20 years of Magical Thinking OR The Limits of Thinking Positive

http://www.cnn.com/2008/LIVING/personal/05/23/magical.lists/index.html

"I don't mean to rain on anyone's parade, but there's considerable evidence that -- brace yourself -- not all our thoughts come true. If thinking were absolute power, every plane carrying an aviophobe would crash and every lottery ticket would win. Humans are often afflicted by things they aren't thinking about (I, for one, don't believe AIDS babies lie around brooding about immune disorder)."

 

There are those who will try to tell you that you can "cure" your CFS or fibromyalgia with positive thinking.

It’s not that easy. I’m a big believer in the mind-body connection, but I also know there are limits. Acting like you’re healthy (just like spending like you’re rich when you actually earn minimum wage) will lead to bankruptcy ... I’ve more than once run myself completely into the ground trying to keep going after symptoms started on the belief that I can will away the disease if I just keep acting like there’s nothing wrong.

The real key is in the accuracy of your diagnosis. If you actually have depression and were misdiagnosed with CFS, then anti-depressants, exercise and positive thinking may help you. But if you have True CFS, anti-depressants are useless, exercise will make you worse, and positive thinking will have an effect only if you’ve been afflicted with negative thinking.

One of my doctors thought that CFS was another name for depression and tried to cajole me to try to do more, not realizing that when I said "I can’t", I meant that through trial and error I’d determined that I really, physically, could not. All the positive thinking in the world, repeating "I think I can, I think I can, I think I can" had not made the impossible possible, because I was already operating at my upper limit (and getting steadily worse as a result). What I needed at that moment was permission to do less. (And when I started to do less, my condition stabilized. Didn’t get better, because I still wasn’t sleeping well, but at least it wasn’t continuing to get worse.)

In fact, researchers have determined that CFS patients think just the opposite of depressives: they always think that they can do more than they really can. When I walked out of my SSDI Mental Status Exam in 2001, I was thinking "I’ll never get benefits, I did much too well on the test". Imagine the shock when I opened the report a few weeks later and it said that I did worse than someone with traumatic brain injury! In reading Sheila Bastien’s "CFS neuropsych signature", I know now that my scores were exactly what they should be with CFS. She’s noted patients lose 50 points off their IQ, people with Ph.D.s and high-functioning jobs test at or below normal IQ while in relapse. There was not a thing in my evaluation that didn’t match up exactly to what Dr. Bastien said it should be. Including the erroneous idea that I’d done really well on the test.

I don’t have CFS because I sat around thinking negative thoughts. I have CFS because I had a serious virus and, thinking only positive thoughts, decided that I was good to go back to work the day after I first sat for an hour propped up by pillows. Bad decision ... I should have taken another week off to get better.

I didn’t go into relapse because I was divorced. It has nothing to do with being down in the dumps. I went into relapse because I kept thinking "I can work through this" instead of taking a week off to get healthy. In my case, the positive thinking is what’s detrimental. When I stopped telling myself "you can do anything if you try hard enough" and started telling myself that "it’s OK to stay in bed", "it’s OK not to keep the house spotless", "it’s OK not to cook 3 proper meals a day", is when I started getting enough rest to stop the downhill slide.

Like the AIDS babies cited above, you didn’t get this because you sat around brooding, and it doesn’t stick around because you’re thinking about your symptoms. If you have True CFS or true fibromyalgia, not just misdiagnosed depression, it’s not something that arrived due to negative thinking and it’s not going to go away due to positive thinking. You may be able to think your way to being a little bit better if you’ve succumbed to some negative thinking as a result of the disease, but unless you have an incredibly mild case, positive thinking isn’t going to make all the symptoms go away.

You need proper medical treatment, not a positive thinking seminar or counseling. Untreated medical conditions, no matter what they are, tend to get worse, so don’t let a doctor tell you there’s nothing he can do for you. For fibromyalgia, insist on Lyrica. For CFS, the first step is to improve the quality of your sleep – spending 20 hours "sleeping" in light Stage 1 sleep is not as good as spending 8 hours getting good sleep including the deep Stage 4 healing sleep that you need. There are plenty of good sleeping pills out there; try them all until you find the one that works best for you, with the fewest side effects.

If your problem is that you can’t sleep due to pain, make it clear to the doctor that this is not inflammatory pain, therefore NSAIDs (Advil, aspirin, etc.) will not help; inform him that Tramadol is mild enough to be sold over-the-counter in Canada – for me it takes enough of the edge off that I can fall asleep. But I still needed the extra kick from the Lunesta to stay asleep; 4-5 hours with the Tramadol was better than 2 hours without, but 8-10 hours with the Lunesta is even better.

Between the pain/sleeping pills and the Sleep Number bed, I’m finally getting the deep sleep necessary for my body to start healing itself. I’m not going to kid you, I’m still impaired, but it’s not as bad as it was when I was sleeping 2 hours a night. I now wake up feeling rested; the exhaustion still kicks in when I get up and do something, but at least it’s not there even before I open my eyes. When I was sleeping only 2 hours a night, I woke up every morning for a couple years with diarrhea and vomiting; the problem isn’t entirely solved, but it’s no longer an everyday event.