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.

Thursday, October 4, 2012

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.


  1. This is an insightful and informative account. As an ex-nurse I found it far more helpful and descriptive than most other info I have read about Fibromyalgia. The link with other conditions is interesting and very true in my own experience.
    I was diagnosed by default according to symptomatology alone. Hope further research will shed more light on the diagnosis, treatment and management of this painful condition.

    1. Thanks, Joy! Yes, I keep praying for more research and more understanding of fibro, as well as ME and a whole lot of other illnesses that simply don't get the funding or attention that they deserve! xx

  2. I replied to your Autumn Venting post and in that reply, I listed [some of] the symptoms I have. Because Fibro mimics so many other diseases - including MS - tests have to be run to exclude those illnesses. It's like the Fibro Fairy wants a ton of attention and borrows from her 'sister' illnesses so that we get socked with a ton of crappy symptoms.

    I am very grateful for my rheumatologist who spent more than an hour and half with me during my first appointment. We went through my medical history, test results, symptoms, and a physical exam. He wrote a script for 3 more blood tests to be 100% certain but, diagnosed Fibromyalgia during that first appointment. He said it's severe (it remains so) and tweaked some of the meds that my GP prescribed. He also took me off of a narcotic pain killer because that particular one isn't helpful and it's obviously addictive.

    Everyone handles pain management differently. While I might experience greater pain relief with narcotics, my doctors and I decided that becoming medically addicted wasn't in my best interest.

    As for treatment, I've done more than a year's worth of acupuncture, more than a year's worth of allergy shots, I also do hypnosis, I meditate, use an anti-seizure medication, a non-narcotic pain killer, a low-dose blood pressure medication, (for migraine 'control'), Co-enzyme Q10, 5-HTP, and D3. I use heating pads sometimes, although the Ultram and Neurontin make it difficult for me to handle heat and I overheat easily. I can't get massages thanks to the nerve damage - or the massage therapist would experience my reflexive guarding. I get Lidocaine injections in 8 Fibromyalgia trigger spots and began Botox injections in August for the migraines.

    Many years ago, I stopped eating foods that contain high fructose corn syrup. I tried the gluten thing but, I don't seem to have issues with gluten. I do have some problems with lactose but, that's gotten better since I started using probiotics and eating dairy treated with the enzyme.

    I saw a nutritionist who increased my daily caloric intake as well as my fat and protein intake. The changes in these last 2 paragraphs have helped with my irritable bowel and have, therefore, helped (to some extent) with my immune system. Inflammation anywhere in the body negatively affects the immune system. If you can help your digestive system and reduce inflammation, you can help your immune system.

    As for the aforementioned D3, I take 2000 IU per day. That may or may not be boosting my immune system. I do not take B vitamins outside of the amount contained within my daily Co-Enzyme Q10 pill. I have tried countless versions, brands, etc. and all B vitamins make me sick to my stomach. My blood tests always yield good B-levels (on the high end of normal) so I'm not concerned with taking B separately. My magnesium level is "perfect" and is not related to my migraines.

    It's unfortunate but, Fibro is managed, it isn't cured.

    1. I love your "fibro fairy" and "sister illness" terms, Labyorkie! Yes, the Lidocaine injections I've found to be really helpful (understatement) and like you, I stay as far away from high fructose corn syrup as I can (and almost any sugar for that matter) but find that the gluten thing doesn't really hurt me the way it supposedly does many others. (Thanks for the validation since I always feel as if I'm swimming against the stream of whatever others do!)
      Most of what you say is exactly what I keep trying to point out: that everyone has to be able to read their own bodies very well and go from there. None of us are identical and I do get upset when I see doctors who rigidly try to make these grand statements about what we should and shouldn't do: I've been at this "game" long enough to see every single one of the (bleeped) "written-in-stone proclamations" revised and revoked many times over. That's why we need to work with doctors who don't try to pigeon-hole us into any one-size-fits-all formula, especially when they themselves don't really know what's going on. Yet another reason I loved Dr. Travell's approach: she instinctively saw what worked for a patient and what didn't and went with what she saw instead of following "conventional wisdom." xx