to demonstrate their reality and severity, are considered suspect both by the public and by some of the medical community. Psychiatric conditions such as schizophrenia and Post Traumatic Stress Disorder have for decades been discounted or blamed on some form of willful failure to suck it up and get on with your life. Any pain not associated with a known visible verifiable medical condition is also likely to be dismissed. Those medical practitioners who dismiss your pain also dismiss you. The more you seek help from them for this sort of pain, the less credible you are, the less seriously you are taken, until finally you may be seen as merely a stereotype: hysterical woman, somatizing patient with imaginary self-serving pain, seeker of drugs and disability.

For these reasons and others (such as fearing he’d simply cut me off, or reduce my dose and ignore any increase in pain), I never pressed my pain doctor about helping me to quit methadone until the last year or so. For his part, he demonstrated to me via a custom-mixed liquid containing dissolved methadone, of a strength unknown to me, that…what exactly did he demonstrate? After a month I came back and said my pain was worse; he said, “But the dose in the liquid was higher than you had been taking in pills.” Therefore the methadone doesn’t help your fm pain (and, implied, maybe you’re faking the whole thing). I quibble with this methodology but I was ready to accept his point and it was after that event that I made my longest most serious attempt to get off of methadone.

Over five months I cut the dose gradually (unknown to him: another result of the doctor/pusher fear-relationship is that the patient hoards medication––you’d be a fool not to––so why let him know I’d reduced the dose?) until for two months I took only a crumb twice a day, then once a day. Then I stopped altogether. The first day was okay; I’d been having various withdrawal symptoms for months anyway. But then it got worse, much much worse. For the next seven days I slept not at all. I quit even going to bed, just sat in the living room reading or surfed the web. After the first few nights my fatigue was so bad I couldn’t read, I just sat, or walked around. Nights were endless. My body was often wracked with bone pain, as if every bone were being crushed. My mind was flighty and ungovernable, my guts were gnawing as if I were starving. The methadone was right there in the bathroom but I persisted for seven days. On the eighth day I realized that 1) my symptoms were not lessening in any way, and 2) I couldn’t take another night without sleep. Within three hours of taking one of the hated white pills I was in bed asleep; the next day I felt almost normal.

The next time I saw the pain doctor I told him I’d done this and failed, and asked him how he might be able to help. Was there no sleeping medication, no tranquilizer or other drug that could be used temporarily to blunt the withdrawal? “No, there’s no magic pill,” said he. I felt like a demanding child who had asked for fairy dust to fix her boo-boo. When I pressed him, reiterating the symptoms, he said they were merely psychological.

Maybe I need a new doctor

Now I felt some solid ground under me. Research on methadone withdrawal had not yielded me much but I had found out what some of the symptoms were, and mine were common. This guy was wrong, and I had hope of finding someone who knew better. I tried my primary care physician; she told me that my symptoms were psychological. Just like him, she said that I could not possibly have had symptoms for seven days, because “even heroin is completely out of your system in 3 or 4 days.” She used the same exact phraseology as the pain doctor, whose office was in the building next door. Right, I thought. I’ve been seeing this woman for eight years and she parrots someone else’s words, not trusting my report of what I experienced. My pharmacist was more well-informed and confirmed what I’d experienced, giving me a few leads on alternatives.

The pusher drops the hammer on me

I dithered around for a few months, hesitant to step off into the unknown of a new doctor. Then came the day when my pain doc informed me blandly that he was “no longer comfortable prescribing methadone” for me since my pain was mostly fibromyalgia. His plan was to phase me off over the next two months. Sixty to zero (milligrams), zoom. I tried to be calm and asked “What about the withdrawal? I told you that it was intolerable, how are we going to get me through that?” “Those symptoms were merely psychological; it’s up to you to deal with them.” He was adamant. I was panicked. Abandoning calm, I asked him what he was going to do when I ended up in the ER. He ignored me. That was the last time I saw him. But I do hope he is comfortable.

It was the psychiatrist that I see (because fm has limited my life so much that eventually I became pretty depressed) who really came through for me. When I told this kind man about the two-month ultimatum, he took me seriously––he actually knew about the symptoms of withdrawal––and went online to research the matter further. In a physicians-only discussion group he contacted a pain doctor experienced in managing methadone withdrawal who confirmed my experience and spoke of alternatives. The phrase “managing methadone withdrawal” was like water in the desert. My psychiatrist recommended a different local pain doctor and I went to see him.

