Bad Science: Housework helps combat anxiety and depression

I’m a subscriber to New Scientist, the British weekly magazine of science news for the rest of us. I subscribed to Science for a while too, because it publishes researchers’ actual articles, but decided I’d rather have more numerous reports with less math. New Scientist contains short reports and a few longer articles as well as interviews, and a great feature at the end where people write in requesting explanations for odd observations (very British, I think, in the tradition of the journal Notes and Queries (1849 – present), or letters to the London Times from country parsons reporting the first sighting of a bird).

Anyway, though I still find NS interesting and valuable, I’ve begun to feel they are sometimes sacrificing science for snappy headlines. Here’s an example that is from a while ago, but quite illustrative.

Housework helps combat anxiety and depression

FEELING down? You might be able to dust away your distress. Just 20 minutes a week with the vacuum cleaner or mop is enough to help banish those blues, and sport works even better.
That’s the message from Mark Hamer and his colleagues at University College London, who wanted to find out what benefits arise from different types of physical activity. They examined data from questionnaires filled in by almost 20,000 Scottish people as part of the Scottish Health Surveys, carried out every few years. Some 3200 respondents reported suffering from anxiety or depression, but those who regularly wielded the mop or the tennis racket were least likely to suffer, the researchers report (British Journal of Sports Medicine, DOI: 10.1136/bjsm.2008.046243).

One 20-minute session of housework or walking reduced the risk of depression by up to 20 per cent. A sporting session worked better, reducing risk by a third or more. Failing housework or sport, says Hamer, try to find something physical to do. “Something – even for just 20 minutes a week – is better than nothing.”

––From issue 2652 of New Scientist magazine, 19 April 2008, page 4-5. Abstract of original available free, entire article requires fee to BJSM.

Why we shouldn’t believe this

In New Scientist’s brief bit, there’s absolutely no evidence for a causal relationship between exercising and being less depressed. It’s an example of the frequent, but quite false, assumption that because two things are associated, one causes the other. Other relationships are quite possible. Does physical activity really reduce depression and anxiety, or are the people who actually do housework or sports simply the ones who have less severe symptoms to start with? Or is there some other connexion altogether? Nothing in the New Scientist, or the article abstract, addresses that question. But it makes an eye-catching headline, to say that housework cures depression.

To investigate the question scientifically, it is necessary to take a large number of depressed people and randomly assign them to one of three groups: an exercise group, a control group given some other task like filling in a weekly questionnaire or reading about depression, and a third group who don’t get any new activity or other attention from the researchers. (Ideally those doing the testing and analysis don’t know which group is which.) Then, at the beginning and end of the study, measure psychological state using some accepted reliable tests and see what changes. Finally, use statistical analysis to see if the changes are significant or might be due to chance. [Even after that, other factors may make the apparent conclusions false: maybe the exercise was not enough to have an effect, or during the study the country went to war and everybody stayed depressed, or the social aspects of being in an exercise group had more effect than the actual jumping and sweating did.]

No doubt such a study has been done, probably more than once; advising depressed people to get more exercise is a standard approach and insurance companies would love to fund the research to support it. Mark Hamer might have cited previous work in the full text of his article in the British Journal of Sports Medicine (which New Scientist should have read before writing their brief and provocative piece) but we readers have no way of knowing this.

In this particular case––the effect of exercise on individuals––researchers would have to be vigilant about the distortion of results due to participants dropping out or failing to comply with the activity levels. Even the method of choosing participants can affect reliability of results: if the depressed people are chosen from those who show up at clinics, their symptoms may be overall less severe than the symptoms of people too depressed even to go to a clinic.

A similar example: exercise and fibromyalgia

I have fibromyalgia, and some researchers have pronounced aerobic exercise to be beneficial for reducing the symptoms of this condition’s chronic pain and fatigue. Exercise is fundamentally a good thing, I agree. It distracts one from symptoms, adds an interest, may confer a feeling of control over one’s illness, strengthens muscles, promotes growth of new neurons in the brain, and can improve flexibility.

But. In moderate to severe cases of fibromyalgia, even mild exertion can cause greatly increased pain and exhaustion. Unlike the familiar “weekend athlete” reaction, the increased pain and fatigue may last a week or several weeks. This means that for some individuals the goal of walking briskly for a few blocks could take years to attain, since we are knocked back to the starting point when we overdo, or when something else in our lives like a cold or interrupted sleep aggravates our symptoms.

