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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.
Showing posts with label muscle metabolism. Show all posts
Showing posts with label muscle metabolism. Show all posts

Friday, February 8, 2013

Friday Tidbits: Straight Talk about Fibro

Just between you and me....

"To quote the University of California San Diego psychiatrist Stephen Stahl, 'fibromyalgia is emerging as a diagnosable and potentially treatable syndrome' (Stahl 2001).  While acknowledging that psychological influences are powerful modulators of pain related suffering and dysfunction, there is now a growing understanding that fibromyalgia cannot be 'written off' as a somatoform pain disorder.  Fibromyalgia is a multi-symptomatic syndrome defined by the core feature of chronic widespread pain."  Robert Bennett (fibromyalgia pioneer)
                                                               
Much has been written lately regarding the notion that fibromyalgia is fundamentally a psychiatric disorder. The term "affective spectrum disorder" comes to mind and this term suggests that mood is paramount in the pathology of fibromyalgia.  I've been around long enough to see that this concept is not new and appears about every decade or so, only to be debunked over and over and over again.  Why is there a push to throw fibro into the psychiatric arena?  I mean, look at the quote at the beginning of this post: even the "up there" psychiatrists understand that fibro is not a psychological or psychiatric disorder. How much does it take to get the rest of the medical community (and the media!) to finally get that message?

One reason might be that it is convenient for doctors to think that fibro patients are mentally ill and they can be shoved into the direction of psychologist/psychiatrists.  Another reason is that once a fibro patient is labeled as having primarily a mental problem, the search for co-morbidities ceases.  This makes it very economical for third-party payers who seem to be more and more reluctant to pay for needed tests and treatments.  Just ask your doctor about how difficult it is to get insurance companies to pay for newer medications or to allow patients to get expensive tests! 

I believe it's time to set the record straight and, hopefully, the information below will put things into their proper perspective.  This is not to say that some fibro patients don't have psychiatric and/or psychological problems but rather to say that fibro patients have objective quantifiable physical problems and as a result may become depressed.  

Three important points need to be made to distinguish fibro from any sort of primary mental illness:

  • About 20 years ago, fibro researchers Vaeroy and Russell found that the spinal fluid of fibro patients was much different than that of normal controls.  A chemical that transmits painful signals from the rest of the body to the brain, Substance P, was found to be three to four times higher in concentration in the spinal fluid of fibro patients, compared to controls.  This is definitely a neuro-chemical phenomenon and most certainly NOT a psychological or psychiatric manifestation.
  • In 1992 Bennett reported a fascinating phenomenon that was found in the muscles of young fibro patients that was not seen in control subjects of the same age.  He used a sophisticated technique employing radioactive phosphorus and measured the patterns of muscle activity using NMR spectroscopy and found that the young fibro patients had an abnormal pattern known technically as "phosphodiester peaks" but they were nowhere to be found in the young controls.  Rather, these peaks were found in the muscles of elderly subjects.  This certainly can explain why fibro patients have fatigue and low stamina ... it's not because they are depressed.  
  • Neuro-psychological testing is another tool that differentiates fibro patients from patients suffering from depression.  The two profiles are very different.  For example, the depressed patient is convinced that he cannot do a particular task whereas the fibro patient is confident, often insistent, that the task can be done - only to be disappointed because the task couldn't be accomplished, either because of pain, fatigue or cognitive difficulties, including mental fatigue. 
The diagnosis of fibro can be made by applying either the 1990 criteria or the 2010 proposed criteria (by the American College of Rheumatology) or both.  In neither case is mood or depression ever mentioned.  These problems can CO-EXIST in certain patients with fibro, but they are not PART of fibro.  This distinction is very important because it affects the lives of patients who may be denied benefits or even employment if they are thought to have a solely psychiatric problem.  The facts speak for themselves but one must have an unbiased and receptive ear to hear them.  

As always, I hope all are feeling their best, only better.  Have a great weekend all!  Ciao and paka!