According to Frederick Wolfe, lead author of the 1990 paper that first defined the ACR fibromyalgia classification criteria, "the large majority of physicians, sociologists, and medical historians" are skeptical about the validity of fibromyalgia as a clinical entity. Some call fibromyalgia a “non-disease” and “an over-inclusive and ultimately meaningless label.” Wolfe now questions the validity of fibromyalgia as a disease. He considers fibromyalgia a physical response to stress, depression, and economic and social anxiety, and believes the associated symptoms are a normal part of everyday life. In 2009, he wrote, "the tendency to respond with distress to physical and mental stressors is part of the human condition." Wolfe notes that, "opponents of the fibromyalgia concept argue that, as it is a non-disease, we are legitimizing patients' sickness behavior by providing a disease label."
Friday, March 9, 2012
Is Fibromyalgia a Made-Up Illness?
Note: This will surely piss some people off...
Is Fibromyalgia a disease with a physical pathogen, or merely the result of depression and stress? The pain may be 'real' but the cause may be literally all in your head.
One sure way to stir up controversy is to say that Fibromyalgia or Chronic Fatigue Syndrome or some other illness that has no physical symptoms (other than reported pain) is a made-up illness. People will get incensed and say, "Our Pain is Real!"
And that may be true. But pain does not occur in your joints, your muscles, or even in your nerve endings. No, it occurs in your mind. Even if someone saws your leg off with a chainsaw, the pain doesn't occur in the leg, but in your mind, where you actually feel pain. Similarly, you do not "see" with your eyes, but rather receive light signals. It is the mind that assembles these into images that we see.
But mental illnesses have a stigma in our society. And depression is one of those illnesses where we tend to blame the victim. "Cheer up!" we say, as if it were a cure. And people are thus reluctant to seek help for depression, convinced it is too trivial a matter to bother a doctor about.
And as a result, it is not uncommon for a lot of maladies to appear in the mind - psychosomatic illnesses. And these do occur with regularity, particularly among depressed people or hysterical teens. And some folks often make hay from these things - doctors or political activists with an ax to grind.
And the sufferers from these illnesses do enjoy the attention they get, and are comforted in having an official diagnosis of their ailment. After all, just "getting too old" or "drinking too much" or "being depressed" are not as concrete a diagnosis as a mysterious disease without any physical symptoms - other than pain. The mysterious disease has a name and a cache. And if anyone calls you out on it - that it might be fake - even the Doctor who first gave it a name - you can go on the offensive and call them all sorts of nasty things. Just wait for it...3.....2.....1.... FLAME!
Having a diagnosis is comforting, and I can say this from experience. I had neck pains and a "trick neck" that would get stiff and hurt like hell, if I twisted a certain way. And eventually, I had an MRI which revealed a very physical symptom - a compressed and ruptured disc in my neck. But while that diagnosed the problem, the cure was..... nothing. Unless I wanted to risk paralysis and death in an iffy operation that would cost tens of thousands of dollars, the best thing to do was to leave it alone, and apply heat or cold or massage when it got stiff.
But knowing what the problem was, ironically, solved the problem. And the incidence of neck problems dropped off dramatically since that time. The mind is a powerful thing, it seems, and having a diagnosis - putting a name on things - is comforting to many folks.
The doctor who invented Fibromyalgia now questions the validity of Fibromyalgia as a disease
And when I think back on it, my neck problems tended to flare up in times of stress -when my muscles and jaw tightened and I would grind my teeth. And when stress went away? The pain went away as well.
Funny how that works - the mind is a powerful thing. And I can say the same thing for Gout and Diverticulitis - once these mysterious symptoms were assigned a name and a cause (and a cure) they seemed less threatening and scary - and mentally I felt better and emotionally I felt better - and as a result, the symptoms have largely abated (even though the physical symptoms, as measured by blood tests or colonoscopies, or MRI scans, persist). The mind is a powerful thing.
And yes, I have friends who diagnosed themselves with Fibromyalgia, and then went hunting for a Doctor who would confirm the diagnosis. And let's face it - there are plenty of Doctors out there who will go along with whatever you propose. Plenty more just sigh and write you a 'script for an anti-depressant and then collect their $40 co-pay. Why not? Because chances are, that is what the patient needed.
But my friends with this disease were in a bad physical and emotional state - due to financial stress, marital stress, depression, alcohol use, lack of exercise and lack of mobility, and poor diet. Stress can lead to tensing of muscles which in turn can lead to muscle pain. Ask any massage therapist - or even a Chiropractor. See the diagram above.
Not surprisingly, when my friend changed her situation, improved her finances, started being more active, and ate better, she became less depressed. And lo and behold, her Fibromyalgia symptoms started to abate - which of course made her even happier, and of course, reduced the symptoms even further. The cycle of depression feeds on itself, making symptoms worse and worse. But similarly the cycle of cure works the same way - but making things better and better.