Some time ago I read a review article which gathered the results of a number of studies on exercise and fibromyalgia, and I noted that in some the dropout rate was high but wasn’t mentioned in interpreting the data. And then there are people, like myself, who would never enroll in an aerobic exercise program because we’ve “been there, done that” and it was painful and unproductive. If we’re not counted, and a high dropout rate is glossed over, then to whom do the results apply?

What can we say about exercise, then?

I am skeptical of the efficacy of exercise as a general one-size-fits-all prescription for fibromyalgia or depression. I would suggest the fibromyalgia studies really show that exercise appears to be helpful for those people able to endure it, but, while all patients should be encouraged to do appropriate activities as tolerated, there’s a need to be gradual and cautious. Some patients may never be able to attain exercise levels that make appreciable improvements to their symptoms, despite sincere efforts. (This doesn’t mean that exercise is without benefits to them, though. My level of physical activity doesn’t seem to help my pain, fatigue, or quality of sleep, but I’m much happier when I get out for a walk or a bit of gardening.) At an education class on fibromyalgia, I heard someone ask “How can I exercise when even walking around the house is too strenuous?” The reply was, “Can you get up and walk all the way around your kitchen table? Good. Start with that and work up.” Sensible advice, but actual improvement in symptoms may be a very long time in coming for that person.

For depressed people, exercise is unlikely to be harmful and may indeed help––I myself believe that it does––but there’s no evidence of that in the New Scientist account of Mark Hamer’s work.

I felt this was worth writing about for two reasons, one general and one particular. It’s a good example of how the media gives us accounts of scientific research without the details needed to evaluate them. And, invisible conditions like fibromyalgia and depression are different from most other health problems. They are regarded by many as non-ailments or personal weakness/malingering, so it is easy for “exercise may help” to become “quit complaining, pull up your socks and get on with it”. From there it’s a short step to “all these patients could feel better but they just won’t do the work necessary; they cling to their disease.”

And I have to admit that the example used, housework, was particularly galling to me. While there are people who can enjoy housework as a zen activity, or feel great satisfaction at making their floors and sinks shine, most of us (male or female) do not get much pleasure at all from it. Every time you do it, next day there it is again, dirty dishes, laundry piling up, dog hair floating across the floor. Truly, housework is never done. And, given that housework is still seen more as a woman’s responsibility than a man’s, and that women have a higher rate of depression than men, the “FEELING down? You might be able to dust away your distress” line seems offensively sexist and dismissive.

Or should it be classified as “fantasy”?

I was searching the Quality Paperback Book site for “science fiction’, and the last of 8 matches was

THE NEW SCIENCE OF GETTING RICH

by Wallace D. Wattles, edited by Ruth Miller

Book- Softcover / October, 2007 / QPB Price: $10.99

I thought this was an amusing computer error, but after I read the club’s description of the book, I see that it is just honesty in advertising…

QPBBkReview.jpg

Are you obeying the Law of Attraction?

If you’re not, you should. You see, there’s more to getting rich than your talent or your environment. There’s a natural law, the Law of Attraction, which stipulates that specific actions always produce the same results—and money, property and success are among them. Learn the simple equation behind acquiring the riches you’ve dreamed of, and your dreams will become reality.

That’s the message of The New Science of Getting Rich. Originally written by Wallace D. Wattles over a century ago, this hugely influential text inspired Rhonda Byrne’s The Secret and has been fully updated for the 21st century by Ruth Miller. Don’t be a Law-breaker—follow this clear-cut guide and strike it rich!

QPBdivider.jpg

With all the excellent science fiction being written today, why has QPB got only 7 titles? And among those 7 are a Steven King, a DVD of X-Files, and a collection of century-old horror and fantasy by Rudyard Kipling.

But QPB has become rather flaky in recent years, flogging fluff and worse. There are 5 hits on a search for “astrology”, and only 4 for “astronomy”; 35 matches for “healing” (a word that I would like banned for a decade or so) including books on the healing powers of olive oil, and vinegar, and water. And Angel Healing, in which you can “Learn to direct angelic color rays through your hands and thoughts to transmit energy and the healing power of angels.”

Another “healing” title offered by QPB is The Miracles of Archangel Michael, wherein author Doreen Virtue, Ph.D. will show you “how to contact Archangel Michael, the powerful protector, and work with him for physical and emotional healing”. The publisher of this last one is Hay House, whose site shows that they specialize in this variety of self-delusion, with other titles (on its site) including
28 Days to a More Magnetic Life
Fractal Time: The Secret of 2012 and a New World Age
and Psychic Healing: Using the Tools of a Medium to Cure Whatever Ails You.

