or "just exactly how much can CBT do for CFS patients?"
Some of the proponents of Cognitive Behavioral Therapy (CBT) for CFS/fibro would have you believe that you can cure all your symptoms just by thinking happy thoughts.
I've even heard it suggested that pain would go away entirely if the patient didn't engage in "pain behaviors" ... things like wincing, moaning, limping. Let me tell you as someone who had to cover up a limp onstage: when my knee is acting up, it hurts *more* to not limp. Trust me, I'm not limping because I want sympathy; I'm limping because my knee has locked and it takes too much pain and effort to try to straighten it with every step. Anyone who thinks that chronic pain patients are simply *pretending* to have pain because they want those around them to feel sorry for them has a screw loose! In fact, those "pain behaviors" that we're supposed to stop doing are actually a coping mechanism. I actually walk faster limping than I can while making the conscious effort to force the leg to straighten each time I put it down, and visibly slowing down to do that is far more likely to get someone to offer sympathy than a limp that they often don't even notice because I'm moving at a normal speed.
Let me tell you, the Power of Positive Thinking can take you only so far. As a kid, I wanted to become a stewardess on an international airline, and even more so when my best friend did just that. I fit the height and weight requirements. I studied lots of languages to make myself more readily employable. But when it came down to it, the airlines had an uncorrected vision requirement that I could not meet, and no amount of positive thinking was going to get my 20/400 down to an acceptable 20/40. This wasn't something I could fake with an unobtrusive squint at the eye chart; I could barely see the chart without my glasses much less make out the letters near the bottom. There was no Lasik surgery available in those days; nothing I could do to fix the problem, other than fall back, regroup, and aim toward a career in international law where my language ability would come in handy.
That's only one example of where I've diligently followed the rules of "imagine it, and it can be so", and did more than merely imagine – I diligently worked toward achieving my goal – but in the end, positive thinking was not enough to overcome something beyond my control. I could be the best shortstop in the world (and I actually was pretty good back in the day, being the shortstop of choice on several co-ed teams, over some of the males who wanted the job), but I'll never play at the major league level. Not because I have CFS, but because it's actually written into the charter of MLB that women are not allowed. Again, my solution was to fall back, regroup, and find something else to do with my athletic talent when the Power of Positive Thinking was not enough due to something that I couldn't change.
Unfortunately, a lot of the positive thinking gurus don't tell you that there will be times you can't succeed, because the people they're really aiming their lectures at are those who are looking for any excuse possible for failing to succeed, which is the reason they haven't succeeded in the past.
Then there are those of us who were very successful before we were felled by CFS, who have to come to grips with the fact that sometimes failure is not because we didn't give it our all, but because some things are simply beyond your control. I cannot take a pill that has not been invented to cure my CFS, and since I'm not trained in that field, I can't discover one myself, either -- I have to wait until someone else with the right skills does what I need to have done before I can succeed.
There's a place for CBT in the treatment of CFS/fibro, for those who've become depressed because of their limitations and need to learn to live a new lifestyle. And learning mind-body tricks like biofeedback or distracting yourself from your pain has a use during the day.
My problem was that what I have to do mentally to override the pain is incompatible with turning off my brain so I can fall asleep; the instant my brain stopped thinking about other things and started to drift off toward slumber, the pain would come back full force and jolt me awake, forcing me to turn on my brain again to distract myself from the pain. One of many medical self-help things where I can do one or the other, but not both (for another example, I'm supposed to eat lots of spicy food every day to clear my sinuses, but I'm also supposed to completely avoid spicy food because of my touchy digestion).
But try getting it across to a doctor that you don't appear to be in severe pain during the day when you're doing things to distract yourself, but at bedtime the pain keeps you from falling asleep because you're not able to distract yourself without staying awake all night. It took finding someone who sees first-hand a similar medical condition in his own family to understand that what he sees in his office at 1 PM when I'm chatting and listening to music is not necessarily what he'd see at 1 AM in my bedroom when it's dark and silent and my brain has nothing else to concentrate on but the throbbing in my damaged joints.
It troubles me that some advocates are so worried about CFS/fibro being classified as psychosomatic that they insist that CBT has no place at all in the treatment of CFS/fibro. There are times it can be beneficial for limited purposes. It will not cure the underlying virus, or return you to perfect health and full-time employment, but it might make life a little more bearable for someone who is struggling to adjust to their "New Normal".
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