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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.

Sunday, March 24, 2013

It Can LOOK Like Fibro...

Trust me!  

Chances are that if you are reading my blog you are interested in fibromyalgia and/or CFIDS/ME/CFS.  You might even think that you or someone you know has fibro.  Complicating things, however, is that for many reasons, all too many people out there are being forced to make self-diagnoses, be it because of not finding the "right" doctor, not getting access to the "right" doctor, finances, or even not feeling well enough to get yourself into a doctor's office because of pain and/or fatigue.  (Oh no! Is this post going to be full of "and/or's"?)

However, that being said, as with every illness and/or disorder out there, a diagnosis of fibro and/or CFIDS is not one that can be made by the patient alone.  There's an old saying, "a doctor who treats himself, has a fool for a patient."  Actually, it was Sir William Osler, considered to be one of the greatest doctors of modern medicine and familiar to those of us with CFIDS, who penned that old adage.  We know of him because of the classic book by Hillary Johnson on CFIDS, Osler's Web.  If you're interested in it, this link provides an excellent review of the book.  But to get back to the matter at hand...

The same adage of a doctor and a fool goes as well for the layman when it comes to diagnosing his or her problem.  An accurate diagnosis is essential because without it proper treatment can't be obtained. Fortunately, there are criteria that enable your doctor to make an accurate diagnosis of fibromyalgia.  The American College of Rheumatology (ACR) published the first criteria in 1990 and proposed a new set of criteria in 2010.  So, why do I bring this up (again)?

There are conditions which cause widespread pain but are not, indeed, fibro.  If some of these conditions aren't accurately diagnosed, the patient may die prematurely, go blind or require kidney dialysis.  Here is a short "for example" list of some of these disorders.  

  • Polymyalgia Rheumatica (PMR): This is an inflammatory connective tissue disease that causes the patient, typically over the age of 50, to hurt all over.  However, it differs from fibro in that a blood test - an erythrocyte sedimentation rate (ESR) - is abnormal.  Routine blood tests like the ESR, on the other hand, are normal in fibro patients.  If left undiagnosed, PMR can lead to a vasculitis, which can cause blindness, heart attacks and kidney failure.  Needless to say, you don't want to miss this diagnosis!  Yet how easy would it be to think you have fibro.  PMR should absolutely be ruled out. 
  • Early Rheumatoid Arthritis (RA): In its early stages, RA can cause widespread pain without the joints being visibly swollen.  RA can be diagnosed with the use of diagnostic criteria published by the ACR.  The earlier a correct diagnosis of RA is made, the better the chances of significant crippling being prevented.  The patient who mistakenly thinks she has fibro, but really has early RA, is at a big disadvantage in getting timely treatment and may actually suffer permanent joint damage as a result.
  • Systemic Lupus Erythematosis (SLE): This serious, often life-threatening, disease has been called "the great imitator."  Left undiagnosed, a patient with lupus can suffer significant kidney damage, permanent neurological deficits and may actually die prematurely from heart, lung, or brain involvement.  Again, there are accepted criteria for the diagnosis for SLE.  You don't want to miss this diagnosis either.  

What makes things even more complicated is that none of these diseases, including fibro, are disorders that only exist as single entities.  As I've pointed out in at least one previous post, a patient can have lupus and fibro, for example.  

My rheumy and I have spoken at length about this.  (Actually, I think he's about ready to take me out back and shoot me!)  Be that as it may, the bottom line is don't be your own doctor.  Get an accurate diagnosis and appropriate treatment.  

As always, hoping everyone is doing their best, only better.  Ciao and paka!  

(And I've actually written a short post!  Yay me!  I'm a slow learner but....)

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