O tempora, O mores! (And what else is new, eh?)

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.”





Contagious happiness?

Are we so hungry for meaning in our chaotic world, that mere association is automatically assumed to be proof of a cause and effect relationship? Again and again, the media seizes upon research results (sometimes with the eager cooperation of the researchers) and touts them as proof that A causes B.

Latest in this parade of dubious connexions is the study which found that happy people tend to know a lot of other happy people, and the more happy people in your circles of acquaintance, the happier you are. Ergo, knowing happy people makes you happier!

An article about the study says:

The scientists found that a person’s happiness is most likely to boost the happiness levels in people closest to him — spouses, relatives, neighbors, and friends.

But, if one person is happy, that increases the chances of happiness in a friend living within a mile by 25 percent. The “cascade” effect, as the researchers put it, continues: a friend of the friend has almost a 10 percent higher likelihood of being happy, and a friend of that friend has a 5.6 percent increased chance.

In the other words, one person’s happiness can spread outward through three degrees of separation. Those at the center of such circles may be people that “you have never met. But their mood can have a profound effect on your own mood,” Fowler said.

HappinessGraphic2.jpg

Fig 1 Happiness clusters in the Framingham social network. Graphs show largest component of friends, spouses, and siblings at exam 6 (centred on year 1996, showing 1181 individuals) and exam 7 (year 2000, showing 1020 individuals). Each node represents one person (circles are female, squares are male). Lines between nodes indicate relationship (black for siblings, red for friends and spouses). Node colour denotes mean happiness of ego [individual being studied] and all directly connected (distance 1) alters [alters are persons connected to the ego, potentially influencing the behaviour of the ego], with blue shades indicating least happy and yellow shades indicating most happy (shades of green are intermediate).

Figure (reduced here) and caption are from the full article, in the British Medical Journal.

The original article’s abstract says in part,

Results Clusters of happy and unhappy people are visible in the network, and the relationship between people’s happiness extends up to three degrees of separation (for example, to the friends of one’s friends’ friends). People who are surrounded by many happy people and those who are central in the network are more likely to become happy in the future. Longitudinal statistical models suggest that clusters of happiness result from the spread of happiness and not just a tendency for people to associate with similar individuals. A friend who lives within a mile (about 1.6 km) and who becomes happy increases the probability that a person is happy by 25% (95% confidence interval 1% to 57%). Similar effects are seen in coresident spouses (8%, 0.2% to 16%), siblings who live within a mile (14%, 1% to 28%), and next door neighbours (34%, 7% to 70%). Effects are not seen between coworkers. The effect decays with time and with geographical separation.

Conclusions People’s happiness depends on the happiness of others with whom they are connected. This provides further justification for seeing happiness, like health, as a collective phenomenon.

So that’s clear: happiness is somehow “contagious”! By this line of reasoning, we could investigate the contagious effects of race, profession, sports fanaticism, and most anything else. I must have become white (and stayed that way) because nearly all my friends are white; a lawyer is a lawyer because he or she knows so many lawyers, and so on.

On a certain level, I have no argument with the direct “contagiousness” of positive emotion: it certainly cheers one up to be around smiling ebullient people. I still remember a dark rainy day, decades ago, when I was walking gloomily across my college campus and passed someone smiling and carrying a bright bouquet of flowers. It actually did change my mood, I smiled back and was bumped out of my self-absorbed thoughts. But then, the same effect might well have resulted from other stimuli that are enjoyable to me: seeing a horse running in a field, reading something that introduced a new idea, even coming in out of the rain into a warm inviting place. And if I do things often enough that elevate my mood, I will probably be in fact be happier than if I do the opposite: but these are choices, not influences beyond my control.

When it comes to a person’s close associates, surely Pollyanna chooses to hang around mostly with other cheerful folks, rather than letting Cassandra or Gloomy Gus bring her down. Perhaps really unhappy people are hard to be around and don’t share the interests and types of conversations that are common to happy people. Some people have truly terrible experiences dealt them by fate, and are unhappy; with others you feel like a good kick in the pants to get them out of being so self-centered would go along way toward changing their mood; either way, it seems entirely reasonable that the positive happy busy people tend to associate more with others of their own “type”. What was that result of an ancient sociological study? Oh yes: “Birds of a feather flock together”. The data has been lost but the conclusion has survived.

