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....)

(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)

Fibromyalgia: Is That All There Is?

"The Three Graces" illustration that appeared in the original fibromyalgia criteria study (1990) with tender points superimposed.

I've been asked (more than once) if there is a blood test that will determine if one has fibromyalgia (also known as Fibromyalgia Syndrome (FMS), nasty and degrading little term that's used, "syndrome," no?)  The short (and sad) news is that no, there is no blood tests that will identify fibromyalgia.  However...

...there are certain blood tests that should be run for three reasons: first, to exclude any conditions that may mimic fibromyalgia; second, to exclude if comorbidities exist - that is, to see if other conditions in addition to the fibromyalgia exist; and third, to factor in what would help establish how and if fibromyalgia symptoms can be lessened.

Before we get into the above reasons, I would like to emphasize that in most cases fibromyalgia is relatively easily established by a rheumatolgist or pain specialist knowledgeable in fibromyalgia.  Not all rheumatologists, pain specialists, or even neurologists, however, are equal in identifying fibro and indeed some of the specialists out there who claim to be well-acquainted with fibro are indeed not specialists in the field.  Unfortunately, I know this first-hand as a "professional patient."  (Ha! But sadly also true.)

But getting to my list:

• Fibromyalgia can occur on its own, yes.  For the most part, however, it's a sign that there is something else going on and that cause needs to be checked out. 

• As they say in the medical field, your usual doc starts looking for horses before the "zebras bit" but when it comes to fibro, a medical history is absolutely necessary as it may point out what would normally be viewed as zebras in most any other medical field.  In other words, it's incredible that when it comes to fibro the zebras are actually horses.  For example, adult growth hormone deficiency is often seen in fibromyalgia as Dr. Robert Bennett first described in 1992.   Car accidents can also be a cause of fibro, although often showing up years later. As is seen in my case, HGH insufficiency and numerous other factors have contributed to my fibromyalgia, including my CFIDS/CFS/ME.  However, lupus, osteoarthritis and even cancer - indeed almost any autoimmune disease and infectious disease - can cause fibro, as well as sleep disturbances (the latter described by Moldovsky and Smythe, 1974).

• There are other blood tests that can (and should) be run to see if it's a nutritional problem. A deficiency in magnesium (Red Blood Cell test should be run or the results will be inaccurate) and Vitamin B deficiencies are just two nutrients that can lead to problems with fibromyalgia. I was shocked, for example, to discover by two different doctors that I was indeed vitamin B deficient (trusting soul that I am NOT) and that it can take up to two years to overcome a vitamin B deficiency. 

I've found that after identifying and treating my many deficiencies, my fibromyalgia got much better, but it took a long time (well over two years for the HGH to also kick in) but I need to be monitored all the time because as I've said so often before, things just keep going wrong.

The American College of Rheumatology has published criteria to help the doctor make the diagnosis of fibro.  However, keep in mind that fibromyalgia is not a diagnosis of exclusion.  It used to be thought of as a "wastebasket" diagnosis, but no more! 

It also used to be thought of as a manifestation of depression. That notion has been disproved by many studies showing that depressed patients perform very differently on neuropsychological testing compared to fibromyalgia patients. The two profiles are simply very different.

Your doctor can use the published fibromyalgia criteria to establish whether or not you have fibromyalgia but blood testing can be very useful in the assessment and treatment of fibromyalgia patients.  However, looking into the various criteria (i.e., the evolution of the criteria over the years) and knowing some of the people involved, I must say that I do have a problem with some of the doctors who are in ivory towers and see few patients, who don't take good histories, as well as those who are afraid to touch their patients.  

But then I'm a bit picky, aren't I?

As always, I hope all are doing the best they can be, only better.  Ciao and paka!

Raphael's original "The Three Graces" with the tender points superimposed.