The new pain doc allayed my fears immediately. Yes, the symptoms I’d had were common. Yes, they were awful. Methadone, he said, is a synthetic opioid and it gets into the body more persistently than heroin; it can even be stored in the bone marrow, probably causing that unbearable bone pain I’d had. But there were ways to minimize the symptoms, there were choices, and he was sure we could get me through it.

Lesson #2: There are caring and knowledgeable pain doctors out there but you will have to know what you are looking for, and work to find them. Make a list of questions to ask people who recommend a doctor, and to ask doctors themselves.

From my experience, obvious questions for a prospective doctor would be:

What are the short- and long-term health consequences of the drugs you may prescribe? What different conditions may be contributing to my pain, and for each, how effective are the drugs you are prescribing? If and when I need to go off of opioids, how will you help me? How much experience do you have in this end of the process?

And ask yourself if you are willing to hand over so much control of your life, to this individual and this drug. I don’t travel much, but every time I did I worried about losing my methadone, or having it confiscated by airport security. Once when I travelled out of the US, to Chile, I was so concerned I got the pain doc to write me a letter verifying that I was authorized to have this controlled substance, this narcotic, so that I could feel less likely to end up in a foreign jail or have the medication taken away.

The first day I saw the new doctor, October 5, was the last day I took methadone. Surprisingly, he put me on morphine, a lower dose than the methadone, because it would moderate the withdrawal from the methadone and be easier to quit. (According to him, heroin and methamphetamine are also easier to quit than methadone.) And he prescribed sleep medication. He told me to call if things got too tough and he would adjust the treatment to work better.

The first two weeks were the worst; I was weak as a kitten and slept 18 hours a day without sleeping pills. After that, my strength gradually came back, and I began sleeping just at night (with the sleeping pills). I had some physical symptoms such as endless gnawing in my stomach, and constant sinus headaches and earaches, but after the first two weeks my mind and psyche began to feel completely different, as if I were coming out of a ten-year tunnel. My husband remarked on it: I was more talkative, personable, cheerful, confident. He felt he was seeing a person who had been gone for ten years. So did I.

Lesson #3: methadone does a lot more to you than just causing constipation, sweating, and sedation.

The amount of morphine was cut each month, and withdrawal symptoms lessened. On Feb. 5 the morphine ended––an anticlimax, no real difference!

I still have the sinus headaches, milder now, but if they never go away I am still so much better off that it’s hard to believe.

Life after methadone

I’m glad to see the well-known methadone side-effects go, of course; my attacks of sweating used to be so bad, even when I was sitting still, that my hair would be drenched, and outside activity would cause sweating so heavy that I would feel faint. This is much improved now, though still not normal. Then there’s constipation, which sounds like a minor thing, but when I had a colonoscopy I was told that I was at risk of getting diverticulosis because of the methadone-induced constipation.

As for sedation, at one point early on my old pain doctor put me on dextroamphetamine because I was too sleepy to do anything. It was easy to see why the amphetamines are so popular; I felt wonderfully energetic, smart, lost weight…but not a good long range life plan. Without the amphetamine the methadone caused fatigue on top of that caused by fibromyalgia.

And my old pain doctor had told me once, in an offhand manner after I asked about periods of breathlessness, that longterm methadone use could cause heart problems, but not mild ones like breathlessness. “How would I know if this was occurring?” I asked him. “You wouldn’t,” he said, “you’d just have a life-threatening episode of heart failure.”

But it was the completely unexpected and, as far as I can tell, undocumented changes that really have made life different. Chief among these are the psychological changes that I described above. I’m more outgoing, more able to engage in activities with small groups of people (though––typical of fibromyalgia––crowded places/noise/smoke/bright lights make me exhausted very quickly, so I avoid them). My depression used to edge back despite anti-depressants, but that has not happened in the three months since I went opioid-free. I feel more pleasure in life. Both my attitude and my energy are improved.

While taking methadone I must have dreamed at night, but remembered dreams perhaps once or twice a year. That made me feel cut off from a part of myself, and I am pleased that now I’m remembering dreams a few times a month.