Some of the dots on the graph are family, who may be viewed as unchosen associates. Or are they? Do we know if the researchers counted that grumpy cousin I don’t like and never see (though she lives only five miles away)? And other studies have shown that there are genetic factors influencing traits such as agreeableness and extroversion which may be associated with degree of happiness. So, if happy people tend to have happy sibs and cousins, this could be caused more by shared genetically-influenced traits than by their “contagious” influence on one another.

And, in a long-term study of human behavior like this one (twenty years), some less happy people who are around happier people may indeed benefit from the activities, the “vibes”, may even learn better behavior or learn how to fake it…but those who don’t will tend to drop away from the setting where they feel out of place. Or won’t be invited so often because they “just don’t seem to enjoy our dinners or outings”. So over time people settle out into groups they feel comfortable with. This can’t be really big news. Animal-study researchers don’t count many fervid PETA members among their circles of friends and close acquaintances, and vice versa. There’s a cause and effect here all right but it may not be the one being alleged in this study.

I should admit the obvious, that I don’t understand regression analysis and the other statistical tools that are used to verify the significance of associations in studies like this one. However, I don’t think it matters. We’re not talking about whether the associations exist, but about what they mean.

This is, of course, the weakness with observational studies as opposed to experimental ones. All the observer can say is what was observed; cause and effect relationships are speculative in all but the simplest of situations (dropping things off a tower, for example: Yes! they fall because they were dropped!). In this case, an experimental study might try to find a way to cause happy and unhappy people to hang around together for months or years and see what the results are. But how can this be done without denying people freedom of association, which is a factor in happiness? We could pay them to gather together, but what about those for whom no money is enough to make tolerable the company of such damnably cheerful/such oppressively dismal folks? Individuals have even been known to change jobs because they couldn’t stand the people they worked with.

Figuring out complicated things just can’t be as easy as the media, and perhaps some scientists, would wish. And in this discussion, we haven’t even gotten to evaluating the definition of “happiness”!

Timeline and map of Mumbai terrorist attacks

Anyone who is looking for a concise orderly picture of the multiple terrorist attacks in Mumbai, and timeline of the attacks and response, cannot do better than the UK Guardian’s page by their guy Paddy Allen.

Events have gone on now for 3 days, starting before midnight on the 26th, and the timeline covers all three days (click on “Next” to view successive parts of the timeline, and on the camera symbols on the map to see some still photos). The Guardian also many articles providing good coverage and analysis.

This is the sort of information presentation which television news could do, but never seems to bother with. They have the computer graphics and know-how, they have our visual attention, but they squander our time showing us repeats of a few dramatic scenes or unidentifiable scenes straight from local news channels. For run-of-the-mill stories we have to watch file footage of pills running through a counter while the presenter talks about health care problems, Big Pharma, or the latest drug recall; our eyes could be better occupied watching informational graphics to fill in other aspects of the story. Most of us can take in information a lot faster than a tv anchor talks, so we are left twiddling our mental thumbs. Print media does a much better job with information graphics (and always gives more background and information than tv) but of course cannot compete with the web for timeliness or interactivity. No wonder people turn away from tv news, to web news sites.

Fibromyalgia, a personal overview

Preface

This is the second long post I have written about fibromyalgia (fm); the first concerned my experience with methadone, chronic pain, and fm. Click on “fibromyalgia” in the subject list at right to find it. There will be more in this series. Inevitably there will be some overlap between them, some repetition.

At the end of this post I will include links to some sites I think are useful. Some provide summaries, for us non-scientists, to current research; others explain the disease, give hints on living with fm, and track new drugs.

I was diagnosed with fibromyalgia in 1992, although the symptoms began about 1984. In 1980 I suffered a disk injury which caused chronic pain and poor sleep from then on. I worked at a full-time job that was physically active and psychologically stressful. By the time the disk problem was resolved (1996), ending the muscle spasms, the chronic pain/sleep problem had developed into fm.

The pieces I am posting here about fm are based solely on my experience, observation, and reading.

Five million patients with no treatment or cure

It’s hard to imagine today, but as recently as the late 1800’s there were still big blank spots on the map of the world, places unexplored save by their inhabitants who kept their knowledge to themselves.

