About Me

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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.

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! 


  1. Irene - Well said as always. I have one comment about pain and pain medications. We found out immediately after Pete's rotator cuff surgery that Vicodin can actually cause pain to INCREASE. Poor Pete suffered with the pain for a couple of weeks until we finally decided on our own to stop the medication. His pain lessened within 24 hours!
    People need to understand that individuals react to medications differently and it's so important to listen to your own instincts about your treatment.
    BTW, you look beautiful!

    1. Thanks for your always kind words, Martha! Yes, we all react differently to meds and absolutely need to follow our instincts. This brings up an issue - actually more than just one - that I've been meaning to address, so I'm going to try to do so in my next post if all goes well. Thanks so much! xx

  2. I'm another severe chronic suffer, who also has Fibro, that had to stop taking opioids due to increase pain. And over long term use, it just wasn't working anymore.
    Much has been written about the Diagnostic and Statistical Manual of Mental Disorders including criteria that could have doctors including chronic pain and Fibro, as a mental illness.
    Unfortunately, the book is about to go to the printers and is scheduled to be released in May 2013.
    What's needed is continuing dialogue, education, and awareness from the chronic pain community.
    Maybe someday we can be as well represented as the cancer community.

    1. Thanks for your comments, Berry. I hope to address your experience in my next post as well. I hope you don't mind, as I think it'll help more patients understand what's going on. I just hope I've not jinxed my so-called "health" in saying that. And yes, the upcoming DSM is scary. I hope (tho doubt) that much is rumor. xx

  3. Ditto what Martha said, great post!

    Taking her comment a bit further too. Not all pain meds work the same (or at all) in all patients. If one type of pain med doesn't work, don't discount out the many other options!!! No one has to "settle" with whatever outrageous pain level they are currently enduring. Just because something didn't work, don't discount other options and don't ya dare let your doctor give up either!

    1. Yes, Shannon, will address this in an upcoming post. And I so agree that you should push your doctor to find what helps or find a doctor who has the knowledge and determination to figure out what DOES help. xx

  4. Did you hear about the retrovirus they found at Wittemore Petersen Institute in Reno, Nevada? It must have been important because UK gov went out of their way to rubbish the findings. I have had M.E. since 1994/5 not diagnosed for 5 yrs.

    1. I only know the murkiest of what's going on. You're talking about the MXRV, I assume? I know there have been problems recreating the findings and furthermore, that if indeed it is so, it'll apply to only a certain subgroup of those with ME/CFS. I've given up on trying to figure it out since it has become the worst of medical politics. Nasty. xx

  5. Great article. I have fibro. Almost every doctor I have been to has told me my fibro is due to depression. Yet I wasn't diagnosed with depression until after years of dealing with fibro, trying everything and nothing working. It got so hard dealing with everything that depression set in. I don't know when they are going to accept it is not all in our heads, but it will be a happy day for a lot of fibromites.

    1. Sorry for the delayed response, KJ. This whole depression thing has worn me out more than anything. I accept that I'm ill, am ok with the whole nightmare and then some idiotic doctor gets his/her claws into me, messes my brain up, wondering if I'm not exaggerating, depressed, etc. I can safely say that my docs then have to work long and hard to get me out of that place where I doubt everything about myself. It's enough to make one cry - well, almost! ;) Thanks for writing in. It helps me in those moments when I have those doubts. xx