Physically also there were unexpected results. I no longer eat between meals, feel no interest in doing so. If my stomach growls I am not seized by uncontrollable impulses to eat something. And what I eat has changed. Always a chocolate lover, I’d worked up to 1 or 2 candy bars every afternoon while taking methadone; the pull was almost irresistible, and the pleasure though short-lived seemed like something I could not give up. Now, the candy bars from last October are in a box in the pantry; in six months I’ve eaten one, and in the middle realized it was really not all that great. We got a box of See’s candy after Christmas and I enjoyed it a lot, but I can take it or leave it. The opioids are notorious for giving junkies a sweet tooth, so maybe I should have anticipated that my chocolate craving would go away. But it’s worth noting that the craving vanished during the first month off methadone, while I was still taking morphine.

Here’s one that seems very much out in left field: for years my vaginal tissues have been extremely tender and painful, even bleeding, and my gynecologist had concluded it was just post-menopausal stuff. I declined full-on hormone replacement therapy and nothing else we tried helped. Two or three months off methadone, and this began to change. No, I cannot see any causal connexion either, but that doesn’t mean that there isn’t one. It’s not psychosomatic, because I never thought about it as something that might be related to methadone. I mention this––even though I am not really comfortable discussing such matters in public––because I’ve never seen this in any list of methadone effects, and no woman would ever think to associate the two.

My reason for this post is to get more open discussion of all these issues related to chronic pain management so that others will have better information, feel less stigma about pain and opioid use, and make better decisions. I was ignorant, felt helpless and trapped, and let the matter go on for far too long; nothing can give me those years back.

Before you try opioids for chronic pain

Consider all these factors carefully before you embark on long-term use of methadone, morphine, codeine, oxycodone, and so on: Efficacy will lessen over time. Side effects, including ones you never expected and may not attribute to the drug, will increase. Dependency comes with the drug, including dependence upon the prescriber.

Educate yourself about your condition and any proposed drug. Choose your provider very carefully. Try other pain-relieving or pain-distracting methods: at any dose you can live with, opioids don’t entirely relieve pain, so you may as well look for another source of partial relief that is adequate without all the baggage of the opioids. Look for a way to feel a sense of some control over your pain: find out what aggravates it and what distracts you from it.

Don’t be too skeptical to try things like warm-water exercise or swimming, resting with your favorite music, or finding a hobby or interest that distracts you and brings you into the “flow” mental experience described by Mihaly Csikszentmihaly (whose books (see footnote 1) are a lot easier to read than his name is to spell!). “Flow” is that mental and emotional state of being so involved in a positive activity that time passes without notice. Its requirements are that the activity be something you want to do, and something that is challenging (with lots of potential for you to improve and grow) while not being so hard it’s frustrating and unpleasant; and having clear goals––my goal is to get better at this, and my next step is to try such and such. People can experience flow in all sorts of work, craft and art, and mental activity: knitting, fishing, fixing a car, playing music, doing puzzles, reading, learning something new, you name it. Think of a kid putting together a model airplane or choosing to practice something over and over. It’s basic to the human brain, but is pushed away by stress, time pressure, worry, and so on. Get back to it at times and for that time it can push away pain and stress, and give you a little feeling of control and of life being worth living in spite of pain. Things that have worked for me include reading, doing online research, bird-watching and other outdoor interests, writing, good conversation, watching movies, and drawing or painting (in which my goal is to get better, and considering where I started that is no problem! but it’s okay, I see little improvements and I enjoy the process itself, which is key).

Some kinds of pain respond to mild exercise, which can produce endorphins, distract the mind, and tone the body so it supports movement with a bit less pain. Go slow and be determined. There’s increasing research to show that chronic pain often causes depression, and depression can be treated. If you are carrying pain around every day, that doesn’t mean you also have to carry around depression. And, it’s possible to use some opioids like codeine off and on, just when the pain is worst.

Keep learning about your condition, keep asking questions, keep trying positive things that might help even a little.

None of this is meant to minimize pain, tell you to wish it away, or imply that you “should” be able to control it better than you are. Pain is real. Until people live with chronic pain they don’t realize how draining it is, mentally and physically.

But. As the saying goes, “Every day above ground is a good day,” and it is possible to make (almost) every day better.

Footnote

(1) For example, Finding Flow: The Psychology of Engagement with Everyday Life. Your library probably has some of his books, or do a websearch and read an article or two. Some lectures of his are online here.

Methadone.jpg

Image above: Methadone molecule, from 3dchem.com