Fibromyalgia is a big blank spot on the map of 21st century medicine. Its inhabitants comprise about 5% of the women over 18 in the United States and 0.5% of the men (data from 1995 study, see note 1). Since there are about 150,000,000 women in the US, and about 86% are 20 or older (this was the closest I could come, quickly, to the number of “women over 18”), then 86% x 150,000,000 = 129,000,000 and 4% x 129,000,000 = 5,160,000 women in the US with fm. For men (who may be under-diagnosed for various gender-based reasons such as stoicism or physician bias toward fm as a women’s disease), one-half of one percent = 645,000. Fibromyalgia is also diagnosed in those under 18, although they are not covered in these statistics. Studies indicate similar prevalence in other countries although there is a wide variance in results (from under 1% to over 10%) due perhaps to varying protocols and definitions, and the small size of some studies.

When I say there are no treatments, perhaps I should explain that. There are treatments that provide some relief of some symptoms for some patients. It is worth seeking out what works for you but don’t go broke doing it. I know of no medical treatment that works significantly for all pwfm. Remember that every drug has side effects; they vary from individual to individual, and what may be intolerable to one person is an acceptable trade-off to another. I tried Lyrica, the first drug approved specifically for fibromyalgia, and had two problems with it: by the time it began to lessen the pain, it was too sedating; and it caused unacceptable weight gain. Also, being a new drug, it was quite expensive. I hope others have better luck with it.

Current research is very promising as far as symptomatic relief and sleep improvement. Check out the sites listed at the end once in a while to keep up on things.

There is no cure. Beware of anyone making such claims. When you read of Jane Doe who has had a complete recovery with Dr. Quack’s treatment, remember: it may be she never had fm, or had only a very mild case, or is suffering from self-delusions (as in faith healing), or maybe (gasp!) she does not even exist.

What are the symptoms?

The official diagnostic symptoms are widespread musculoskeletal pain, severe fatigue, and disturbed sleep, in the absence of another provable explanation (see note 2).

This is a typical description of the condition itself:

Fibromyalgia (FM) is a chronic pain disorder characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle, and hands, but any body part can be affected. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time. [National Fibromyalgia Association]

Here’s a list of common symptoms that are considered part of fm:

Severe fatigue

Poor sleep

Stiffness

Poor memory

Headaches

Restless legs

Irritable bowel

Overactive bladder

Depression

Exercise intolerance

Low back pain

Numbness and tingling

Painful periods

Muscle spasms

Jaw pain [TMJ]

Excessive tenderness

Sensitivity to bright lights

Sensitivity to loud noise

Sensitivity to perfumes

Sensitivity to weather changes

Excessive anxiety

Poor balance

Cognitive difficulties are very common: poor concentration, lack of memory, inability to locate everyday words when speaking, general confusion.

The group of pwfm is extremely varied. Some individuals have severe fm, others have milder cases. Some can work, others can’t. And any one person feels better and worse, sometimes in response to exertion or stress or the weather, sometimes due to no discernible cause. In addition, there are other very serious conditions sometimes found along with fm, such as lupus–but there’s no evidence that fm causes these other conditions.

Fibromyalgia and sleep

Sleep, for those with fibromyalgia, is officially described as “non-restorative”. This word feels inhuman and bloodless but it is accurate. People with fibromyalgia (hereafter pwfm) commonly describe their state upon awakening in the morning, as something like “feeling as if I’ve been hit by a Mack truck.” Before I heard this, before I was diagnosed, I used to say I felt as if I had been forced to run up a mountain all night and then kicked and rolled all the way back down.

The lack of restorative sleep, stage 4 sleep, may in itself be sufficient to cause the other primary symptoms which patients report: never-ending fatigue, of course, as well as overall muscular pain in which a pat can feel like a slap, inability to concentrate or remember, confusion.

Early on, a researcher (H. Moldovsky, 1995) reproduced the major symptoms of fibromyalgia in healthy young volunteers–males, as I recall–simply by depriving them of sleep. Parents of colicky infants could have probably saved him the trouble of performing the study. Having the sleep/fm connexion established, however, has not led to any substantial advances in treatment, let alone cure or prevention. No one can figure out exactly why we begin to sink into stage 4 sleep, and then are pushed back up into other less deep levels of sleep.

Without exception (as far as I know) pharmaceutical sleep aids do not promote a normal level of the stage 4 sleep (deep, slow-wave, non-REM sleep) which pwfm lack. It is certainly preferable to be unconscious in bed at night, instead of up reading in the living room for 4 or 5 hours. But sleep aided by pills doesn’t provide the rested feeling of a normal night’s sleep.