Is Fibromyalgia a made-up disease? Many doctors characterize it as a set of symptoms looking for a disease. In the classic sense of a disease vector - some virus, bacteria, organ malfunction, joint calcification, blood disorder, it defies diagnosis. The only symptom is pain reported by the patient. And like Chronic Fatigue Syndrome (the Fibromyalgia of the 1980's) or Spastic Colon, the "cure" is often anti-depressants, which tend to go after the root cause of the disease, depression, which in turn is often caused by stress. The guy who invented Fibromyalgia has since recanted his findings, and decided that it really isn't a physical disease of the body, but a symptom of the mind:
In the 1980's, we saw this same trend, where people self-diagnosed themselves with "Chronic Fatigue Syndrome". And articles appeared in Woman's magazines (like Fibromayalgia, it is mostly Women who suffer, overwhelmingly) about it. In short order, it was on the cover of Time magazine and in all the Women's magazines, and that just bootstrapped more self-diagnosis of the disease. And before long, more and more people diagnosed themselves with "Chronic Fatigue Syndrome" and went in search of doctors to validate this diagnosis.
And eventually they found them. But within a few years, the hoopla surrounding the disease started to fade and the number of diagnoses started to drop off. And many doctors remained skeptical that a disease ever existed. People get old, tired, arthritic. They eat poorly, they have sleep disorders. They overwork. And of course, the get depressed. All of these things lead to increasing pain levels as we get older. And when they first set in, they can be somewhat frightening. After all, our bodies were so good to us in our 20's and 30's, right? You hit 40 and suddenly everything hurts all the time.
And men, perhaps raised to be more stoic, tend to complain about this less, and just chalk it up to "an old football injury" or one of the many stupid things they did as youth. But perhaps women, being more introspective and in touch with their bodies, become more alarmed by these changes.
The net result is that these diseases tend to be overwhelmingly reported by women, and rarely reported by men. Is there a virus that attacks only women? It seems highly unlikely.
Is there are harm in these diseases of the mind? Yes, to both the sufferer and our medical community. For the sufferer, the disease can often become a hobby, which makes symptoms worse, over time. They now look for every slight change in their welfare and makeup and chalk up whatever feeling they are having to the disease.
And if they convince themselves they are in pain and cannot walk or move (as my friend did) then they stop being active, which results in more pain and difficulty moving. It becomes a vicious circle.
And of course, some folks use it to go on disability, which like Carpal Tunnel, can be a pretty sweet deal (and just as easy to fake, as it is hard to diagnose and often no physical symptoms appear).
They become enamored of the process of the disease. They are not looking for wellness or a cure, but sympathy, a support group, and of course, a chance to shout down anyone who disagrees with self-diagnosed illnesses. The disease becomes and end in and of itself, and like the pot smoker who blathers on about legalizing pot all the time, the Fibromayalgia sufferer spends all day long on websites and chat groups, bores their friends about the issue, and of course, flames anyone who dares question the "science" of it as being utterly lacking.
They become the friend with the perpetual problem in short order. Their meaningless lives are now filled with meaning - a disease with a cool-sounding name that no one can prove you have or don't have. They have a new hobby - pain. Hey, it's almost as much fun as self-diagnosing your children with illnesses!
A better approach, I think, is to realize that all pain is in the mind, and that perhaps there may be other causes, such as depression, old age, drinking, arthritis, and the like. And either getting on anti-depressants, or figuring out what is making you depressed - or just moving on with your life and making the best of it. No one ever died from Fibromyalgia. No one has ever been "cured" of it, either.
So when you decide to label yourself a sufferer from Fibromyalgia, you may end up hurting yourself, as you are labeling yourself a "victim" and then following that well-worn path of victim-hood. No longer self-actualizing, you instead become a "sufferer". It is a shitty way to spend the remaining years of your life. A mild case of Fibromyalgia will turn into a major case, if you follow this path.
Does this hurt the rest of us? Yes, because we all have to pay for the health care costs of people who go to the doctor for every ache, pain, and illness - imagined or real. And increasingly, our society caters to this small group of hypochondriacs who whine and moan and won't leave the doctor's office until they have a diagnosis and prescription in hand.
This article has some interesting information about Fibromyalgia. And while the article details some alleged physical causes of the disease, note how most of the "cures" focus on diet, mobility, and anti-depressants. Mental state is the key.
And this is true, really, for any disease - even the ones that will really kill you. Is Fibromyalgia a made-up disease? In the end analysis, it really doesn't matter if it is or not. When you make a hobby of any illness, you can end up making it worse, not better. You can decide whether to define your life around an illness or disease or not.
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Note: Flame postings from insane self-diagnosed Fibromyalgia sufferers will not be posted, so don't bother. Just go back to your Fibromyalgia chat group and post a message about what a rotten, heartless bastard I am, for not validating your pain. But in the back of your mind, maybe you should start wondering where this is all taking you or whether it is really a worthwhile way to spend your life. Get off the chat group and stop self-identifying yourself as a victim.