It is important not to oversimplify the association of disturbed sleep with fm. By which I mean, thinking that if only we could fix the sleep somehow, everything else would fall into place. Here are my reasons:

a) sleep may be the proximate cause of most or all of the symptoms, but it in turn may be at the end of a long chain of other things that have gone wrong, a cascade of causes.

b) Sleep, as a process, is very complicated and powerful: not only are there various stages or depths of sleep, but it interacts profoundly with the endocrine system. I won’t even add any other points of interaction with sleep, because once the endocrine system enters into the discussion as far as I can tell it is like 6 degrees of separation: now everything is connected with everything else, AND (unlike 6 degrees of separation) interacting and modifying everything else. Like a room full of kindergartners racing around all hyped up on sugary cupcakes, each one affects all the others as well as the total state of chaos. If we tie all the kindergartners to their chairs, have we ‘fixed’ this situation? If we achieve or impose ‘normal’ structures of sleep, have we ‘fixed’ fibromyalgia? There may be abnormalities in the sleep processes of pwfm that we can’t even detect, at a biochemical level. That said, obviously pwfm would be lining up in the snow to get the first tickets for that experimental ‘normal’ sleep!

PWFM: Our bodies are working differently

Many detailed studies have found specific physiological/biochemical ways in which pwfm vary from the norm: a substance that helps carry pain messages is found in abnormally high levels in their cerebro-spinal fluid; their threshold for pain is lower than that of other people; they suffer from a sleep disorder in which stage 4 sleep (most restorative stage of sleep) is continually disrupted; high levels of a nitric oxide-producing enzyme were documented by one research team to help explain why patients have exercise intolerance; excessive levels of oxidative chemicals that irritate the tissues (perhaps causing some of the constant overall pain) were found in the connective tissues in the tiny space between the muscle fibers; neurotransmitter disorders exist (serotonin and/or dopamine); atypical brain activity occurs in response to pain and other stimuli; and on and on. (For a partial list of such findings see this page on the excellent Fibromyalgia Network site.)

But, surprisingly, with all this detailed knowledge we seem no closer to real treatment or (in my dreams!) a cure. Is any of these abnormalities the “cause” of fm? For most, it doesn’t seem likely; filtering out the excess pain transmitter (Substance P ) from my cerebrospinal fluid, in some science fiction method not yet discovered, probably would not work. Whatever is causing my body to make or accumulate extra Substance P would just restore what it sees as my “norm”. Looking at this large and varied collection of anomalies, one may be the prime mover, and the rest secondary. Or, it is quite possible that we’ve not even glimpsed the “first domino” yet.

As far as I know, none of these differences from the norm are likely to become part of the process of diagnosing fm. Most are invasive and expensive, and not all of these variances would be found in all fm patients. Their value lies in directing further research, and in reassuring us that there is a physical basis for what we experience.

There does appear to be some genetic predisposition to fibromyalgia: diagnosis in mother/daughter, sister/sister, etc., is more common than is statistically likely. Now that genetic analysis has been made so much faster, research is going on to find out genes that may be associated with fm. A great development, but don’t hold your breath waiting for it to help you. Individual cases of fm vary greatly in severity and symptom profile, so this seems like it will be a complicated puzzle to solve even when/if gene differences are found.

Psychological aspects of fm

Pwfm, like many other chronic disease sufferers, are sometimes treated dismissively by doctors and friends/acquaintances. The disease is unfamiliar, non-fatal, rarely puts anyone in the hospital, and invisible as far as gross physical signs. “But you don’t look sick!” we hear, and I suppose it is meant to be encouraging but it comes across as suspicion of malingering, or at least denial of how crappy we really do feel.

Speak of a heart attack, rheumatoid arthtritis, diabetes, blindness, and you’ll rarely be greeted with “Oh, yes, I had that last week, I know just how you feel, but you’ll be fine with a good night’s sleep!” But fatigue, poor memory, achy body–everyone’s experienced this, and so they think they really do understand what we, and others with invisible chronic conditions, are enduring. And their understanding is generally based on experience which was mild, like the slight dulling of memory we all experience with age; or on something which improved quickly, like pain from over-exertion. I think it is better to say little about it, in most cases. Let your family know why your abilities are not the same as they were, and ask for their help, but otherwise keep your mentions minimal.

If you must raise the subject at your job, to ask for change to part-time work, or some other adjustment at work (provide seating for you, use plastic wheelbarrows instead of steel-binned ones, provide more varied work) choose your time and place, and be prepared with a letter from your doctor about your limits as to lifting, standing, etc. Present the supervisor with solutions enabling you to continue, don’t present yourself as a problem for the supervisor to solve. He/she has one easy way to do that! [Being quite unable to work is a different situation, one which I will talk about in a future post.]

Depression is not uncommon among pwfm and this has been used against us, as proof that it is all in our heads, perhaps even some sort of not-quite-conscious choice to be sick in order to get disability or attention. Anyone who could step into the world we experience, for a week or so, would see how untenable this idea is.

Before I was diagnosed, when I thought it was just stress, or even lack of exercise, I was forced to go through a process that I likened to throwing everything possible overboard off a sinking ship. In terms of one’s life, this means everything except job and necessary life-maintenance. Nothing fun–you’re way too tired to take in a movie, do some baking, play with kids or dogs, have fun with your dearest one. Concentration and memory decline sharply, further limiting one’s activities.

I already worked a fairly physical job but thinking I needed more exercise I got a puppy so I would have to walk and be active more. How did this work? Well, I was able to train her to take off my socks at night when I got home after work and took off my boots. She’d pull them off and then hand them to me, saving me two painful bending actions. [I could have asked my dear husband to do this, and he would have done so willingly, but I resisted things that would have made me feel more damaged than I already felt.] But the more exercise part was not helpful. Still, she was a lovely dog and worth all the extra exercise.

Anyway, depression seems like a very normal reaction for someone who has thrown overboard nearly all the enjoyable parts of life, is exhausted and in pain all the time, and has no hope for improvement (as you do after a terrible bout of the flu, which brings a similar exhaustion though not the overall pain).

If I’ve just lost my entire beloved family in a car crash, nobody except a reporter is going to ask me how I feel; anybody with a heart knows how I must feel and accepts it as entirely normal. This is depressive feeling arising from circumstances. Fortunately, our minds have ways to lessen, over time, the depression that results from the losses common to human life. Deep sadness and regret remain, but feeling a paralyzing loss of life’s significance, of its savor, gradually lessens with the passing of months or years for most people.

However, humans haven’t evolved ways to mute the depression from ongoing life-robbing conditions. Being a quadraplegic, being in a concentration camp, having severe diseases such as lupus, PTSD, or rheumatoid arthritis, these are a daily assault on the core of one’s being and one’s desire to live. Naturally, people get depressed, whether they try to hide it or not. [Please note that I am not setting up any comparisons of suffering here! I’m not saying x is like y or a is worse than b.)

There is considerable research to support the assertion that depression does not precede, and therefore perhaps cause, fibromyalgia: for instance, pwfm are no more likely than others to have been depressed prior to having the symptoms of fm; the degree of depression has no quantitative relation to the degree of pain; and chronic pain sufferers as a group, regardless of cause of pain, have a high rate of depression. I cite only one study (see note 3) but there are others.

A few practical recommendations

Another reason that depression and fibromyalgia have gotten connected in the minds of doctors is that, early on, it was found that certain anti-depressants seemed to relieve some of the pain of fm. Sometimes they do help, sometimes not. Maybe it’s placebo effect, maybe not. If you are offered anti-depressants for the relief of symptoms other than depression, be sure to discuss with the doctor what happens if this doesn’t provide relief, or if the side-effects (often weight gain is a potential side effect, and that makes you more tired) are intolerable. Make another appointment for evaluation of the treatment.

You must find a doctor who will work with you long-term, not one who writes a prescription and then feels his/her duty is done. Accept that fm, more than most conditions, demands that the patient take a very active role. A well-read fm patient is often more familiar with the disease and available treatments than her doctor is. That has been my experience and I have heard/read it from many others.

Find a doctor who can accept new information from a patient; bring in articles from medical or fm journals (not just news reports); and be diplomatic but firm if you really want to try something (or really don’t want to try something the doctor is pressing upon you). Learn from your doctor, ask questions. Educate yourself, learn coping mechanisms, stay away from anything that claims to “cure” this condition. When a cure arrives, believe me, we’ll all hear about it from many authoritative sources, not just from a TV report or the individual champions of a new herb or drug!

And as with any chronic condition, it is extremely useful to keep some sort of a daily journal: doctors and insurance companies really like record-keeping, and it will help you understand, for example, whether a given treatment is not helping or if the problem is that you had house-guests one week and worked overtime the next. No long entries needed, better two lines every day than two pages once a week. Rate your pain, your feeling of ‘functionality’, and your fatigue, from 1-10 (average for the day); note unusual events that could affect how you feel; note any variations in sleep such as getting to bed late, extra trouble sleeping, too painful to sleep. Okay, maybe that makes 3 lines, but if you can make yourself do it you will find it invaluable in dealing with your doctor, with any possible disability situation, and even with your fibromyalgia: it will give you a small feeling of control in that you can look for connexions, for cause and effect, for trends.

True clichés

Don’t give up. Your ailment is not your life. Don’t let it consume you.

Every person on this planet lives his/her life within some sort of limitations: intellect, means, education, health, social strictures or upheaval, and so on. If fm is one of your limitations, take it on. (The other choice is…?) Be flexible and smart and keep fine-tuning what makes you feel better (or less bad). Seek out the joys of life. Be as active as you can be physically and mentally, and don’t become self-absorbed. When you have a really bad day remember it won’t last forever (you may want to write this on the wall).

Notes

1.Wolfe, F et al. Prevalence of characteristics of fibromyalgia in the general population. Arthritis and Rheumatism 38:19-28, 1995.

2. The formal diagnostic criteria, established in 1990 by the American College of Rheumatology, are:

1. A history of widespread pain in all four quadrants of the body for a minimum duration of three months.

2. Pain in at least 11 of 18 designated tender points when the doctor applies four kilograms of pressure.

3. Giesecke T, Gracely RH, Williams DA, et al. The relationship between depression, clinical pain, and experimental pain in a chronic pain cohort. Arthritis Rheum 2005; 52:1577-1584

Links

The Fibromyalgia Research Blog

The Fibromalgia Information Foundation Information is provided by clinicians and researchers at Oregon Health & Science University in Portland, Oregon, USA and invited specialists from other locations. OHSU has an excellent clinic and research effort dedicated to fm (based on my personal experience).

The Fibromyalgia Network Also publishes the quarterly Fibromyalgia Network Journal; I recommend it. You can sample articles online to see if it is for you. Try to get your public library to add it.

The American Fibromyalgia Syndrome Association, Inc. (directly funds research)

The National Fibromyalgia Association

RomanMetalwork.jpg

Adornment to a Roman legionary’s horse harness; copper alloy with glass mosaic. First century AD? Source.

Procrastination

My lifelong habit of procrastination has gotten worse in the 20 years I have had fibromyalgia. The pain and fatigue limit one’s activities, both physical and mental. So I was intrigued by references to Structured Procrastination. John Perry, an academic, says it works for him:

the procrastinator can be motivated to do difficult, timely and important tasks, as long as these tasks are a way of not doing something more important.

Structured procrastination means shaping the structure of the tasks one has to do in a way that exploits this fact.

Just add non-urgent but seemingly more important tasks to your list, then in avoiding them you will do some of the others.

But there are some problems with this. One is that it requires a disciplined prioritizing method where finally all the projects you really intend to do get done, if only by adding another more formidable project to push others to the top of the list.

However,

• the real procrastinator lacks discipline, ipso facto.

the real procrastinator knows that there is no top of the list.

• and the real procrastinator is adept at doing things not on any list in order to avoid things on the list. I can spend a whole afternoon researching fascinating things on the web, which have very little to do with anything I’m actually doing or planning to do. It’s fun, educational, and can always end up as part of a blog post, but it really doesn’t do anything for the list. It may even add things to the list: now I need to read a book/do more research on this new topic I have become interested in.

An even more serious objection is that every day of procrastination adds to the chances of unforeseen events occurring. These can range from life-threatening (I meant to replace my tires months ago, now I’m sliding sideways after a blowout) to merely project-threatening (I’m finally going to take care of this right now––but the person I need to talk to is out for a month on bereavement leave). In the real world things change all the time; in the procrastinator’s world, things only change for the better (If I wait, maybe tires will go on sale again, because I missed last week’s sale.) Even if you really can finish that task in the 24 hours left before it must be completed, what if you come down with the flu, have to concentrate on a lost wallet or a sick dog, your spouse or children require your time, someone steals your laptop or it has a fatal crash, and so on. And there you are, left defending yourself with the words of Jake in the Blues Brothers:

I ran out of gas. I, I had a flat tire. I didn’t have enough money for cab fare. My tux didn’t come back from the cleaners. An old friend came in from out of town. Someone stole my car. There was an earthquake. A terrible flood. Locusts. IT WASN’T MY FAULT, I SWEAR TO GOD.

AustralianLocusts.jpg

But I had other plans for today!

Locusts in Australia. Source.

Full disclosure: I wrote this as soon as I had thought about it, honest––but there certainly were other more important things I should have been doing!